Given all the confusion about the terminology, it’s comforting to know that the pro-
cedure for the lumpectomy itself is not nearly so confusing. In short, a lumpectomy is
the removal of a mass of tissue that has been identified as suspicious either by mam-
mogram, ultrasound, needle biopsy, or any or all of the above. The surgeon also re-
moves what he—and you—hope is a rim of benign tissue all the way around the
lump. In some cases, a lumpectomy may also be accompanied by another incision to
remove underarm, or axillary, lymph nodes, a surgery technically called a lymphec-
tomy. Typically, a lumpectomy is followed by radiation therapy, but that treatment
is entirely dependent on the pathologist’s report. More on that later.
Regardless of what it’s called, a lumpectomy is fairly routine—not to you, certainly,
but to your medical team. We’re here to tell you what it’s like.
Minus One Golf Ball
Let’s start with why your surgeon would recommend and why you would choose a
lumpectomy over a mastectomy. The primary advantage of a lumpectomy over a
mastectomy is fairly obvious: You still have two breasts when they’re done. It’s con-
sidered a breast-conserving measure, and for certain cancers, a lumpectomy com-
bined with radiation has been proven to be as effective as a mastectomy. But there
are some less obvious advantages, too. First, you’ll recover much more quickly and
easily after a lumpectomy (unless they took out lots of lymph nodes). Second, you’ll
retain most of the feeling in your breast and for some women at least, that sensation
directly affects their sex lives. Third, there’s minimal scarring.
But are there some situations in which a lumpectomy isn’t an option? Yep. Aside
from the fact that some malignancies are too far advanced for a lumpectomy (see
Chapter 5, “Decisions, Decisions, Decisions”), there are times when an otherwise
obvious choice of lumpectomy is the wrong choice:
1. You can’t have radiation a second time in the same spot. So if you’ve already
had radiation therapy on the affected breast, the typical lumpectomy–radiation
combo won’t work for you this time.
2. Maybe you have two or more suspicious areas
in the same breast. If they’re too far apart to
be removed through one incision, a lumpec-
tomy won’t work.
tomy won’t work.
3. If you’ve already had a lumpectomy but the
margins weren’t clear (i.e., cancerous tissue
showed up in the rim around the lesion), your
surgeon may try a second lumpectomy to get
clear margins. After that, a mastectomy is your
only choice.
4. If you have certain connective tissue diseases
that make you particularly sensitive to radia-
tion therapy, a lumpectomy won’t work for
you. Your doctor/surgeon will know and will
pass the word along to you.
5. If you’re pregnant and would require radiation
before your baby is born, the lumpectomy–
radiation combo won’t work for you, either.
Radiation can be harmful to the fetus.
So, yes, sometimes a lumpectomy isn’t an option.
Talk it over with your doctor.
Monday, March 30, 2009
Partial Mastectomy
Your surgeon may recommend a “partial mastec-
tomy.” The words sound scarier and more dramati
than “lumpectomy,” as if somehow they’re going
to remove lots of tissue. In reality, “partial mastec-
tomy” is often synonymous with “lumpectomy”
and the term doesn’t necessarily suggest how
much tissue your surgeon plans to remove. In
addition, a partial mastectomy may or may not
involve the removal of lymph nodes, but your
surgeon will tell you in advance what he plans
to do. Otherwise, ask.
It’s also possible your surgeon will recommend a
segmental mastectomy or quadrantectomy. The terms
may lead you to think you’re in for the removal of
at least a quarter of your breast, and you may be.
However, some medical teams use the terms rather
loosely—so again, ask if you’re unsure.
Bottom line: these words—excisional biopsy, inci-
sional biopsy, partial mastectomy, segmental mas-
tectomy, quadrantectomy, and lumpectomy—can
be synonymous.
tomy.” The words sound scarier and more dramati
than “lumpectomy,” as if somehow they’re going
to remove lots of tissue. In reality, “partial mastec-
tomy” is often synonymous with “lumpectomy”
and the term doesn’t necessarily suggest how
much tissue your surgeon plans to remove. In
addition, a partial mastectomy may or may not
involve the removal of lymph nodes, but your
surgeon will tell you in advance what he plans
to do. Otherwise, ask.
It’s also possible your surgeon will recommend a
segmental mastectomy or quadrantectomy. The terms
may lead you to think you’re in for the removal of
at least a quarter of your breast, and you may be.
However, some medical teams use the terms rather
loosely—so again, ask if you’re unsure.
Bottom line: these words—excisional biopsy, inci-
sional biopsy, partial mastectomy, segmental mas-
tectomy, quadrantectomy, and lumpectomy—can
be synonymous.
They’re Gonna Do What?
A lumpectomy by any other name is still a lumpectomy, which is the removal of a
lump or mass of tissue. For certain cancers, the lumpectomy combined with radiation
therapy has proven equally as effective as a mastectomy, which is the removal of the
entire breast. Your surgeon will use one of the following terms: surgical biopsy, (in-
cluding perhaps a reference to excisional or incisional biopsy), partial mastectomy
(maybe using terms like segmental mastectomy or quadrantectomy), or lumpectomy.
Surgical Biopsy
In Chapter 1, “It Ain’t Gold in Them Hills,” we talked about a core needle biopsy as a
diagnostic procedure. A surgical biopsy serves the same purpose: to remove tissue in
order for a pathologist to find out what’s there. If your surgeon calls it an excisional
biopsy, he plans to remove a suspicious mass as well as a rim of tissue in order for the
pathologist to identify any malignancy.
On the other hand, if it’s called an incisional biopsy, you have a large tumor, and your
surgeon plans to remove a wedge of the lump in order for the pathologist to deter-
mine what’s there.
Since the surgery at this point is really diagnostic, typically neither kind of biopsy in-
volves the removal of lymph nodes. Depending on what the surgeon and pathologist
find, however, you may be in for more surgery.
lump or mass of tissue. For certain cancers, the lumpectomy combined with radiation
therapy has proven equally as effective as a mastectomy, which is the removal of the
entire breast. Your surgeon will use one of the following terms: surgical biopsy, (in-
cluding perhaps a reference to excisional or incisional biopsy), partial mastectomy
(maybe using terms like segmental mastectomy or quadrantectomy), or lumpectomy.
Surgical Biopsy
In Chapter 1, “It Ain’t Gold in Them Hills,” we talked about a core needle biopsy as a
diagnostic procedure. A surgical biopsy serves the same purpose: to remove tissue in
order for a pathologist to find out what’s there. If your surgeon calls it an excisional
biopsy, he plans to remove a suspicious mass as well as a rim of tissue in order for the
pathologist to identify any malignancy.
On the other hand, if it’s called an incisional biopsy, you have a large tumor, and your
surgeon plans to remove a wedge of the lump in order for the pathologist to deter-
mine what’s there.
Since the surgery at this point is really diagnostic, typically neither kind of biopsy in-
volves the removal of lymph nodes. Depending on what the surgeon and pathologist
find, however, you may be in for more surgery.
Chapter 7 Taking Your Lumps: Lumpectomy
In This Chapter
➤ What “lumpectomy” means
➤ Anticipating the surgery
➤ What to expect during surgery
➤ The post-surgery forecast
When the surgeon says, “We’ll take out a lump about the size of a golf ball,” he may
be describing your lumpectomy. Depending on the size and stage of your cancer and
the size of you, a lumpectomy can refer to the removal of anything from 1 percent
to 50 percent of your breast. Still, thousands of women who undergo a lumpectomy
applaud the treatment for an obvious reason: it saves most of their breast tissue.
Furthermore, today’s research suggests that for a majority of women with breast can-
cer at Stage I or II, the combination of a lumpectomy and radiation therapy is prefer-
able to a mastectomy.
Following a lumpectomy, most women never experience any change in appearance,
apart from an inch-long scar along one side of the breast. If your surgeon recom-
mends a lumpectomy (or if he recommends any of several other procedures that
amount to the same thing), we’re here to alleviate your fears and talk you through
the experience. In this chapter, we’ll tell you about the many terms used to describe
the same surgical procedure and describe what you’ll most likely experience before
surgery, what the surgery itself is usually like, and what you can probably expect
afterward—short- and long-term.
➤ What “lumpectomy” means
➤ Anticipating the surgery
➤ What to expect during surgery
➤ The post-surgery forecast
When the surgeon says, “We’ll take out a lump about the size of a golf ball,” he may
be describing your lumpectomy. Depending on the size and stage of your cancer and
the size of you, a lumpectomy can refer to the removal of anything from 1 percent
to 50 percent of your breast. Still, thousands of women who undergo a lumpectomy
applaud the treatment for an obvious reason: it saves most of their breast tissue.
Furthermore, today’s research suggests that for a majority of women with breast can-
cer at Stage I or II, the combination of a lumpectomy and radiation therapy is prefer-
able to a mastectomy.
Following a lumpectomy, most women never experience any change in appearance,
apart from an inch-long scar along one side of the breast. If your surgeon recom-
mends a lumpectomy (or if he recommends any of several other procedures that
amount to the same thing), we’re here to alleviate your fears and talk you through
the experience. In this chapter, we’ll tell you about the many terms used to describe
the same surgical procedure and describe what you’ll most likely experience before
surgery, what the surgery itself is usually like, and what you can probably expect
afterward—short- and long-term.
Part 2 Shock Waves: Dealing with Treatment
The initial shock that you have breast cancer turns into a rather long series of shock
waves. Once diagnosed with breast cancer, you’ll likely find yourself fully immersed in
its treatment for most of the next year, maybe longer.
This part of the book takes you through the surgery (maybe more than one) and the
likely follow-up with chemo, radiation, and/or hormone therapy. We’ll detail each
treatment and therapy, acknowledge their possible side effects, and suggest how you
can best cope with them.
But the underlying message in this part of the book is plain and simple: The
treatment—whatever it is—is only temporary. And it gives you the rest of your life.
waves. Once diagnosed with breast cancer, you’ll likely find yourself fully immersed in
its treatment for most of the next year, maybe longer.
This part of the book takes you through the surgery (maybe more than one) and the
likely follow-up with chemo, radiation, and/or hormone therapy. We’ll detail each
treatment and therapy, acknowledge their possible side effects, and suggest how you
can best cope with them.
But the underlying message in this part of the book is plain and simple: The
treatment—whatever it is—is only temporary. And it gives you the rest of your life.
Becoming a Semi-Legal Eagle
Sometimes, the more you know, the more you need to know. That is the case with dis-
crimination and breast cancer. Although no one expects you to become an expert—
especially at this time when your top priority is your health—it’s important that you
understand your legal rights in the workplace as a person with breast cancer. Here are
the basics: As of July 26, 1994, the Americans with Disabilities Act (ADA) banned dis-
crimination by both public and private employers against employees who had disabil-
ities. Although it doesn’t specifically identify those with breast cancer as part of that
class, past court rulings included those with cancer.
The Americans with Disabilities Act sets the following guidelines that all employers
must follow:
➤ You cannot treat an employee with disabilities differently than other workers.
➤ A potential employer can ask you medical questions, but only after you have
been offered employment and only if the questions involve a condition that
would relate specifically to your ability to perform the job in question.
➤ A potential employer cannot ask you to take a pre-employment exam used to
screen out those with cancer.
➤ An employee cannot be punished for filing a discrimination complaint.
For your information, section 504 of the Federal Rehabilitation Act of 1973 demands
that you file any complaint of discrimination within 180 days from the time the act
of discrimination occurred. If you’re a federal employee, the deadline is within 30
days. For more information, you can contact the Civil Rights Division of the U.S.
Department of Justice in Washington, D.C., or your nearest EEOC (Equal Employ-
ment Opportunity Commission) office, or call 1-800-USA-EEOC.
crimination and breast cancer. Although no one expects you to become an expert—
especially at this time when your top priority is your health—it’s important that you
understand your legal rights in the workplace as a person with breast cancer. Here are
the basics: As of July 26, 1994, the Americans with Disabilities Act (ADA) banned dis-
crimination by both public and private employers against employees who had disabil-
ities. Although it doesn’t specifically identify those with breast cancer as part of that
class, past court rulings included those with cancer.
The Americans with Disabilities Act sets the following guidelines that all employers
must follow:
➤ You cannot treat an employee with disabilities differently than other workers.
➤ A potential employer can ask you medical questions, but only after you have
been offered employment and only if the questions involve a condition that
would relate specifically to your ability to perform the job in question.
➤ A potential employer cannot ask you to take a pre-employment exam used to
screen out those with cancer.
➤ An employee cannot be punished for filing a discrimination complaint.
For your information, section 504 of the Federal Rehabilitation Act of 1973 demands
that you file any complaint of discrimination within 180 days from the time the act
of discrimination occurred. If you’re a federal employee, the deadline is within 30
days. For more information, you can contact the Civil Rights Division of the U.S.
Department of Justice in Washington, D.C., or your nearest EEOC (Equal Employ-
ment Opportunity Commission) office, or call 1-800-USA-EEOC.
The Sick Day Option
Can your company establish an attendance policy? Yes. Are you allowed sick days?
Yes, in most cases. What are the guidelines in this situation?
The Family and Medical Leave Act of 1993 requires employers with more than 50 em-
ployees to provide a certain term of unpaid leave time for serious illness of self, child,
spouse, or parent. Here are some of the specifics of this act:
➤ During a year, employees are allowed 12 weeks of unpaid leave.
➤ Employers must give employees the same or equivalent position when they
return.
➤ Employees are allowed a reduced work sched-
ule for the same time period if needed.
➤ Employers must continue to provide benefits
during the unpaid leave.
It’s important that you treat your employer with
as much consideration as possible. Try to give as
much notice as you can, be available during speci-
fied times to answer calls from co-workers if you
take sick days or an extended leave, or even go in
to the office to check on things on your “good”
days. By doing so, you’ll help build a mutually re-
spectful relationship with your employer and your
colleagues.
Letting Others In
In addition to issues of job performance, you’ll also
need to deal with your colleagues on a personal
level as well, at least to some degree. And just as is
true among your friends and family, you’ll face a host
of reactions when the news of your diagnosis spreads
throughout the office (which it almost certainly will,
no matter how discreet you try to be.) Some people
will assume that you’ll just pack up your tent and go
home. Others will pity you. Others will offer just the
right amounts of support and respect for your privacy.
Do remember that you have the right to keep your
private affairs private at all times. But it probably
makes sense to let certain people in on your condi-
tion, if only to allow them to support you when
you’re not feeling well or need time off.
When you talk to your colleagues, it’s important to re-
main as professional as possible. Depending on the
tone of the workplace, as well as your relationship to
your co-workers, you could always try adding a little
humor to the announcement. When people can
laugh, they have distance from the problem and are
able to cope with things. Humor also helps ease the
pain, both emotionally and physically.
If there are others in your company who have had
breast cancer, form a support group, or join any that
they already offer. Since cancer, directly or indirectly
affects about one in three women, it’s very likely that
you’re not the only one in your company who has
faced this disease.
Protecting Yourself at Work
What if you don’t have workplace options? What if
you don’t feel you’re being treated fairly because you
have breast cancer?
If you feel that your cancer has caused others in your
workplace to discriminate against you, take action.
First, talk with someone in your human resources de-
partment, your boss (if your boss is not involved in
the discrimination), or a support group. Find someone
who is familiar with workplace discrimination to not
only give you good advice and direction but also save
you hours of researching, legal fees, and even hurt
feelings.
You’ll also want to know your legal rights. Fortunately, you have plenty of those,
thanks in large part to the Federal Rehabilitation Act of 1973, which prohibits em-
ployers from discriminating against handicapped workers, including those women
and men with breast cancer.
Although these federal guidelines apply to all 50 states, not every company in every
state has to follow them. In fact, federal laws only apply to those who work for the
federal government, employers who receive funding from the federal government, or
private companies who have 25 or more employees. That means that if you work for a
small firm with just six workers, you may have to turn to an applicable state law—if
there is one—for help. Which also means you might have to get in the trenches and
do some legal research yourself.
Yes, in most cases. What are the guidelines in this situation?
The Family and Medical Leave Act of 1993 requires employers with more than 50 em-
ployees to provide a certain term of unpaid leave time for serious illness of self, child,
spouse, or parent. Here are some of the specifics of this act:
➤ During a year, employees are allowed 12 weeks of unpaid leave.
➤ Employers must give employees the same or equivalent position when they
return.
➤ Employees are allowed a reduced work sched-
ule for the same time period if needed.
➤ Employers must continue to provide benefits
during the unpaid leave.
It’s important that you treat your employer with
as much consideration as possible. Try to give as
much notice as you can, be available during speci-
fied times to answer calls from co-workers if you
take sick days or an extended leave, or even go in
to the office to check on things on your “good”
days. By doing so, you’ll help build a mutually re-
spectful relationship with your employer and your
colleagues.
Letting Others In
In addition to issues of job performance, you’ll also
need to deal with your colleagues on a personal
level as well, at least to some degree. And just as is
true among your friends and family, you’ll face a host
of reactions when the news of your diagnosis spreads
throughout the office (which it almost certainly will,
no matter how discreet you try to be.) Some people
will assume that you’ll just pack up your tent and go
home. Others will pity you. Others will offer just the
right amounts of support and respect for your privacy.
Do remember that you have the right to keep your
private affairs private at all times. But it probably
makes sense to let certain people in on your condi-
tion, if only to allow them to support you when
you’re not feeling well or need time off.
When you talk to your colleagues, it’s important to re-
main as professional as possible. Depending on the
tone of the workplace, as well as your relationship to
your co-workers, you could always try adding a little
humor to the announcement. When people can
laugh, they have distance from the problem and are
able to cope with things. Humor also helps ease the
pain, both emotionally and physically.
If there are others in your company who have had
breast cancer, form a support group, or join any that
they already offer. Since cancer, directly or indirectly
affects about one in three women, it’s very likely that
you’re not the only one in your company who has
faced this disease.
Protecting Yourself at Work
What if you don’t have workplace options? What if
you don’t feel you’re being treated fairly because you
have breast cancer?
If you feel that your cancer has caused others in your
workplace to discriminate against you, take action.
First, talk with someone in your human resources de-
partment, your boss (if your boss is not involved in
the discrimination), or a support group. Find someone
who is familiar with workplace discrimination to not
only give you good advice and direction but also save
you hours of researching, legal fees, and even hurt
feelings.
You’ll also want to know your legal rights. Fortunately, you have plenty of those,
thanks in large part to the Federal Rehabilitation Act of 1973, which prohibits em-
ployers from discriminating against handicapped workers, including those women
and men with breast cancer.
Although these federal guidelines apply to all 50 states, not every company in every
state has to follow them. In fact, federal laws only apply to those who work for the
federal government, employers who receive funding from the federal government, or
private companies who have 25 or more employees. That means that if you work for a
small firm with just six workers, you may have to turn to an applicable state law—if
there is one—for help. Which also means you might have to get in the trenches and
do some legal research yourself.
Working Through It
Although no hard-core data exists, it seems quite obvious to both survivors and their
doctors that cancer patients who “have places to go and things to do” seem to live
longer and enjoy the lives they are living more than those who withdraw from life.
Keeping this in mind, you may want to keep working as much and for as long possi-
ble. To work most effectively and efficiently, keep these tips in mind:
➤ Work in spurts. Sometimes your energy comes in waves. Take advantage of the
high points and make the most of the low points.
➤ Don’t call attention to what you “can’t” do. If there is something more diffi-
cult or time consuming than you can deal with, instead of saying you “can’t”
do it, see if someone will, covertly, trade responsibilities with you, even if it is
for a short period of time.
➤ Know the difference between doing and overdoing. Do, but don’t overdo.
Overdoing could set you back. If you listen hard, your body will let you know
the difference in no uncertain terms.
Do I Want to Stay Here?
Some cancer survivors panic at the thought of losing a job. Their job may be the love
of their life, the reason for their existence, and they may fear that they will be fired
or looked down upon because of their disease. They fear they may lose something
they cherish and that gives them a reason to get up each morning. Even those who
aren’t passionate about the work they do may need the job to pay their bills or keep
their precious health insurance. Indeed, for most people, work is not an issue of self-
esteem alone, it is absolutely necessary for survival.
Some people with breast cancer decide to leave their jobs because they assume that
the daily stress that the job supplies is more than they can take at this time. In fact, if
their jobs are particularly stressful, they may even blame their work for contributing
to the development of breast cancer in the first place. Whether or not stress can actu-
ally cause disease remains a subject of some controversy. However, if you feel that the
stress of your job wears you down, then getting rid of that stress may be helpful to
your overall health, if you’re able to do so without losing financial security.
Cancer survivors begin to ask themselves questions about their career. Are they there
only for a paycheck and benefits? Do they stay there because, once diagnosed, they
are afraid they won’t be hired anywhere else or be able to get benefits anywhere else?
Is there too much stress with the job? Are they satisfied with the job? Depending on
how they answer these questions, they could be out the door tomorrow.
Regardless of how you see yourself in your workplace there is some place to turn for
help.
doctors that cancer patients who “have places to go and things to do” seem to live
longer and enjoy the lives they are living more than those who withdraw from life.
Keeping this in mind, you may want to keep working as much and for as long possi-
ble. To work most effectively and efficiently, keep these tips in mind:
➤ Work in spurts. Sometimes your energy comes in waves. Take advantage of the
high points and make the most of the low points.
➤ Don’t call attention to what you “can’t” do. If there is something more diffi-
cult or time consuming than you can deal with, instead of saying you “can’t”
do it, see if someone will, covertly, trade responsibilities with you, even if it is
for a short period of time.
➤ Know the difference between doing and overdoing. Do, but don’t overdo.
Overdoing could set you back. If you listen hard, your body will let you know
the difference in no uncertain terms.
Do I Want to Stay Here?
Some cancer survivors panic at the thought of losing a job. Their job may be the love
of their life, the reason for their existence, and they may fear that they will be fired
or looked down upon because of their disease. They fear they may lose something
they cherish and that gives them a reason to get up each morning. Even those who
aren’t passionate about the work they do may need the job to pay their bills or keep
their precious health insurance. Indeed, for most people, work is not an issue of self-
esteem alone, it is absolutely necessary for survival.
Some people with breast cancer decide to leave their jobs because they assume that
the daily stress that the job supplies is more than they can take at this time. In fact, if
their jobs are particularly stressful, they may even blame their work for contributing
to the development of breast cancer in the first place. Whether or not stress can actu-
ally cause disease remains a subject of some controversy. However, if you feel that the
stress of your job wears you down, then getting rid of that stress may be helpful to
your overall health, if you’re able to do so without losing financial security.
Cancer survivors begin to ask themselves questions about their career. Are they there
only for a paycheck and benefits? Do they stay there because, once diagnosed, they
are afraid they won’t be hired anywhere else or be able to get benefits anywhere else?
Is there too much stress with the job? Are they satisfied with the job? Depending on
how they answer these questions, they could be out the door tomorrow.
Regardless of how you see yourself in your workplace there is some place to turn for
help.
I Am Woman, I Am Strong!
What the Law Says
Federal law and most state laws require an employer to provide an employee reason-
able accommodation. Reasonable accommodation is a change in job duties to help
you during the time you have breast cancer. It may be a change in actual job re-
sponsibilities or flexible working hours to allow for
chemotherapy or radiation therapy treatments.
For survivors, a routine or something close to normal
is a great help. Staying at work, or returning after a
medical leave, may provide stability and distraction
for us, but it may create a difficult situation at work.
How your colleagues respond to your condition and
the accommodations it requires may well depend on
the lead your superiors—both your immediate boss
and the management in general—take. If the office
staff thinks you’re contagious or under a death sen-
tence, or assumes that you’ll now be nonproductive
and a burden, you’re likely to feel quite uncomfort-
able at work.
If your boss or close co-workers avoid you or treat you
as nonproductive, so will the other employees. How-
ever, if they are understanding and knowledgeable,
your colleagues may well follow their lead. In addi-
tion, a boss who wants to educate his or her em-
ployees about breast cancer can do several things to
increase everyone’s understanding and to help you
ease back into your job responsibilities.
First of all, he or she can talk with you about what
“reasonable accommodations” would help. Reasonable
accommodations are temporary changes in your job,
such as flex time, time off, working from home, or job
share, during and/or after your cancer diagnosis and
treatment.
Second, he or she can bring in a healthcare professional to talk with the staff about
breast cancer and the treatments. You can help find such a professional through your
local support group or branch of the American Cancer Society.
Third, he or she can talk honestly and openly to you about what your capabilities
are. You, in turn, may want to talk with your boss and close co-workers, openly and
honestly, about things such as the reactions of more distant co-workers.
Knowledgeable and willing bosses also can act as a sounding board for employees
who now feel uncomfortable with you and uncertain of what to say. He or she can
offer them the right words—“I don’t know how or what you are feeling, but I want
you to know that I care and wonder if there is anything I can do to help?”—for in-
stance. This is a major improvement over saying nothing at all and avoiding you
completely.
Bosses can plan parties when you are finished with your treatments. They can suggest
that co-workers treat you as naturally as possible, which will include asking you out
to lunch (if they always did so in the past) or
bringing you coffee when they go for their own.
Remember, most people will want to help—they
just may not know what to do. You can help edu-
cate and increase understanding.
We have heard so many stories of people who had
such a good experience in going back to work. A
woman who was getting ready to opt for early re-
tirement decided to keep working. She was not pre-
pared for two major changes at the same time, and
her work helped her focus on something other
than her illness. One woman decided to take un-
paid leave time during her chemotherapy. All she
could do was think about how badly she felt. She
went back to work and felt better almost immedi-
ately.
No, you have not had a lobotomy and lost all of
your intelligence with a lumpectomy or a mastec-
tomy. No, all your job skills were not located in the
breast tissue that was removed. Yes, you want to
go back to work. Yes, you want to do, but do not
overdo.
As frustrating as it may be, your boss and your co-
workers may need you not only to guide them in
their responses to your needs, but also to educate
them in general about what having breast cancer
means—to a woman and to an employee. Take a
little extra time and make a bigger effort to ease
their minds. It’ll pay off in the long run!
Federal law and most state laws require an employer to provide an employee reason-
able accommodation. Reasonable accommodation is a change in job duties to help
you during the time you have breast cancer. It may be a change in actual job re-
sponsibilities or flexible working hours to allow for
chemotherapy or radiation therapy treatments.
For survivors, a routine or something close to normal
is a great help. Staying at work, or returning after a
medical leave, may provide stability and distraction
for us, but it may create a difficult situation at work.
How your colleagues respond to your condition and
the accommodations it requires may well depend on
the lead your superiors—both your immediate boss
and the management in general—take. If the office
staff thinks you’re contagious or under a death sen-
tence, or assumes that you’ll now be nonproductive
and a burden, you’re likely to feel quite uncomfort-
able at work.
If your boss or close co-workers avoid you or treat you
as nonproductive, so will the other employees. How-
ever, if they are understanding and knowledgeable,
your colleagues may well follow their lead. In addi-
tion, a boss who wants to educate his or her em-
ployees about breast cancer can do several things to
increase everyone’s understanding and to help you
ease back into your job responsibilities.
First of all, he or she can talk with you about what
“reasonable accommodations” would help. Reasonable
accommodations are temporary changes in your job,
such as flex time, time off, working from home, or job
share, during and/or after your cancer diagnosis and
treatment.
Second, he or she can bring in a healthcare professional to talk with the staff about
breast cancer and the treatments. You can help find such a professional through your
local support group or branch of the American Cancer Society.
Third, he or she can talk honestly and openly to you about what your capabilities
are. You, in turn, may want to talk with your boss and close co-workers, openly and
honestly, about things such as the reactions of more distant co-workers.
Knowledgeable and willing bosses also can act as a sounding board for employees
who now feel uncomfortable with you and uncertain of what to say. He or she can
offer them the right words—“I don’t know how or what you are feeling, but I want
you to know that I care and wonder if there is anything I can do to help?”—for in-
stance. This is a major improvement over saying nothing at all and avoiding you
completely.
Bosses can plan parties when you are finished with your treatments. They can suggest
that co-workers treat you as naturally as possible, which will include asking you out
to lunch (if they always did so in the past) or
bringing you coffee when they go for their own.
Remember, most people will want to help—they
just may not know what to do. You can help edu-
cate and increase understanding.
We have heard so many stories of people who had
such a good experience in going back to work. A
woman who was getting ready to opt for early re-
tirement decided to keep working. She was not pre-
pared for two major changes at the same time, and
her work helped her focus on something other
than her illness. One woman decided to take un-
paid leave time during her chemotherapy. All she
could do was think about how badly she felt. She
went back to work and felt better almost immedi-
ately.
No, you have not had a lobotomy and lost all of
your intelligence with a lumpectomy or a mastec-
tomy. No, all your job skills were not located in the
breast tissue that was removed. Yes, you want to
go back to work. Yes, you want to do, but do not
overdo.
As frustrating as it may be, your boss and your co-
workers may need you not only to guide them in
their responses to your needs, but also to educate
them in general about what having breast cancer
means—to a woman and to an employee. Take a
little extra time and make a bigger effort to ease
their minds. It’ll pay off in the long run!
Chapter 6 Call for a Working Plan
In This Chapter
➤ Still an asset, not a liability
➤ Setting the workplace tone
➤ Knowing employee rights
➤ Where to go for help—if you need it
“And, what do you do for a living?” When you meet someone for the first time, do
you often ask this question first? Whether we work inside or outside the home, volun-
teer our services or receive a paycheck, at least part of our self-esteem is attached to
the work we do in our daily lives. For many people, work offers a sense of continuity
and community; going to the office, setting up in front of a computer, or folding the
laundry is part of a daily routine. But a diagnosis of breast cancer can—and probably
will—disrupt this routine, at the very time when routine, structure, and continuity is
what the doctor ordered! Indeed, more than 100 years ago, Freud said that the essence
of life was “love and work.” We need both.
In this chapter, we’ll explore the challenges of working outside the home while at the
same time coping with the physical and emotional demands of fighting breast cancer.
Those challenges may include not only having the strength and stamina to keep up
with the pace of work, it also may involve dealing with co-workers and superiors who
may feel uncomfortable with, or resentful of, your condition and the extra demands
on your time and attention it takes. We’ll show you ways to meet those challenges,
including what you’ll need to do from a legal standpoint if you face discrimination in
the workplace.
➤ Still an asset, not a liability
➤ Setting the workplace tone
➤ Knowing employee rights
➤ Where to go for help—if you need it
“And, what do you do for a living?” When you meet someone for the first time, do
you often ask this question first? Whether we work inside or outside the home, volun-
teer our services or receive a paycheck, at least part of our self-esteem is attached to
the work we do in our daily lives. For many people, work offers a sense of continuity
and community; going to the office, setting up in front of a computer, or folding the
laundry is part of a daily routine. But a diagnosis of breast cancer can—and probably
will—disrupt this routine, at the very time when routine, structure, and continuity is
what the doctor ordered! Indeed, more than 100 years ago, Freud said that the essence
of life was “love and work.” We need both.
In this chapter, we’ll explore the challenges of working outside the home while at the
same time coping with the physical and emotional demands of fighting breast cancer.
Those challenges may include not only having the strength and stamina to keep up
with the pace of work, it also may involve dealing with co-workers and superiors who
may feel uncomfortable with, or resentful of, your condition and the extra demands
on your time and attention it takes. We’ll show you ways to meet those challenges,
including what you’ll need to do from a legal standpoint if you face discrimination in
the workplace.
Take Your Vitamins (and Herbs), Dear
Medical folks often suggest that patients take a good multiple vitamin, minerals, and
antioxidants. Always read labels, however, and know what they mean. Then ask your
oncologist to make sure nothing you’re taking will interfere in any way with other
treatments. In addition, many survivors report using herbal teas and juices to help
them feel better. Be aware, however, that there is no FDA supervision of the produc-
tion, content, or safety of herbal remedies. For more on nutrition, see Chapter 23,
“Life Goes On: Physical and Emotional Changes.”
antioxidants. Always read labels, however, and know what they mean. Then ask your
oncologist to make sure nothing you’re taking will interfere in any way with other
treatments. In addition, many survivors report using herbal teas and juices to help
them feel better. Be aware, however, that there is no FDA supervision of the produc-
tion, content, or safety of herbal remedies. For more on nutrition, see Chapter 23,
“Life Goes On: Physical and Emotional Changes.”
Tales from the Trenches
“I used an herbal tea, which I still drink,” reports Letta. “It has four herbs in it that are
also used in the making of Taxol, one of my chemo drugs. Everybody thought I went
through chemo just great, and I often think that the tea was part of that.”
Margie reports that she used fish oil capsules and flaxseed. “I grind the seed in a coffee
grinder and mix it with applesauce. And it’s great on ice cream!” But always check with
the doc about anything you ingest, even vitamins.
“I used an herbal tea, which I still drink,” reports Letta. “It has four herbs in it that are
also used in the making of Taxol, one of my chemo drugs. Everybody thought I went
through chemo just great, and I often think that the tea was part of that.”
Margie reports that she used fish oil capsules and flaxseed. “I grind the seed in a coffee
grinder and mix it with applesauce. And it’s great on ice cream!” But always check with
the doc about anything you ingest, even vitamins.
Oldest Medicine of All
Acupuncture (with laser acupuncture a recent innovation) and acupressure are main-
stays in Traditional Chinese Medicine (TCM). These methods, thousands of years old,
now enhance many Western doctors’ traditional practices. Acupuncture involves in-
serting thin needles into special places to relieve pain and treat illnesses, and some
survivors have found it useful to relieve the side effects of chemo. Acupressure is a
kind of massage in which the practitioner adds pressure to identifiable body pressure
points. (Check the Yellow Pages under “Acupuncture.”) Just remember that while
TCM offers complimentary treatments for certain side effects resulting from medical
cancer treatments, under no circumstances should you feel that any TCM can replace
your medical regimen for cancer.
The Final Choice: Yours
By now you surely know that we’re not here to tell you what to do. We can tell you
about your options. We can tell you survivors’ stories. We can tell you what to watch
out for. We can suggest ways of thinking through your options. But the big decision,
of course, is strictly yours. As you make these big decisions, however, keep the lines of
communication open with your medical team. Consider the following suggestions.
The Question, Please
Ask good questions about your treatment, but
avoid the confrontational “you” and replace it
with the non-confrontational “I.” For instance,
replace “You said …” with “I understood that …”
Ask good questions about your options, but ask
parallel questions. For instance, if you ask, “What
are the advantages of Option A?” be sure to also
ask, “What are the advantages of Option B?” Same
with disadvantages, side effects, and so on. (And
remember to keep track of all the answers in your
notebook.)
Learn the Lingo
Learn the technical medical language of your con-
dition so you can communicate with your medical
team. If someone uses a technical word you’re not
familiar with, ask. It’s easy to say, “I don’t know
that word. What does it mean?” The technical
medical language of your condition also lets you
speak confidently and ask specific questions of in-
surance representatives. When you have questions
about coverage, using the technical language will
help your representative give a better answer.
The Envelope, Please
Don’t seal details of your condition in the mayonnaise jar. Keep your medical team
informed about what’s going on in your life: your emotional state, family crises, fi-
nancial stress, whatever. Since everything in your life affects your treatment, it’s part
of decision making. Your medical team can help. Likewise, keep your medical team
informed about any complementary therapies you are using. Ask your doctor or nurse
about any vitamins, herbs, teas, juices, or other oral complementary treatments you
want to try. Make sure these won’t interfere with your standard treatment.
As you struggle with the many decisions about treatments and get bleary-eyed from
reading the fine print in your insurance policy, we hope you’ve found some lifelines
here. And since this isn’t a television game show, you can use every lifeline we and
your fellow survivors have shared. After all, on the battlefield, every soldier looks out
for his buddies, and, dear buddy, we’re looking out for you.
Acupuncture (with laser acupuncture a recent innovation) and acupressure are main-
stays in Traditional Chinese Medicine (TCM). These methods, thousands of years old,
now enhance many Western doctors’ traditional practices. Acupuncture involves in-
serting thin needles into special places to relieve pain and treat illnesses, and some
survivors have found it useful to relieve the side effects of chemo. Acupressure is a
kind of massage in which the practitioner adds pressure to identifiable body pressure
points. (Check the Yellow Pages under “Acupuncture.”) Just remember that while
TCM offers complimentary treatments for certain side effects resulting from medical
cancer treatments, under no circumstances should you feel that any TCM can replace
your medical regimen for cancer.
The Final Choice: Yours
By now you surely know that we’re not here to tell you what to do. We can tell you
about your options. We can tell you survivors’ stories. We can tell you what to watch
out for. We can suggest ways of thinking through your options. But the big decision,
of course, is strictly yours. As you make these big decisions, however, keep the lines of
communication open with your medical team. Consider the following suggestions.
The Question, Please
Ask good questions about your treatment, but
avoid the confrontational “you” and replace it
with the non-confrontational “I.” For instance,
replace “You said …” with “I understood that …”
Ask good questions about your options, but ask
parallel questions. For instance, if you ask, “What
are the advantages of Option A?” be sure to also
ask, “What are the advantages of Option B?” Same
with disadvantages, side effects, and so on. (And
remember to keep track of all the answers in your
notebook.)
Learn the Lingo
Learn the technical medical language of your con-
dition so you can communicate with your medical
team. If someone uses a technical word you’re not
familiar with, ask. It’s easy to say, “I don’t know
that word. What does it mean?” The technical
medical language of your condition also lets you
speak confidently and ask specific questions of in-
surance representatives. When you have questions
about coverage, using the technical language will
help your representative give a better answer.
The Envelope, Please
Don’t seal details of your condition in the mayonnaise jar. Keep your medical team
informed about what’s going on in your life: your emotional state, family crises, fi-
nancial stress, whatever. Since everything in your life affects your treatment, it’s part
of decision making. Your medical team can help. Likewise, keep your medical team
informed about any complementary therapies you are using. Ask your doctor or nurse
about any vitamins, herbs, teas, juices, or other oral complementary treatments you
want to try. Make sure these won’t interfere with your standard treatment.
As you struggle with the many decisions about treatments and get bleary-eyed from
reading the fine print in your insurance policy, we hope you’ve found some lifelines
here. And since this isn’t a television game show, you can use every lifeline we and
your fellow survivors have shared. After all, on the battlefield, every soldier looks out
for his buddies, and, dear buddy, we’re looking out for you.
Complementary Combos
Along with the treatment(s) you have decided on, you may want to consider certain
complementary treatment. Some survivors report a resulting boost in their battle
against breast cancer. We’re talking about methods used along with, but certainly not
instead of, treatments previously discussed. These are therapies that help manage
stress and discomfort, ease side effects, or provide a nutritional boost. For additional
details, check the National Center for Complementary and Alternative Medicine toll
free at 1-888-644-6226 or on the Web at nccam.nih.gov/. Following are some meth-
ods you may want to investigate.
Mind over Matter
Several mind-over-matter therapies have worked wonders for survivors who talked
with us. Visualization is one of these—a process by which you concentrate on seeing
the healing process. Janelle reports that she listened to the “1812 Overture” during
chemo and visualized with every crash of the cymbals the medicine blasting away the
bad stuff. Carolyn reports getting “a clear picture of
millions of tiny pink love hearts in my body. They
were gooey and could slip into spots nothing else
would fit. And every time they found something
suspicious, they smothered it with love, digested it,
and out it went.” You can learn to use visualization
by using readily available audio tapes or by contact-
ing a therapist, either of which can help you come
up with an image that works for you.
Hypnosis also works for some. Seven-year survivor
Susan Thomas, former oncology nurse and now
founder and president of Susan’s Special Needs in
Detroit, said she used a hypnotist to help her
through chemo. He went with her to every treat-
ment, and, in her hypnotic state, suggested to her
that the chemo was filling her with love. She never
experienced nausea, never took anything for it, was
never tired or sick, her blood count was always
okay, and she took over 80 percent of the pre-
scribed dosage. If you want, ask your medical team
to help you find a trained hypnotist who can do
the work for you or train you to hypnotize yourself.
Relaxation techniques rely on deep, even breathing and exercises to relieve stress.
Variations include progressive muscle relaxation, tai chi, or yoga. Several survivors re-
ported that using headphones and playing a new-age–type music tape during chemo
(and, one woman reported, during her surgery!) helped them to relax. By extension,
anything that helps distract you from immediate discomfort helps: a card game, a
book you can’t put down, a craft that requires your concentration.
Shown effective for reducing stress and managing discomfort, meditation is another
mind-over-matter therapy. It is so well respected as a complementary method that
hospitals, clinics, and community groups sponsor classes to help you get started. Ask
your medical team.
Finally, remember that it’s commonly accepted that the most important healing fac-
tor is your state of mind. It’s the old I-can-do-this attitude. Sure, you need to know
what you’re up against, but then you need to deal with it. Whether that means you
pound out your frustration on the jogging path or pound out your anger at the key-
board, whether you see a therapist every week or see your best friend over lunch
every week—whatever you do, it’s top priority that you maintain a positive attitude.
You. Can. Do. This. What’s more, if you need help, most hospitals can do psyche re-
ferrals, and the appointments may even be covered by insurance.
complementary treatment. Some survivors report a resulting boost in their battle
against breast cancer. We’re talking about methods used along with, but certainly not
instead of, treatments previously discussed. These are therapies that help manage
stress and discomfort, ease side effects, or provide a nutritional boost. For additional
details, check the National Center for Complementary and Alternative Medicine toll
free at 1-888-644-6226 or on the Web at nccam.nih.gov/. Following are some meth-
ods you may want to investigate.
Mind over Matter
Several mind-over-matter therapies have worked wonders for survivors who talked
with us. Visualization is one of these—a process by which you concentrate on seeing
the healing process. Janelle reports that she listened to the “1812 Overture” during
chemo and visualized with every crash of the cymbals the medicine blasting away the
bad stuff. Carolyn reports getting “a clear picture of
millions of tiny pink love hearts in my body. They
were gooey and could slip into spots nothing else
would fit. And every time they found something
suspicious, they smothered it with love, digested it,
and out it went.” You can learn to use visualization
by using readily available audio tapes or by contact-
ing a therapist, either of which can help you come
up with an image that works for you.
Hypnosis also works for some. Seven-year survivor
Susan Thomas, former oncology nurse and now
founder and president of Susan’s Special Needs in
Detroit, said she used a hypnotist to help her
through chemo. He went with her to every treat-
ment, and, in her hypnotic state, suggested to her
that the chemo was filling her with love. She never
experienced nausea, never took anything for it, was
never tired or sick, her blood count was always
okay, and she took over 80 percent of the pre-
scribed dosage. If you want, ask your medical team
to help you find a trained hypnotist who can do
the work for you or train you to hypnotize yourself.
Relaxation techniques rely on deep, even breathing and exercises to relieve stress.
Variations include progressive muscle relaxation, tai chi, or yoga. Several survivors re-
ported that using headphones and playing a new-age–type music tape during chemo
(and, one woman reported, during her surgery!) helped them to relax. By extension,
anything that helps distract you from immediate discomfort helps: a card game, a
book you can’t put down, a craft that requires your concentration.
Shown effective for reducing stress and managing discomfort, meditation is another
mind-over-matter therapy. It is so well respected as a complementary method that
hospitals, clinics, and community groups sponsor classes to help you get started. Ask
your medical team.
Finally, remember that it’s commonly accepted that the most important healing fac-
tor is your state of mind. It’s the old I-can-do-this attitude. Sure, you need to know
what you’re up against, but then you need to deal with it. Whether that means you
pound out your frustration on the jogging path or pound out your anger at the key-
board, whether you see a therapist every week or see your best friend over lunch
every week—whatever you do, it’s top priority that you maintain a positive attitude.
You. Can. Do. This. What’s more, if you need help, most hospitals can do psyche re-
ferrals, and the appointments may even be covered by insurance.
Insurance: Your Personal KGB
As soon as you have the slightest hint that breast cancer lurks in your future, call
your insurance company. Get the name of a representative whom you can call on a
regular basis. On the first page of your notebook, right below your doctors’ names
and numbers, write this person’s name, direct phone number, and toll-free number.
Explain your situation and ask for advice. Start a file (might as well make it a big one)
in which you will keep track of every call, every question answered, every direction
given—along with the date, time, and name of the person to whom you spoke.
Plan to keep five insurance-related files: bills, receipts, claims filed, claims pending,
and claims paid. In another folder keep letters: those from your medical team ex-
plaining the necessity for a given procedure, requests for sick leave, and any corre-
spondence about insurance. Better yet, since you are already stressed to the limit,
turn this task over to someone you trust to keep detailed records—husband, adult
son or daughter, or paid professional, such as an attorney or accountant.
Your primary concern, of course, is what your insurance will and will not pay. If
you’re past age 65 or have been permanently disabled for 30 months or more, Medi-
care will help pay your bills. It does not, however, pay all hospital expenses (you
have a co-payment and an annual deductible), so call your Social Security office
(1-800-772-1213) if you have questions. Even if you have Medicare, you probably
have some kind of supplementary health insurance.
Whether you are dealing with your primary insur-
ance, Medicare, or supplementary insurance, here
are questions you need answered:
➤ Will my insurance pay for second opinions?
➤ Are second opinions required?
➤ Will it pay only if I am treated by certain
doctors or surgeons, or treated in certain
medical facilities?
➤ Does it require “evidence of medical neces-
sity” before it will pay?
➤ Will it pay for any experimental treatments
and/or off-label drugs?
➤ What is my co-payment?
➤ Is there a maximum payment?
➤ Are any treatments excluded from my policy?
➤ Do I need a pre-authorization number for each doctor’s appointment, surgical
procedure, or follow-up treatment?
➤ Do I need any special forms?
➤ Are there any deadlines, such as notice prior to surgery or filing deadlines?
When you get answers to these questions, add the details to your notebook. The an-
swers will most likely influence your decisions about who, what, when, and where. De-
tailed records can eliminate major stress in the immediate and more distant future. I
know families who, a year after treatment, are still trying to unravel insurance tangles.
Be ready to fight if necessary. Let your medical team know about any battle with your
insurance company, especially if your doctor/surgeon recommends a procedure or
treatment and your insurance company reneges. Accustomed to dealing with the
technical vocabulary and innumerable quirks of insurance policies, your medical
team can often move boulders when you can only move pebbles. Sometimes insur-
ance companies that have been reluctant to pay get a much-needed nudge by your
telling them you’re calling your lawyer. If that doesn’t work, let your fingers do the
walking, make the call, and get that letter from your lawyer; sometimes it’s enough
to start things rolling.
Medical assistance is available for people under a certain income level. Talk to your
hospital social worker, hospital financial counselor, or cancer hotline. Organizations
like the American Cancer Society also offer assistance. Don’t hesitate to check them
out.
your insurance company. Get the name of a representative whom you can call on a
regular basis. On the first page of your notebook, right below your doctors’ names
and numbers, write this person’s name, direct phone number, and toll-free number.
Explain your situation and ask for advice. Start a file (might as well make it a big one)
in which you will keep track of every call, every question answered, every direction
given—along with the date, time, and name of the person to whom you spoke.
Plan to keep five insurance-related files: bills, receipts, claims filed, claims pending,
and claims paid. In another folder keep letters: those from your medical team ex-
plaining the necessity for a given procedure, requests for sick leave, and any corre-
spondence about insurance. Better yet, since you are already stressed to the limit,
turn this task over to someone you trust to keep detailed records—husband, adult
son or daughter, or paid professional, such as an attorney or accountant.
Your primary concern, of course, is what your insurance will and will not pay. If
you’re past age 65 or have been permanently disabled for 30 months or more, Medi-
care will help pay your bills. It does not, however, pay all hospital expenses (you
have a co-payment and an annual deductible), so call your Social Security office
(1-800-772-1213) if you have questions. Even if you have Medicare, you probably
have some kind of supplementary health insurance.
Whether you are dealing with your primary insur-
ance, Medicare, or supplementary insurance, here
are questions you need answered:
➤ Will my insurance pay for second opinions?
➤ Are second opinions required?
➤ Will it pay only if I am treated by certain
doctors or surgeons, or treated in certain
medical facilities?
➤ Does it require “evidence of medical neces-
sity” before it will pay?
➤ Will it pay for any experimental treatments
and/or off-label drugs?
➤ What is my co-payment?
➤ Is there a maximum payment?
➤ Are any treatments excluded from my policy?
➤ Do I need a pre-authorization number for each doctor’s appointment, surgical
procedure, or follow-up treatment?
➤ Do I need any special forms?
➤ Are there any deadlines, such as notice prior to surgery or filing deadlines?
When you get answers to these questions, add the details to your notebook. The an-
swers will most likely influence your decisions about who, what, when, and where. De-
tailed records can eliminate major stress in the immediate and more distant future. I
know families who, a year after treatment, are still trying to unravel insurance tangles.
Be ready to fight if necessary. Let your medical team know about any battle with your
insurance company, especially if your doctor/surgeon recommends a procedure or
treatment and your insurance company reneges. Accustomed to dealing with the
technical vocabulary and innumerable quirks of insurance policies, your medical
team can often move boulders when you can only move pebbles. Sometimes insur-
ance companies that have been reluctant to pay get a much-needed nudge by your
telling them you’re calling your lawyer. If that doesn’t work, let your fingers do the
walking, make the call, and get that letter from your lawyer; sometimes it’s enough
to start things rolling.
Medical assistance is available for people under a certain income level. Talk to your
hospital social worker, hospital financial counselor, or cancer hotline. Organizations
like the American Cancer Society also offer assistance. Don’t hesitate to check them
out.
Clinical Trials: Innocent or Guilty
One of the decisions you may face is your doctor’s or surgeon’s request that you par-
ticipate in a clinical trial. Lest you think you’ve been asked to become a human
guinea pig, know that prior to subjecting patients to this new treatment, the research
protocol undergoes stringent review by a board of scientists, doctors, nurses, and
laypersons. In most cases your risk is minimal, but you may have some real benefits.
Be assured that you cannot be placed in a clinical trial without your explicit permis-
sion, which includes your signature on a document called an Informed Consent
Form. Sometimes quite lengthy and detailed, this form must …
➤ Explain the rationale.
➤ Identify who is and is not eligible.
➤ Describe the procedure.
➤ Detail potential risks and benefits.
➤ Name the research participants (doctors, surgeons, etc.).
➤ Address concerns such as confidentiality, cost, and who to call if you have ques-
tions about your rights or the safety of this study.
Yes, there are justifiable cheers and jeers for partici-
pating in any clinical trial. The trials are so far-
reaching in scope, however, that it’s impossible to
say here whether or not you should participate. You
have to ask the usual informed-consumer questions
of your doctor and of the research group involved.
And, of course, you’ll want to check with your in-
surance company to make sure you’re still covered
The advantage of a clinical trial is that you are
getting state-of-the-art treatment that has shown
promise of being better than the best treatment
currently available. Be cautious, however, if your
doctor is part of the study. Certain pressures—
financial, professional, or personal—may (but not
necessarily) influence his or her decision to want
you on board. Be sure it’s in your best interest.
Even if you sign on the dotted line, you can decide to leave the study at any time. Or
your medical team can remove you from the study. Either way, your further treat-
ment won’t be jeopardized.
ticipate in a clinical trial. Lest you think you’ve been asked to become a human
guinea pig, know that prior to subjecting patients to this new treatment, the research
protocol undergoes stringent review by a board of scientists, doctors, nurses, and
laypersons. In most cases your risk is minimal, but you may have some real benefits.
Be assured that you cannot be placed in a clinical trial without your explicit permis-
sion, which includes your signature on a document called an Informed Consent
Form. Sometimes quite lengthy and detailed, this form must …
➤ Explain the rationale.
➤ Identify who is and is not eligible.
➤ Describe the procedure.
➤ Detail potential risks and benefits.
➤ Name the research participants (doctors, surgeons, etc.).
➤ Address concerns such as confidentiality, cost, and who to call if you have ques-
tions about your rights or the safety of this study.
Yes, there are justifiable cheers and jeers for partici-
pating in any clinical trial. The trials are so far-
reaching in scope, however, that it’s impossible to
say here whether or not you should participate. You
have to ask the usual informed-consumer questions
of your doctor and of the research group involved.
And, of course, you’ll want to check with your in-
surance company to make sure you’re still covered
The advantage of a clinical trial is that you are
getting state-of-the-art treatment that has shown
promise of being better than the best treatment
currently available. Be cautious, however, if your
doctor is part of the study. Certain pressures—
financial, professional, or personal—may (but not
necessarily) influence his or her decision to want
you on board. Be sure it’s in your best interest.
Even if you sign on the dotted line, you can decide to leave the study at any time. Or
your medical team can remove you from the study. Either way, your further treat-
ment won’t be jeopardized.
Standard Regimens for Breast Cancer Treatment
If You Have … The Usual Treatment Is …
Stage 0
Lobular carcinoma in situ (LCIS) Observation OR in special circumstances
with certain risk factors, bilateral
mastectomy
Stage 0
Ductal carcinoma in situ (DCIS)
a. DCIS in 2 or more quadrants a. total mastectomy (without lymph
node dissection)
b. DCIS in 1 quadrant and negative b. total mastectomy (without lymph
margins node dissection) OR lumpectomy with
radiation
c. DCIS in 1 quadrant with small, c. lumpectomy with radiation OR
low-grade cancer and negative lumpectomy without radiation OR
margins total mastectomy (without lymph node
dissection)
Stages I and II
Invasive breast cancer Lumpectomy and removal of underarm
lymph nodes and radiation therapy OR
modified radical mastectomy
Additional treatment dictated
by tumor size and nodal status,
as follows:
a. Node negative and …
a-1. tumor smaller than .05 cm a-1. no adjuvant therapy
a-2. cell type is tubular, colloid, a-2. no adjuvant therapy
or medullary and smaller than 1 cm
a-3. cell type is tubular, colloid, a-3. consider adjuvant therapy
or medullary and larger than
1 cm but smaller than 3 cm
a-4. cell type is tubular, colloid, a-4. adjuvant therapy recommended
or medullary and 3 cm or larger
a-5. cell type is invasive ductal a-5. no adjuvant therapy
or invasive lobular and tumor is
less than 1 cm with no unfavorable
features
a-6. cell type is invasive ductal a-6. consider adjuvant chemotherapy or
or invasive lobular and tumor is hormonal therapy
less than 1 cm but with unfavorable
features
continues
Stages I and II
a-7. cell type is invasive ductal a-7. adjuvant chemotherapy
or invasive lobular and tumor recommended
larger than 1 cm that is hormone
receptor-negative
a-8. cell type is invasive ductal a-8. Tamoxifen, with or without
or invasive lobular and tumor chemotherapy for tumors up to 3 cm
larger than 1 cm that is hormone and chemotherapy and Tamoxifen
receptor-positive for tumors over 3 cm
b. Node positive and …
b-1. hormone receptor-negative b-1. adjuvant chemotherapy
recommended
b-2. hormone receptor-positive b-2. adjuvant chemotherapy and
Tamoxifen
Stage IIIA
Invasive breast cancer, if operable Modified radical mastectomy followed
by chemotherapy and radiation
(if hormone receptor-negative) OR
chemotherapy, followed by modified
radical mastectomy followed by
additional chemotherapy, radiation,
and (if hormone receptor-positive or
uncertain) Tamoxifen, OR chemo-
therapy, followed by lumpectomy,
underarm lymph node removal, and
followed by additional chemotherapy
and (if hormone receptor-positive or
uncertain) Tamoxifen
Stage IIIB
Invasive breast cancer, inoperable Neoadjuvant chemotherapy, with or
without Tamoxifen; if tumor shrinks
enough to be operable, treatment
follows treatments for Stage IIIA;
otherwise, individualized therapy with
no standard treatment
Stage IV
Invasive breast cancer, if tumor is …
a. hormone receptor-positive and/or a. hormonal therapy followed in some
distant spread affects only bone or cases by chemotherapy
soft tissue
Stage IV
b. hormone receptor-negative and/or b. chemotherapy and/or other
distant spread affects internal chemotherapy protocol
organs
Stage 0
Lobular carcinoma in situ (LCIS) Observation OR in special circumstances
with certain risk factors, bilateral
mastectomy
Stage 0
Ductal carcinoma in situ (DCIS)
a. DCIS in 2 or more quadrants a. total mastectomy (without lymph
node dissection)
b. DCIS in 1 quadrant and negative b. total mastectomy (without lymph
margins node dissection) OR lumpectomy with
radiation
c. DCIS in 1 quadrant with small, c. lumpectomy with radiation OR
low-grade cancer and negative lumpectomy without radiation OR
margins total mastectomy (without lymph node
dissection)
Stages I and II
Invasive breast cancer Lumpectomy and removal of underarm
lymph nodes and radiation therapy OR
modified radical mastectomy
Additional treatment dictated
by tumor size and nodal status,
as follows:
a. Node negative and …
a-1. tumor smaller than .05 cm a-1. no adjuvant therapy
a-2. cell type is tubular, colloid, a-2. no adjuvant therapy
or medullary and smaller than 1 cm
a-3. cell type is tubular, colloid, a-3. consider adjuvant therapy
or medullary and larger than
1 cm but smaller than 3 cm
a-4. cell type is tubular, colloid, a-4. adjuvant therapy recommended
or medullary and 3 cm or larger
a-5. cell type is invasive ductal a-5. no adjuvant therapy
or invasive lobular and tumor is
less than 1 cm with no unfavorable
features
a-6. cell type is invasive ductal a-6. consider adjuvant chemotherapy or
or invasive lobular and tumor is hormonal therapy
less than 1 cm but with unfavorable
features
continues
Stages I and II
a-7. cell type is invasive ductal a-7. adjuvant chemotherapy
or invasive lobular and tumor recommended
larger than 1 cm that is hormone
receptor-negative
a-8. cell type is invasive ductal a-8. Tamoxifen, with or without
or invasive lobular and tumor chemotherapy for tumors up to 3 cm
larger than 1 cm that is hormone and chemotherapy and Tamoxifen
receptor-positive for tumors over 3 cm
b. Node positive and …
b-1. hormone receptor-negative b-1. adjuvant chemotherapy
recommended
b-2. hormone receptor-positive b-2. adjuvant chemotherapy and
Tamoxifen
Stage IIIA
Invasive breast cancer, if operable Modified radical mastectomy followed
by chemotherapy and radiation
(if hormone receptor-negative) OR
chemotherapy, followed by modified
radical mastectomy followed by
additional chemotherapy, radiation,
and (if hormone receptor-positive or
uncertain) Tamoxifen, OR chemo-
therapy, followed by lumpectomy,
underarm lymph node removal, and
followed by additional chemotherapy
and (if hormone receptor-positive or
uncertain) Tamoxifen
Stage IIIB
Invasive breast cancer, inoperable Neoadjuvant chemotherapy, with or
without Tamoxifen; if tumor shrinks
enough to be operable, treatment
follows treatments for Stage IIIA;
otherwise, individualized therapy with
no standard treatment
Stage IV
Invasive breast cancer, if tumor is …
a. hormone receptor-positive and/or a. hormonal therapy followed in some
distant spread affects only bone or cases by chemotherapy
soft tissue
Stage IV
b. hormone receptor-negative and/or b. chemotherapy and/or other
distant spread affects internal chemotherapy protocol
organs
Standard or Not?
If your surgeon recommends something dramati-
cally different from the so-called standard, ask for
reasons behind his or her decision. At the same
time, however, remember there’s no such thing as
“standard breast cancer,” so “standard treatment”
is only a set of averages. Every woman’s case car-
ries a unique set of details, and your surgeon and
doctors have all these details in mind when they
offer recommendations. My point? You won’t be
comfortable with any regimen unless you under-
stand and accept it. So ask. Be an informed con-
sumer. Then decide.
What if your surgeon gives you a choice between a
lumpectomy and a mastectomy? Or between a mas-
tectomy and a bilateral mastectomy? How do you
decide? By learning everything you can about your
diagnosis, what it means, and what the options are.
But you have to read—and you’re on your way by
reading this book—and then ask questions. Lots of
them. Start by comparing the chart later in this chap-
ter with your diagnosis, and then formulate a list of
questions for your surgeon:
➤ What are the advantages of each kind of
surgery?
➤ What are the disadvantages of each kind of
surgery?
➤ Why would you recommend one over the
other?
➤ What are my percentages for regaining full
health with each procedure?
➤ What typical radiation and/or systemic and/or
adjuvant therapies are recommended with each
procedure?
Make note of the answers in your notebook. Then, to digest what you’ve been told,
make a list. Put the advantages in one column and disadvantages in another. Then,
call a hotline again. Read, check the Internet, and talk. Talk to survivors. Talk to fam-
ily and friends. Keep track of their comments, suggestions, and observations, revising
your advantages-disadvantages list as you go.
Finally, after you’ve done enough reading, studying, and talking, when you look at
your list, the fog around your decision will lift. Take your list with you to your ap-
pointment with the surgeon to discuss your final decision. Then, if you have made a
decision based on misinformation or misinterpretations, your surgeon can point out
the error before you make a serious mistake.
Later, after you get the pathologist’s report from whatever surgical procedure you
have, you’ll use the same process to make decisions about radiation, systemic, and/or
adjuvant therapy. For instance, if your medical oncologist recommends a stem cell
rescue (sometimes called a bone marrow transplant), you’ll want to ask the informed-
consumer questions to find out why. It’s a fairly drastic measure used to treat ad-
vanced stages of breast cancer with such high doses of chemo that, without the
rescue, would be fatal. A somewhat controversial treatment, it involves removing
bone marrow prior to treatment and regenerating it through stem cell support or
transplant. Still, it’s saved lots of lives.
cally different from the so-called standard, ask for
reasons behind his or her decision. At the same
time, however, remember there’s no such thing as
“standard breast cancer,” so “standard treatment”
is only a set of averages. Every woman’s case car-
ries a unique set of details, and your surgeon and
doctors have all these details in mind when they
offer recommendations. My point? You won’t be
comfortable with any regimen unless you under-
stand and accept it. So ask. Be an informed con-
sumer. Then decide.
What if your surgeon gives you a choice between a
lumpectomy and a mastectomy? Or between a mas-
tectomy and a bilateral mastectomy? How do you
decide? By learning everything you can about your
diagnosis, what it means, and what the options are.
But you have to read—and you’re on your way by
reading this book—and then ask questions. Lots of
them. Start by comparing the chart later in this chap-
ter with your diagnosis, and then formulate a list of
questions for your surgeon:
➤ What are the advantages of each kind of
surgery?
➤ What are the disadvantages of each kind of
surgery?
➤ Why would you recommend one over the
other?
➤ What are my percentages for regaining full
health with each procedure?
➤ What typical radiation and/or systemic and/or
adjuvant therapies are recommended with each
procedure?
Make note of the answers in your notebook. Then, to digest what you’ve been told,
make a list. Put the advantages in one column and disadvantages in another. Then,
call a hotline again. Read, check the Internet, and talk. Talk to survivors. Talk to fam-
ily and friends. Keep track of their comments, suggestions, and observations, revising
your advantages-disadvantages list as you go.
Finally, after you’ve done enough reading, studying, and talking, when you look at
your list, the fog around your decision will lift. Take your list with you to your ap-
pointment with the surgeon to discuss your final decision. Then, if you have made a
decision based on misinformation or misinterpretations, your surgeon can point out
the error before you make a serious mistake.
Later, after you get the pathologist’s report from whatever surgical procedure you
have, you’ll use the same process to make decisions about radiation, systemic, and/or
adjuvant therapy. For instance, if your medical oncologist recommends a stem cell
rescue (sometimes called a bone marrow transplant), you’ll want to ask the informed-
consumer questions to find out why. It’s a fairly drastic measure used to treat ad-
vanced stages of breast cancer with such high doses of chemo that, without the
rescue, would be fatal. A somewhat controversial treatment, it involves removing
bone marrow prior to treatment and regenerating it through stem cell support or
transplant. Still, it’s saved lots of lives.
Who, What, When, and Where
We’ve already talked about selecting your medical team (see Chapter 4, “Taking Their
Word for It”). Now, assuming your surgeon and/or doctors are in place, your next de-
cision is choosing what treatment is best for you. With breast cancer, “treatment” is
usually plural, involving at least one kind of therapy and perhaps as many as three or
four. Depending on the type of cancer you have and how advanced it is, you may
have one or all of the following:
➤ Local therapy treats the tumor with surgery and/or radiation
➤ Systemic therapy uses chemicals or hormonal therapy traveling through the
bloodstream to attack the tumor
➤ Adjuvant therapy is a systemic therapy used when your doctor suspects cancer
cells may have escaped into other parts of the body even though no detectable
cancer remains after surgery
The usual routine is for your surgeon to recommend a surgical treatment and,
after the pathologist’s report is in, send you on to oncology specialists who recom-
mend the rest. In either case, though, you may be given two or even three choices.
How do you think this through?
Recommendation, Please
Starting with first things first, let’s consider the surgical decision. Refer to the note-
book you began earlier (see Chapter 3, “Learning a New Vocabulary”) and review
what your biopsy showed:
➤ What type of breast cancer do I have?
➤ Is it in situ or infiltrating?
➤ Has it metastasized?
➤ What stage is my cancer?
These are the bare-bones facts on which you’ll flesh out answers to lots of questions.
Remember, breast cancer comes in many shapes and styles, and what was right for
your sister or best friend may not be right for you. Know your diagnosis.
Until you’ve had some kind of surgery—a surgical biopsy, lumpectomy, or mastectomy
(and we’ll talk about these options in detail)—there are some unknowns. For in-
stance, you won’t know about lymph node involvement or the results of any hormone
receptor tests (another topic we’ll take up at some length later in the book). Without
that information, no one can confidently recommend any local or systemic therapy.
So your first decision may be whether to have a lumpectomy, mastectomy, or bilateral
mastectomy. Without going into the details now (we will in Chapters 7, “Taking Your
Lumps: Lumpectomy,” and 8, “When They Take It All: Mastectomy”), we can still
weigh the pros and cons.
Ask your surgeon two questions:
➤ What is the usual surgical treatment for my kind of breast cancer at my stage?
➤ Is there anything about my case that would suggest something different from
the usual?
Ask for explanations, and then compare the sur-
geon’s recommendations with the chart later in
this chapter, compiled from recommendations
from the American Cancer Society (ACS) and
the National Comprehensive Cancer Network
(NCCN).
Word for It”). Now, assuming your surgeon and/or doctors are in place, your next de-
cision is choosing what treatment is best for you. With breast cancer, “treatment” is
usually plural, involving at least one kind of therapy and perhaps as many as three or
four. Depending on the type of cancer you have and how advanced it is, you may
have one or all of the following:
➤ Local therapy treats the tumor with surgery and/or radiation
➤ Systemic therapy uses chemicals or hormonal therapy traveling through the
bloodstream to attack the tumor
➤ Adjuvant therapy is a systemic therapy used when your doctor suspects cancer
cells may have escaped into other parts of the body even though no detectable
cancer remains after surgery
The usual routine is for your surgeon to recommend a surgical treatment and,
after the pathologist’s report is in, send you on to oncology specialists who recom-
mend the rest. In either case, though, you may be given two or even three choices.
How do you think this through?
Recommendation, Please
Starting with first things first, let’s consider the surgical decision. Refer to the note-
book you began earlier (see Chapter 3, “Learning a New Vocabulary”) and review
what your biopsy showed:
➤ What type of breast cancer do I have?
➤ Is it in situ or infiltrating?
➤ Has it metastasized?
➤ What stage is my cancer?
These are the bare-bones facts on which you’ll flesh out answers to lots of questions.
Remember, breast cancer comes in many shapes and styles, and what was right for
your sister or best friend may not be right for you. Know your diagnosis.
Until you’ve had some kind of surgery—a surgical biopsy, lumpectomy, or mastectomy
(and we’ll talk about these options in detail)—there are some unknowns. For in-
stance, you won’t know about lymph node involvement or the results of any hormone
receptor tests (another topic we’ll take up at some length later in the book). Without
that information, no one can confidently recommend any local or systemic therapy.
So your first decision may be whether to have a lumpectomy, mastectomy, or bilateral
mastectomy. Without going into the details now (we will in Chapters 7, “Taking Your
Lumps: Lumpectomy,” and 8, “When They Take It All: Mastectomy”), we can still
weigh the pros and cons.
Ask your surgeon two questions:
➤ What is the usual surgical treatment for my kind of breast cancer at my stage?
➤ Is there anything about my case that would suggest something different from
the usual?
Ask for explanations, and then compare the sur-
geon’s recommendations with the chart later in
this chapter, compiled from recommendations
from the American Cancer Society (ACS) and
the National Comprehensive Cancer Network
(NCCN).
Chapter 5 Decisions, Decisions, Decisions
In This Chapter
➤ Decisions that are up to you
➤ When—and what—your insurance dictates
➤ Keeping the mind-body connection healthy
➤ Decision-making, the communication process, and your medical team
Some women take offense with the doctors who say, no questions asked, “Here’s what
we’re going to do.” Other women are scared out of their bras to hear the doctor or
surgeon say, “Here are your options. Here are the percentages. Now, what do you want
to do?” Most of us were taught to follow the doctor’s orders. We break a leg, we go to
the doctor, he puts on the right kind of cast, and tells us what we can and cannot do
for the next six weeks. No decisions on our part. We do what we’re told.
Breast cancer, however, doesn’t have quite such an easy fix. In every case, you have
the right to decide who’s going to do what, when, and where. Sometimes, your insur-
ance informs, or even controls, the decisions you make. Still, it’s your decision, even if
your doctor isn’t one of those who asks you what you want to do.
In this chapter, we’ll tell you what choices you can or must make, how to find out if
and how much your insurance is going to pay, and what alternatives will help you
feel more comfortable during treatment. By adding this advice into the mix, you’ll be
prepared—or at least better prepared—to choose from among your options.
➤ Decisions that are up to you
➤ When—and what—your insurance dictates
➤ Keeping the mind-body connection healthy
➤ Decision-making, the communication process, and your medical team
Some women take offense with the doctors who say, no questions asked, “Here’s what
we’re going to do.” Other women are scared out of their bras to hear the doctor or
surgeon say, “Here are your options. Here are the percentages. Now, what do you want
to do?” Most of us were taught to follow the doctor’s orders. We break a leg, we go to
the doctor, he puts on the right kind of cast, and tells us what we can and cannot do
for the next six weeks. No decisions on our part. We do what we’re told.
Breast cancer, however, doesn’t have quite such an easy fix. In every case, you have
the right to decide who’s going to do what, when, and where. Sometimes, your insur-
ance informs, or even controls, the decisions you make. Still, it’s your decision, even if
your doctor isn’t one of those who asks you what you want to do.
In this chapter, we’ll tell you what choices you can or must make, how to find out if
and how much your insurance is going to pay, and what alternatives will help you
feel more comfortable during treatment. By adding this advice into the mix, you’ll be
prepared—or at least better prepared—to choose from among your options.
Survivors’ Advice
Karla, a survivor whose story you read at the beginning of this chapter, told me, “You
have to like and trust your doctor.” Her new doctor “actually calls me at home to see
how I’m feeling when I haven’t called him.” Choosing your medical team is a bit like
choosing your husband. It’s a long-term relationship for better or worse, through sick-
ness and health. So it’s a crucial decision. Your medical team, however, unlike your
husband, isn’t much interested in granting you special wishes. Don’t expect roses on
your birthday. On the other hand, as in any marriage, you can put up with a few
dirty socks on the floor or late nights at the office as long as the overall results work
okay. Your medical team may have some quirks, too (don’t we all?); but if you’re
happy with the overall results, you can probably live with the rest. Nobody’s perfect.
Not everyone seeks out doctors and surgeons on her
own, and not everyone goes for a second opinion,
much less a third. For example, my own surgeon is
a prince of a guy. My primary care provider recom-
mended him to me, and I liked him the minute I met
him. He’s young—30-something—so my only concern
was that maybe he lacked experience. But my hus-
band and I learned that he is a breast cancer specialist,
works out of the local hospital–affiliated breast center,
and is highly respected by others in the specialty.
During appointments, he always gives my husband
and me every minute we need; he answers lists of
questions, sometimes more than once; he never talks
down to us, never tries to sugarcoat the facts, never
skirts an issue. He suggested I might be more comfort-
able with a second opinion; he recommended I see a
radiation oncologist before surgery; and I followed his
recommendations. Meanwhile, I talked to other sur-
vivors, read and checked everything he said against
what I heard and read. It all fit. I felt comfortable.
Who knows why he’s so good at his job. Maybe it’s
learned behavior. His mother is a breast cancer sur-
vivor.
Some survivors have found unusual criteria by which
to judge their medical teams. One woman is con-
vinced that when the medical folks involved her in
what was happening at the moment—what the new
procedure was about, how it would be done, what
would happen next—that she had just enough of a
distraction that she experienced less pain.
Another woman blames her surgeon for literally
promising her that her lump was benign. She had ab-
solutely no preparation for the malignancy. If the sur-
geon had been more objective, she’s convinced she
would have experienced far less emotional turmoil.
Still another survivor complained about the lack of
personal contact from her medical oncologist, that
she was made to feel like just another body getting
the medical recipe of the day. But another survivor
shrugged off the whole idea. After all, she said, the
doctors know more than she does.
Take It or Leave It
We’ve rattled on with advice about choosing your medical team and about second
and third opinions, but the truth of the matter is, you must do whatever makes you
comfortable. If you don’t want to deal with second opinions and feel that your rec-
ommended surgeon is just fine, go with it. If you can’t face up to checking out alter-
native medical folks, don’t add further stress to your already catapulting world.
You have to do what makes you most comfortable.
have to like and trust your doctor.” Her new doctor “actually calls me at home to see
how I’m feeling when I haven’t called him.” Choosing your medical team is a bit like
choosing your husband. It’s a long-term relationship for better or worse, through sick-
ness and health. So it’s a crucial decision. Your medical team, however, unlike your
husband, isn’t much interested in granting you special wishes. Don’t expect roses on
your birthday. On the other hand, as in any marriage, you can put up with a few
dirty socks on the floor or late nights at the office as long as the overall results work
okay. Your medical team may have some quirks, too (don’t we all?); but if you’re
happy with the overall results, you can probably live with the rest. Nobody’s perfect.
Not everyone seeks out doctors and surgeons on her
own, and not everyone goes for a second opinion,
much less a third. For example, my own surgeon is
a prince of a guy. My primary care provider recom-
mended him to me, and I liked him the minute I met
him. He’s young—30-something—so my only concern
was that maybe he lacked experience. But my hus-
band and I learned that he is a breast cancer specialist,
works out of the local hospital–affiliated breast center,
and is highly respected by others in the specialty.
During appointments, he always gives my husband
and me every minute we need; he answers lists of
questions, sometimes more than once; he never talks
down to us, never tries to sugarcoat the facts, never
skirts an issue. He suggested I might be more comfort-
able with a second opinion; he recommended I see a
radiation oncologist before surgery; and I followed his
recommendations. Meanwhile, I talked to other sur-
vivors, read and checked everything he said against
what I heard and read. It all fit. I felt comfortable.
Who knows why he’s so good at his job. Maybe it’s
learned behavior. His mother is a breast cancer sur-
vivor.
Some survivors have found unusual criteria by which
to judge their medical teams. One woman is con-
vinced that when the medical folks involved her in
what was happening at the moment—what the new
procedure was about, how it would be done, what
would happen next—that she had just enough of a
distraction that she experienced less pain.
Another woman blames her surgeon for literally
promising her that her lump was benign. She had ab-
solutely no preparation for the malignancy. If the sur-
geon had been more objective, she’s convinced she
would have experienced far less emotional turmoil.
Still another survivor complained about the lack of
personal contact from her medical oncologist, that
she was made to feel like just another body getting
the medical recipe of the day. But another survivor
shrugged off the whole idea. After all, she said, the
doctors know more than she does.
Take It or Leave It
We’ve rattled on with advice about choosing your medical team and about second
and third opinions, but the truth of the matter is, you must do whatever makes you
comfortable. If you don’t want to deal with second opinions and feel that your rec-
ommended surgeon is just fine, go with it. If you can’t face up to checking out alter-
native medical folks, don’t add further stress to your already catapulting world.
You have to do what makes you most comfortable.
Second—and Third—Opinions
Let’s assume now that you’ve settled on a doctor and/or surgeon. Does that mean
that whatever he or she says is now the gospel? Hardly. Remember, you’re an in-
formed consumer. And doctors, like all the rest of us, think differently: some are more
aggressive, others more conservative. Thus, you may need a second opinion. Or even
a third.
So now you may worry, “Will I offend this doctor if I say I want a second opinion?”
Do you worry about offending the car dealer when you decide you have a better
deal down the street? This is a mega-bunch more important than a new car. And it
will probably cost more.
You may want to begin by getting a second opin-
ion of the pathologist’s report. You have the right
to the slides and lab reports and can take them (or
have them sent) wherever you wish for another
look-see. (Pathologists may be reluctant to let go of
irreplaceable slides, but keep at it until you find a
mutually agreeable means to the end.) After all,
if the pathologist missed something, or misinter-
preted something, everything else changes.
To check on the general quality of pathology work
in your hospital, call the Joint Commission on
Accreditation of Healthcare Organizations
(JCAHO) at 630-792-5000 or check its Web site at
www.jcaho.org. Ask for the hospital’s inspection
report. The reports have been available to the pub-
lic since 1977.
When?
How do you know if you should get a second opinion? You should probably get a sec-
ond opinion if …
➤ You live in a rural area. Of course you can get excellent treatment at small hos-
pitals, but the medical folks there probably aren’t breast cancer specialists and
the hospital may not have the state-of-the-art equipment a large medical center
will have. It’s better to see the specialists. Ask your hometown doctor for a refer-
ral. He or she will understand.
➤ There’s something “borderline” about your condition. For instance, you hear
a statement like “We don’t usually do chemo in a case like yours, but in this in-
stance, I think we should.” Or you hear the converse, like “We usually do a mas-
tectomy in a case like this, but in your situation, I think we shouldn’t.” Better to
check another opinion.
➤ You’re an HMO member. While you can get superb care through an HMO,
know that historically some HMO doctors have been prohibited from telling
their patients about certain expensive treatments and/or those unavailable
through the local HMO. Public outcry has severely reduced the so-called “gag
rule,” but who knows if and where it still exists. Better to find out, even if you
have to pay for the second opinion yourself.
➤ You’ve been given no hope and told there is no further treatment to help
you. Even if a doctor tells you your condition is inoperable or that the type of
cancer you have is untreatable, get another
opinion. There’s a chance that a different doc-
tor may give a different diagnosis, know of an-
other treatment, or decide that your condition
is, after all, operable. It may save your life.
➤ You have a rare cancer. We’ve talked about the
importance of specialists already, and if you
have a rare cancer, you really need a specialist
in your kind of cancer. If the specialist is across
the continent, then perhaps your doctor can at
least consult with him or her via phone, e-mail,
or fax.
You may have other reasons for seeking a second
opinion, and they are probably valid. The most im-
portant issue is that you’re comfortable that you’ve
had the right diagnosis and the right advice about
treatment. (More on making decisions about treat-
ment in Chapter 5, “Decisions, Decisions, Decisions.”)
Who?
If your condition (physical or emotional) warrants a second (or third) opinion, the
next question, of course, is who do you call? If your doctor recommends someone for
a second opinion, this new person probably works closely with your doctor, maybe
thinks the same way, and perhaps even works in the
same clinic, the same hospital, or with the same group
of specialists. What you really want is an independent
doctor, someone completely independent of your doc-
tor. If you live in a small community, it may mean
you have to go out of town, perhaps to a university or
research hospital.
To decide who to see for your second or third opinion,
first call breast cancer survivor friends and medical
folks for recommendations. For instance, surgical
nurses have insights about surgeons that the rest of us
don’t. Or call a breast cancer hotline, the American
Cancer Society, the National Cancer Institute, the
American Society of Clinical Oncology, or your local
medical society for a referral. (See Appendix E, “Infor-
mational Web Sites.”) Call a hospital of your choice
and request a referral to a breast cancer specialist, or
call a local women’s health center.
After you’ve made enough calls, you’ll start hearing certain names pop up more fre-
quently than dandelions in your lawn. When that happens, you’re on your way to
finding the right person for a second opinion.
After you make the appointment, get going with making your list of questions. And
don’t forget to take your notebook with you to the appointment. It’s wise to take a
friend or objective family member who can help take notes. You might even want to
take a tape recorder. Always ask, but no responsible doctor or surgeon will object to
your recording your consultation. Later, you’ll be relieved that you’re able to replay
the conversation to make sure you didn’t miss or misunderstand something. If your
head is spinning anything like mine was, some details just spin off altogether. But not
with the tape recorder. It just spins back the details, as many times as you want.
that whatever he or she says is now the gospel? Hardly. Remember, you’re an in-
formed consumer. And doctors, like all the rest of us, think differently: some are more
aggressive, others more conservative. Thus, you may need a second opinion. Or even
a third.
So now you may worry, “Will I offend this doctor if I say I want a second opinion?”
Do you worry about offending the car dealer when you decide you have a better
deal down the street? This is a mega-bunch more important than a new car. And it
will probably cost more.
You may want to begin by getting a second opin-
ion of the pathologist’s report. You have the right
to the slides and lab reports and can take them (or
have them sent) wherever you wish for another
look-see. (Pathologists may be reluctant to let go of
irreplaceable slides, but keep at it until you find a
mutually agreeable means to the end.) After all,
if the pathologist missed something, or misinter-
preted something, everything else changes.
To check on the general quality of pathology work
in your hospital, call the Joint Commission on
Accreditation of Healthcare Organizations
(JCAHO) at 630-792-5000 or check its Web site at
www.jcaho.org. Ask for the hospital’s inspection
report. The reports have been available to the pub-
lic since 1977.
When?
How do you know if you should get a second opinion? You should probably get a sec-
ond opinion if …
➤ You live in a rural area. Of course you can get excellent treatment at small hos-
pitals, but the medical folks there probably aren’t breast cancer specialists and
the hospital may not have the state-of-the-art equipment a large medical center
will have. It’s better to see the specialists. Ask your hometown doctor for a refer-
ral. He or she will understand.
➤ There’s something “borderline” about your condition. For instance, you hear
a statement like “We don’t usually do chemo in a case like yours, but in this in-
stance, I think we should.” Or you hear the converse, like “We usually do a mas-
tectomy in a case like this, but in your situation, I think we shouldn’t.” Better to
check another opinion.
➤ You’re an HMO member. While you can get superb care through an HMO,
know that historically some HMO doctors have been prohibited from telling
their patients about certain expensive treatments and/or those unavailable
through the local HMO. Public outcry has severely reduced the so-called “gag
rule,” but who knows if and where it still exists. Better to find out, even if you
have to pay for the second opinion yourself.
➤ You’ve been given no hope and told there is no further treatment to help
you. Even if a doctor tells you your condition is inoperable or that the type of
cancer you have is untreatable, get another
opinion. There’s a chance that a different doc-
tor may give a different diagnosis, know of an-
other treatment, or decide that your condition
is, after all, operable. It may save your life.
➤ You have a rare cancer. We’ve talked about the
importance of specialists already, and if you
have a rare cancer, you really need a specialist
in your kind of cancer. If the specialist is across
the continent, then perhaps your doctor can at
least consult with him or her via phone, e-mail,
or fax.
You may have other reasons for seeking a second
opinion, and they are probably valid. The most im-
portant issue is that you’re comfortable that you’ve
had the right diagnosis and the right advice about
treatment. (More on making decisions about treat-
ment in Chapter 5, “Decisions, Decisions, Decisions.”)
Who?
If your condition (physical or emotional) warrants a second (or third) opinion, the
next question, of course, is who do you call? If your doctor recommends someone for
a second opinion, this new person probably works closely with your doctor, maybe
thinks the same way, and perhaps even works in the
same clinic, the same hospital, or with the same group
of specialists. What you really want is an independent
doctor, someone completely independent of your doc-
tor. If you live in a small community, it may mean
you have to go out of town, perhaps to a university or
research hospital.
To decide who to see for your second or third opinion,
first call breast cancer survivor friends and medical
folks for recommendations. For instance, surgical
nurses have insights about surgeons that the rest of us
don’t. Or call a breast cancer hotline, the American
Cancer Society, the National Cancer Institute, the
American Society of Clinical Oncology, or your local
medical society for a referral. (See Appendix E, “Infor-
mational Web Sites.”) Call a hospital of your choice
and request a referral to a breast cancer specialist, or
call a local women’s health center.
After you’ve made enough calls, you’ll start hearing certain names pop up more fre-
quently than dandelions in your lawn. When that happens, you’re on your way to
finding the right person for a second opinion.
After you make the appointment, get going with making your list of questions. And
don’t forget to take your notebook with you to the appointment. It’s wise to take a
friend or objective family member who can help take notes. You might even want to
take a tape recorder. Always ask, but no responsible doctor or surgeon will object to
your recording your consultation. Later, you’ll be relieved that you’re able to replay
the conversation to make sure you didn’t miss or misunderstand something. If your
head is spinning anything like mine was, some details just spin off altogether. But not
with the tape recorder. It just spins back the details, as many times as you want.
And the Winner Is …
Before you make your final choice, check two more important details. First, does your
insurance cover the services of the doctor and/or surgeon you want? If not, you may
need to reconsider. Second, talk to survivors—particularly those whose doctor and/or
surgeon is the one you’re considering. Were they satisfied?
If worse comes to worse and you feel you need another choice, call your state or
county medical societies or local hospital for referrals. Talk to survivors living in your
area. Ask for their recommendations. They have nothing to lose by being perfectly
blunt about their own care.
Finally, if you are willing to travel away from home, say so. Ask for referrals to area
university hospitals or hospitals in nearby larger communities. Keep in mind, how-
ever, that you will continue to travel to and from your treatment center for about a
year, and then follow-up visits continue afterward for as long as five years. If you
choose to get treatment away from home, be prepared to commit to added burdens,
including …
➤ Travel (perhaps in poor weather conditions and frequently during very early or
very late hours)
➤ Time (including hours on the road and nights away from home)
➤ Effort (even when you’re nauseated, exhausted, and would rather be cuddled in
your own bed)
➤ Finances (including cost of transportation, lodging, meals, and long-distance
phone calls)
➤ Loneliness (being in strange surroundings away from close proximity of friends
and family)
Still, this is your life at stake. Maybe travel, time, effort, finances, and loneliness
aren’t really big issues in your situation. In fact, the battle against breast cancer in-
cludes numerous little side skirmishes, and maybe travel-related hurdles are just
that—inconvenient skirmishes. Our only job is to let you know your options so that
you can make choices wisely, and with your eyes open. That way, you’ll arrive on the
battlefield fully prepared.
insurance cover the services of the doctor and/or surgeon you want? If not, you may
need to reconsider. Second, talk to survivors—particularly those whose doctor and/or
surgeon is the one you’re considering. Were they satisfied?
If worse comes to worse and you feel you need another choice, call your state or
county medical societies or local hospital for referrals. Talk to survivors living in your
area. Ask for their recommendations. They have nothing to lose by being perfectly
blunt about their own care.
Finally, if you are willing to travel away from home, say so. Ask for referrals to area
university hospitals or hospitals in nearby larger communities. Keep in mind, how-
ever, that you will continue to travel to and from your treatment center for about a
year, and then follow-up visits continue afterward for as long as five years. If you
choose to get treatment away from home, be prepared to commit to added burdens,
including …
➤ Travel (perhaps in poor weather conditions and frequently during very early or
very late hours)
➤ Time (including hours on the road and nights away from home)
➤ Effort (even when you’re nauseated, exhausted, and would rather be cuddled in
your own bed)
➤ Finances (including cost of transportation, lodging, meals, and long-distance
phone calls)
➤ Loneliness (being in strange surroundings away from close proximity of friends
and family)
Still, this is your life at stake. Maybe travel, time, effort, finances, and loneliness
aren’t really big issues in your situation. In fact, the battle against breast cancer in-
cludes numerous little side skirmishes, and maybe travel-related hurdles are just
that—inconvenient skirmishes. Our only job is to let you know your options so that
you can make choices wisely, and with your eyes open. That way, you’ll arrive on the
battlefield fully prepared.
They’ve Seen It All
Ideally, you’d like an experienced medical team that’s
seen and done everything. You want to know that
they have a broad range of experience, to be assured
your treatment is not a first for them, that they know
what to expect of your diagnosis, and exactly how to
deal with it. Breast cancer specialists who work with
the condition every day certainly have more experi-
ence than those who deal with only a few cases a year.
Still, there’s more to experience than simply the num-
ber of years they’ve been in practice. You’d like to
know your medical team keeps up with the latest ad-
vances, the hottest news, the best treatments, and the
finest procedures. You’d like to know that their equip-
ment is state of the art and that their knowledge is,
too. Since these are not certifiable details, you may
discover them only by comparing what you’ve read
and learned with what these folks tell you. Judge by
the answers to your questions.
Ideally, you’d like an experienced medical team that’s
seen and done everything. You want to know that
they have a broad range of experience, to be assured
your treatment is not a first for them, that they know
what to expect of your diagnosis, and exactly how to
deal with it. Breast cancer specialists who work with
the condition every day certainly have more experi-
ence than those who deal with only a few cases a year.
Still, there’s more to experience than simply the num-
ber of years they’ve been in practice. You’d like to
know your medical team keeps up with the latest ad-
vances, the hottest news, the best treatments, and the
finest procedures. You’d like to know that their equip-
ment is state of the art and that their knowledge is,
too. Since these are not certifiable details, you may
discover them only by comparing what you’ve read
and learned with what these folks tell you. Judge by
the answers to your questions.
a biopsy to hundreds of patients, this is the first time they’ve explained it to you.
Those are the kind of medical professionals you’re looking for: the professionals who
seem to have had better training in communications or better upbringing with good
manners than their less sensitive counterparts.
You should look for someone who is perfectly
straightforward with you—not cold and imper-
sonal, but honest and frank. You’re into serious
business here, so you can skip the sugar coating.
You need—and have every right—to understand
precisely your condition and your prognosis. Still,
doctors are human, too. They may find it emo-
tionally tough to give you bad news, especially if
you’re having a tearful time dealing with the news.
Then, in spite of their best intentions, they may
hold back a little, trying to regain composure
themselves.
You want someone who will help educate you, to help you understand the techni-
cally complicated medical details they will be discussing with you. You want someone
who will answer your questions—even the same ones over and over—until you fully
understand. But watch out for medical folks who want you to leave it all up to them.
You’re a big part of the decision-making process, and any doctor who glosses over
your role should get a glossy photo of you—as you walk out the door.
seen and done everything. You want to know that
they have a broad range of experience, to be assured
your treatment is not a first for them, that they know
what to expect of your diagnosis, and exactly how to
deal with it. Breast cancer specialists who work with
the condition every day certainly have more experi-
ence than those who deal with only a few cases a year.
Still, there’s more to experience than simply the num-
ber of years they’ve been in practice. You’d like to
know your medical team keeps up with the latest ad-
vances, the hottest news, the best treatments, and the
finest procedures. You’d like to know that their equip-
ment is state of the art and that their knowledge is,
too. Since these are not certifiable details, you may
discover them only by comparing what you’ve read
and learned with what these folks tell you. Judge by
the answers to your questions.
Ideally, you’d like an experienced medical team that’s
seen and done everything. You want to know that
they have a broad range of experience, to be assured
your treatment is not a first for them, that they know
what to expect of your diagnosis, and exactly how to
deal with it. Breast cancer specialists who work with
the condition every day certainly have more experi-
ence than those who deal with only a few cases a year.
Still, there’s more to experience than simply the num-
ber of years they’ve been in practice. You’d like to
know your medical team keeps up with the latest ad-
vances, the hottest news, the best treatments, and the
finest procedures. You’d like to know that their equip-
ment is state of the art and that their knowledge is,
too. Since these are not certifiable details, you may
discover them only by comparing what you’ve read
and learned with what these folks tell you. Judge by
the answers to your questions.
a biopsy to hundreds of patients, this is the first time they’ve explained it to you.
Those are the kind of medical professionals you’re looking for: the professionals who
seem to have had better training in communications or better upbringing with good
manners than their less sensitive counterparts.
You should look for someone who is perfectly
straightforward with you—not cold and imper-
sonal, but honest and frank. You’re into serious
business here, so you can skip the sugar coating.
You need—and have every right—to understand
precisely your condition and your prognosis. Still,
doctors are human, too. They may find it emo-
tionally tough to give you bad news, especially if
you’re having a tearful time dealing with the news.
Then, in spite of their best intentions, they may
hold back a little, trying to regain composure
themselves.
You want someone who will help educate you, to help you understand the techni-
cally complicated medical details they will be discussing with you. You want someone
who will answer your questions—even the same ones over and over—until you fully
understand. But watch out for medical folks who want you to leave it all up to them.
You’re a big part of the decision-making process, and any doctor who glosses over
your role should get a glossy photo of you—as you walk out the door.
Dr. Who?
To help you with your battle against breast cancer, you’ll have a team of medical
specialists, part of whom may already be in place. Your primary provider, family doc-
tor, or gynecologist probably sent you for your mam-
mogram. A radiologist read this x-ray, and when it
showed something suspicious, a radiologist—perhaps
the same one—did a biopsy. If the biopsy showed
a pre-cancerous or cancerous condition, you were
probably referred to a breast surgeon. Then there’s the
medical oncologist, the radiation oncologist, the plastic
surgeon, and all their respective nursing and associated
staff. It’s quite a team.
Choosing a doctor/surgeon is a rather daunting task
on a good day, but in the midst of the post-diagnosis
chaos—well, it’s plain overwhelming. And knowing
that you’ll have multiple decisions to make about a
whole team of medical specialists may cause a mo-
ment of panic. Then, in the midst of that panic, you
realize that you’re about to meet a total stranger who,
in the next few days or weeks, is probably going to
do something fairly drastic to your body. But never
fear! We have solid suggestions for making the right
choices.
Of course you want the best medical care you can get. Take the surgeon, for instance.
It’s a one-shot deal with this surgery, and it’s your life lying there on the table under
this person’s knife. If he or she is going to take out part of your breast—or take off all
of it—you need someone whom you can trust, someone with whom you can talk eas-
ily, and someone who has the time to listen to and answer your questions.
There are lots of surgeons, and all of them are trained to perform breast surgery.
There are far fewer surgeons who specialize in breast surgery, but that’s probably who
you want for your surgeon. The specialists are the folks with the most experience and,
in all likelihood, with the most up-to-date knowledge about breast cancer in its many
forms. If they perform lots of breast surgeries, they will also be far more able to iden-
tify individual differences, namely yours. Just for a ballpark figure, try to find a sur-
geon who does at least 50 breast surgeries a year.
Say What? Trust and Tact
How do you find a good medical team? Where do you begin? One common practice
is for your primary care provider to recommend a surgeon who in turn recommends
the rest of the team. But your doctors may handle the process differently, and part of
the procedure is dependent on your insurance carrier. Nevertheless, rest assured that
you will have one or more recommendations readily available.
How do you know if you want to follow the recommendation? Three big issues tell
the story: licensing, experience, and personality.
Certificates on the Wall
Your first concern, of course, is your doctor’s or surgeon’s credentials. Sure, they’ve
graduated from some medical college and have a license to practice in your state.
What you don’t know is whether they graduated at the top of the class or the bot-
tom, and the diploma won’t tell you. But there are other sources.
Generally, your best choice for a surgeon is one certified by the American Board of
Surgery. You can check by calling The American Board of Medical Specialists at 847-
491-9091 or by checking its Web site at www.abms.org. If your recommended surgeon
has been practicing long enough, he or she may have earned credibility with other
organizations as well, so ask about membership in the American College of Surgeons
and the Society of Surgical Oncology, two organizations that work jointly to develop
standards for breast cancer surgeries.
For other specialists, ask about board certification in their specialty (such as radiation
oncology) and then in their subspecialty (breast cancer). And ask if they’ve earned
the AMA Physician Recognition Award, an indication that they have attended a mini-
mum of 150 hours of continuing education in the past three years. That means they
have been keeping up with the research and new treatments that come out at warp
speed these days.
specialists, part of whom may already be in place. Your primary provider, family doc-
tor, or gynecologist probably sent you for your mam-
mogram. A radiologist read this x-ray, and when it
showed something suspicious, a radiologist—perhaps
the same one—did a biopsy. If the biopsy showed
a pre-cancerous or cancerous condition, you were
probably referred to a breast surgeon. Then there’s the
medical oncologist, the radiation oncologist, the plastic
surgeon, and all their respective nursing and associated
staff. It’s quite a team.
Choosing a doctor/surgeon is a rather daunting task
on a good day, but in the midst of the post-diagnosis
chaos—well, it’s plain overwhelming. And knowing
that you’ll have multiple decisions to make about a
whole team of medical specialists may cause a mo-
ment of panic. Then, in the midst of that panic, you
realize that you’re about to meet a total stranger who,
in the next few days or weeks, is probably going to
do something fairly drastic to your body. But never
fear! We have solid suggestions for making the right
choices.
Of course you want the best medical care you can get. Take the surgeon, for instance.
It’s a one-shot deal with this surgery, and it’s your life lying there on the table under
this person’s knife. If he or she is going to take out part of your breast—or take off all
of it—you need someone whom you can trust, someone with whom you can talk eas-
ily, and someone who has the time to listen to and answer your questions.
There are lots of surgeons, and all of them are trained to perform breast surgery.
There are far fewer surgeons who specialize in breast surgery, but that’s probably who
you want for your surgeon. The specialists are the folks with the most experience and,
in all likelihood, with the most up-to-date knowledge about breast cancer in its many
forms. If they perform lots of breast surgeries, they will also be far more able to iden-
tify individual differences, namely yours. Just for a ballpark figure, try to find a sur-
geon who does at least 50 breast surgeries a year.
Say What? Trust and Tact
How do you find a good medical team? Where do you begin? One common practice
is for your primary care provider to recommend a surgeon who in turn recommends
the rest of the team. But your doctors may handle the process differently, and part of
the procedure is dependent on your insurance carrier. Nevertheless, rest assured that
you will have one or more recommendations readily available.
How do you know if you want to follow the recommendation? Three big issues tell
the story: licensing, experience, and personality.
Certificates on the Wall
Your first concern, of course, is your doctor’s or surgeon’s credentials. Sure, they’ve
graduated from some medical college and have a license to practice in your state.
What you don’t know is whether they graduated at the top of the class or the bot-
tom, and the diploma won’t tell you. But there are other sources.
Generally, your best choice for a surgeon is one certified by the American Board of
Surgery. You can check by calling The American Board of Medical Specialists at 847-
491-9091 or by checking its Web site at www.abms.org. If your recommended surgeon
has been practicing long enough, he or she may have earned credibility with other
organizations as well, so ask about membership in the American College of Surgeons
and the Society of Surgical Oncology, two organizations that work jointly to develop
standards for breast cancer surgeries.
For other specialists, ask about board certification in their specialty (such as radiation
oncology) and then in their subspecialty (breast cancer). And ask if they’ve earned
the AMA Physician Recognition Award, an indication that they have attended a mini-
mum of 150 hours of continuing education in the past three years. That means they
have been keeping up with the research and new treatments that come out at warp
speed these days.
Chapter 4 Taking Their Word for It
In This Chapter
➤ Choosing your doctor and/or surgeon
➤ When—and if—to get another opinion
➤ What the survivors tell you
➤ What’s right for you
One survivor put it bluntly: “It’s important to find a doctor you really, really like and
trust. He or she is going to lead you through some very unpleasant stuff, and attitude
plays an important role in how well you tolerate it. It also plays a role in your willing-
ness to follow through and be compliant.”
Never forget this important tenet: You are the employer and the folks on your health-
care team are your employees. As an informed consumer, you make the decisions
about your medical care. The overwhelming majority of healthcare folks are caring,
compassionate, supportive men and women who entered their profession because
they have a burning desire to help us get and stay healthy. But occasionally, the odd
one out comes into your life. What do you do?
In this chapter, we’ll show you some of the factors involved in creating a good
patient-doctor partnership, getting a second or third opinion (even in a good rela-
tionship), and finding ways to make the partnership work.
➤ Choosing your doctor and/or surgeon
➤ When—and if—to get another opinion
➤ What the survivors tell you
➤ What’s right for you
One survivor put it bluntly: “It’s important to find a doctor you really, really like and
trust. He or she is going to lead you through some very unpleasant stuff, and attitude
plays an important role in how well you tolerate it. It also plays a role in your willing-
ness to follow through and be compliant.”
Never forget this important tenet: You are the employer and the folks on your health-
care team are your employees. As an informed consumer, you make the decisions
about your medical care. The overwhelming majority of healthcare folks are caring,
compassionate, supportive men and women who entered their profession because
they have a burning desire to help us get and stay healthy. But occasionally, the odd
one out comes into your life. What do you do?
In this chapter, we’ll show you some of the factors involved in creating a good
patient-doctor partnership, getting a second or third opinion (even in a good rela-
tionship), and finding ways to make the partnership work.
And the Survivors Say …
After you’re brain dead from reading stacks of print and bleary-eyed from Web brows-
ing, you’ll probably want someone to talk to, to listen, to answer questions, to serve
as a sounding board. Whatever the case, survivors are ready to help. (For more about
connecting with other survivors, see Chapter 17, “Groupies: Yea or Nay?”) How can
you hook up with someone to talk with? Try some of these steps:
1. Call your local chapter of the American Cancer Society. The number is in the
business White Pages. Tell them you need to talk, and they’ll connect you with
a volunteer.
2. Call one of the national support groups, like Reach to Recovery (part of the
American Cancer Society) or Y-Me (phone numbers given previously), and ask
about a local chapter. They’ll connect you with survivors.
3. Ask at your doctor’s office for someone to talk to. They may connect you with
a survivor volunteer or one of the nurses. Nurses usually have more time than
doctors do to answer questions and listen to concerns.
4. Call your local hospital and ask for Patient Services. Tell them you need some-
one to talk to. They’ll help.
5. Call someone you know who’s been through the battle, even if you don’t know
her (or him) well and especially if she’s been through it recently. Treatments
have changed dramatically over the last few years, so hook up with someone
who’s familiar with the how of now.
6. Finally, ask your healthcare professional to provide you with a password to CHESS
(Comprehensive Health Enhancement Support System), a University of Wisconsin
site that includes information, case studies, and a discussion group. The password
ensures confidentiality and is available through any provider with a license to
CHESS. (Call 1-800-361-5481 or 1-888-553-5036 for more information.)
Armed with all the details from hotlines, books and magazines, and the information
superhighway, and with your survivor’s notebook as your log, you’ll be an informed
consumer confidently speaking an all-new vocabulary. As a result, you’ll be far better
prepared to join the new world of the battlefield and to march toward successful
treatment.
ing, you’ll probably want someone to talk to, to listen, to answer questions, to serve
as a sounding board. Whatever the case, survivors are ready to help. (For more about
connecting with other survivors, see Chapter 17, “Groupies: Yea or Nay?”) How can
you hook up with someone to talk with? Try some of these steps:
1. Call your local chapter of the American Cancer Society. The number is in the
business White Pages. Tell them you need to talk, and they’ll connect you with
a volunteer.
2. Call one of the national support groups, like Reach to Recovery (part of the
American Cancer Society) or Y-Me (phone numbers given previously), and ask
about a local chapter. They’ll connect you with survivors.
3. Ask at your doctor’s office for someone to talk to. They may connect you with
a survivor volunteer or one of the nurses. Nurses usually have more time than
doctors do to answer questions and listen to concerns.
4. Call your local hospital and ask for Patient Services. Tell them you need some-
one to talk to. They’ll help.
5. Call someone you know who’s been through the battle, even if you don’t know
her (or him) well and especially if she’s been through it recently. Treatments
have changed dramatically over the last few years, so hook up with someone
who’s familiar with the how of now.
6. Finally, ask your healthcare professional to provide you with a password to CHESS
(Comprehensive Health Enhancement Support System), a University of Wisconsin
site that includes information, case studies, and a discussion group. The password
ensures confidentiality and is available through any provider with a license to
CHESS. (Call 1-800-361-5481 or 1-888-553-5036 for more information.)
Armed with all the details from hotlines, books and magazines, and the information
superhighway, and with your survivor’s notebook as your log, you’ll be an informed
consumer confidently speaking an all-new vocabulary. As a result, you’ll be far better
prepared to join the new world of the battlefield and to march toward successful
treatment.
Breast cancer Resources
Timely if You Have the Time
Magazines carry the most up-to-the-minute information, but you may spend hours
searching before you find something worth reading. If you have the time, however,
check your library’s periodical index (it may be online, on CD-ROM, or in print), but
consider the same advice we gave previously: Anything
more than a couple of years old is probably too old to
be meaningful. And anything really vital that is older
than that will be in the newest books as well.
Bookstore Shelves
If your library lacks recent titles, your next stop should
be your local bookstore. Usually, the books on women’s
health are categorized by type, so look for the section
on breast cancer. If the section isn’t obvious, ask.
Before you take home any book, browse through it.
Study the table of contents. Check the index. Do you
find there are topics about which you have questions?
Then skim a chapter. Does it answer your questions?
Does it footnote its sources so you can read more about
a specific issue that interests you? Does it have a tone
and style that you find easy to read, or at least acces-
sible?
Books from Dot Com
If you don’t find what you need in your local bookstore, or if you live in a commu-
nity too small to offer adequate selections, turn to the Internet. Visit online book-
stores like Amazon.com or Barnes and Noble at bn.com. Their online search engines
will retrieve relevant titles.
Web Site Browsing
Another way to access current information is through the Internet. If you’re afraid
you’ll get tangled in the Web, now’s the time to overcome your fears. And before you
cry that you don’t have access to the Web, remember that most public libraries offer
access, friends will likely let you browse, public schools sometimes let community
members log on, and state universities usually allow community members access to
their facilities (after all, you paid for it).
Yes, I know the Internet can be daunting. Your frustration level is fairly high right
now anyway, and we don’t want a Web search to reduce you to tears. So consider this
advice:
First, check known Web sites. We’ve listed a bundle of them in Appendix E, but our
top 20 are the following, arranged in alphabetical order. Most of them have links to
other good sites as well.
➤ American Cancer Society offers information, outreach, and policy statements at
www.cancer.org.
➤ American Cancer Society’s Breast Cancer Network offers information and out-
reach at www.cancer.org/bcn/bcn.html.
➤ American Society of Plastic Surgeons offers information and resources at www.
plasticsurgery.org.
➤ Association of Cancer Online Resources offers information at www.acor.org/.
➤ Breast Cancer Action offers information and support from a grassroots group
at www.med.Stanford.edu/bca.
➤ Breast Cancer Answers offers information and details about clinical trials at
www.medsch.wisc.edu/bca.
➤ Breast Cancer Information offers information at www.breastcancerinfo.com/.
➤ Cancer Care Inc. offers information, support, and outreach at www.
cancercareinc.org/.
➤ Department of Defense Breast Cancer Decision Guide offers an online guide for
making informed decisions at www.bcdg.com.
➤ Johns Hopkins Hospital offers information and resources at www.hopkins.
med.jhu.edu.
➤ Susan G. Komen Breast Cancer Foundation offers information at www.komen.org.
➤ Mayo Clinic offers information at www.mayo.edu.
➤ MD Anderson Cancer Center offers information at www.mdanderson.org.
➤ Memorial Sloan-Kettering Cancer Center offers information at www.mskcc.org.
➤ National Alliance of Breast Cancer Organizations (NABCO) offers information at
www.nabco.org.
➤ National Cancer Institute’s CancerNet Information Service offers information spe-
cific to breast cancer at cancernet.nci.nih.gov/cancer_types/ breast_cancer.shtml.
➤ National Center for Complementary and Alternative Medicine details alternative
treatments at nccam.nih.gov.
➤ National Library of Medicine’s Medline Plus offers information and news at
www.nlm.nih.gov/medlineplus/.
➤ Webmed offers detailed medical information, some of which is accessible by lay
people, at webmed.org.
➤ Y-ME National Breast Cancer Organization offers information and support at
www.y-me.org.
While you’re browsing, keep your notebook handy. As you scroll and click your way
through the sites, you’ll eventually forget where you read something important. If
you’ve taken notes on the Web site addresses, you’ll be able to jump right back to that
Magazines carry the most up-to-the-minute information, but you may spend hours
searching before you find something worth reading. If you have the time, however,
check your library’s periodical index (it may be online, on CD-ROM, or in print), but
consider the same advice we gave previously: Anything
more than a couple of years old is probably too old to
be meaningful. And anything really vital that is older
than that will be in the newest books as well.
Bookstore Shelves
If your library lacks recent titles, your next stop should
be your local bookstore. Usually, the books on women’s
health are categorized by type, so look for the section
on breast cancer. If the section isn’t obvious, ask.
Before you take home any book, browse through it.
Study the table of contents. Check the index. Do you
find there are topics about which you have questions?
Then skim a chapter. Does it answer your questions?
Does it footnote its sources so you can read more about
a specific issue that interests you? Does it have a tone
and style that you find easy to read, or at least acces-
sible?
Books from Dot Com
If you don’t find what you need in your local bookstore, or if you live in a commu-
nity too small to offer adequate selections, turn to the Internet. Visit online book-
stores like Amazon.com or Barnes and Noble at bn.com. Their online search engines
will retrieve relevant titles.
Web Site Browsing
Another way to access current information is through the Internet. If you’re afraid
you’ll get tangled in the Web, now’s the time to overcome your fears. And before you
cry that you don’t have access to the Web, remember that most public libraries offer
access, friends will likely let you browse, public schools sometimes let community
members log on, and state universities usually allow community members access to
their facilities (after all, you paid for it).
Yes, I know the Internet can be daunting. Your frustration level is fairly high right
now anyway, and we don’t want a Web search to reduce you to tears. So consider this
advice:
First, check known Web sites. We’ve listed a bundle of them in Appendix E, but our
top 20 are the following, arranged in alphabetical order. Most of them have links to
other good sites as well.
➤ American Cancer Society offers information, outreach, and policy statements at
www.cancer.org.
➤ American Cancer Society’s Breast Cancer Network offers information and out-
reach at www.cancer.org/bcn/bcn.html.
➤ American Society of Plastic Surgeons offers information and resources at www.
plasticsurgery.org.
➤ Association of Cancer Online Resources offers information at www.acor.org/.
➤ Breast Cancer Action offers information and support from a grassroots group
at www.med.Stanford.edu/bca.
➤ Breast Cancer Answers offers information and details about clinical trials at
www.medsch.wisc.edu/bca.
➤ Breast Cancer Information offers information at www.breastcancerinfo.com/.
➤ Cancer Care Inc. offers information, support, and outreach at www.
cancercareinc.org/.
➤ Department of Defense Breast Cancer Decision Guide offers an online guide for
making informed decisions at www.bcdg.com.
➤ Johns Hopkins Hospital offers information and resources at www.hopkins.
med.jhu.edu.
➤ Susan G. Komen Breast Cancer Foundation offers information at www.komen.org.
➤ Mayo Clinic offers information at www.mayo.edu.
➤ MD Anderson Cancer Center offers information at www.mdanderson.org.
➤ Memorial Sloan-Kettering Cancer Center offers information at www.mskcc.org.
➤ National Alliance of Breast Cancer Organizations (NABCO) offers information at
www.nabco.org.
➤ National Cancer Institute’s CancerNet Information Service offers information spe-
cific to breast cancer at cancernet.nci.nih.gov/cancer_types/ breast_cancer.shtml.
➤ National Center for Complementary and Alternative Medicine details alternative
treatments at nccam.nih.gov.
➤ National Library of Medicine’s Medline Plus offers information and news at
www.nlm.nih.gov/medlineplus/.
➤ Webmed offers detailed medical information, some of which is accessible by lay
people, at webmed.org.
➤ Y-ME National Breast Cancer Organization offers information and support at
www.y-me.org.
While you’re browsing, keep your notebook handy. As you scroll and click your way
through the sites, you’ll eventually forget where you read something important. If
you’ve taken notes on the Web site addresses, you’ll be able to jump right back to that
Read All About It!
Maybe the hotline answered your most immediate questions, but you need more de-
tails than chitchat can deliver. Now it’s time to hit the books. Before you think you
can’t go back to those school-day study binges, cheer up. You’ve started in the right
place with this book. We’ll give you a clear, accurate overview of what breast cancer i
all about, help you get a handle on possible treatments and what to expect of each,
and help you prepare for what comes after—after the surgery, after the chemo, after
the radiation. And we’ll do it in what we think—and hope you do, too—is a light,
readable style.
But we’re not medical people. So maybe you want more medical details, or maybe
you just want another point of view. There’s no shortage of information. In fact,
you’ll find more printed pages than you can read in a couple of years (and mean-
while more will hit the bookshelves), so how do you sort through all the volumes
to find what you need?
Stacks and Stacks at the Library
Your doctor or clinic may offer a reading list. Or use Appendix B, “Further Readings,”
for a recommended reading list. Armed with your list, hit the local library. Check the
computer or card catalog and search for the recommended titles. When you locate a
book on the shelf, browse through nearby titles. You may find another treasure. And
never forget to ask the librarian for help. Librarians are absolutely remarkable folks
who have an amazing range of knowledge. Tap into it.
Keep in mind, however, that just because you read a “fact” in a book, doesn’t make it
true. Here are the problems:
➤ On any date, out of date? The library keeps books for years. Since information
about breast cancer and its treatment changes daily, make sure what you’re read-
ing has a recent copyright date. (You’ll find that date in the front pages.) If the
book is more than two years old, leave it.
➤ Authoritative author? While no reputable publisher will knowingly publish in-
accurate information, the author’s background may better tell you what to ex-
pect. If you want a technically serious medical book, choose an author who is
an oncology doctor or surgeon.
➤ Topic or topical? Rather than choosing books about cancer in general or some
cancer treatment in general, go for those that deal with breast cancer specifically
or that at least have substantive sections devoted to breast cancer. Otherwise,
you’re likely to waste hours of time.
tails than chitchat can deliver. Now it’s time to hit the books. Before you think you
can’t go back to those school-day study binges, cheer up. You’ve started in the right
place with this book. We’ll give you a clear, accurate overview of what breast cancer i
all about, help you get a handle on possible treatments and what to expect of each,
and help you prepare for what comes after—after the surgery, after the chemo, after
the radiation. And we’ll do it in what we think—and hope you do, too—is a light,
readable style.
But we’re not medical people. So maybe you want more medical details, or maybe
you just want another point of view. There’s no shortage of information. In fact,
you’ll find more printed pages than you can read in a couple of years (and mean-
while more will hit the bookshelves), so how do you sort through all the volumes
to find what you need?
Stacks and Stacks at the Library
Your doctor or clinic may offer a reading list. Or use Appendix B, “Further Readings,”
for a recommended reading list. Armed with your list, hit the local library. Check the
computer or card catalog and search for the recommended titles. When you locate a
book on the shelf, browse through nearby titles. You may find another treasure. And
never forget to ask the librarian for help. Librarians are absolutely remarkable folks
who have an amazing range of knowledge. Tap into it.
Keep in mind, however, that just because you read a “fact” in a book, doesn’t make it
true. Here are the problems:
➤ On any date, out of date? The library keeps books for years. Since information
about breast cancer and its treatment changes daily, make sure what you’re read-
ing has a recent copyright date. (You’ll find that date in the front pages.) If the
book is more than two years old, leave it.
➤ Authoritative author? While no reputable publisher will knowingly publish in-
accurate information, the author’s background may better tell you what to ex-
pect. If you want a technically serious medical book, choose an author who is
an oncology doctor or surgeon.
➤ Topic or topical? Rather than choosing books about cancer in general or some
cancer treatment in general, go for those that deal with breast cancer specifically
or that at least have substantive sections devoted to breast cancer. Otherwise,
you’re likely to waste hours of time.
Hotlines: Who You Gonna Call?
With your diagnosis in mind, you’re ready to ask questions and search for answers.
Many women turn first to a cancer hotline. Some are local, and if no one told you
about a local hotline when you got your biopsy report, ask your doctor about it now.
Even in small communities without a formal hotline, someone probably has made a
standing offer to talk with newly diagnosed folks about the news.
Other hotlines are national. Some are staffed by survivors, those wonderful women of
the sisterhood who have been where you are today and are now there to support you.
They volunteer their time on the phone lines to help you with whatever questions
you have.
Before you call, write down the questions that you want to ask. Do you want some-
one to help you understand your diagnosis or exactly what the doctor meant when
he said such and such? Or someone to talk to about treatments? Want to hear about
options for reconstruction? Need someone to help you cope now that your husband
has ordered you to “quit that crying”? Want some-
one to help you overcome your fear, even though
the statistics say you shouldn’t be afraid? Need
someone to bolster your spirits? All are typical hot-
line topics. There are no holds barred on what you
can ask, so make a list of your questions, and leave
space after each for the answer.
Okay. List done. Now, whom do you call? Check
out the following popular hotlines, listed in alpha-
betical order, and then turn to Appendix E, “Infor-
mational Web Sites,” for more sources.
➤ American Cancer Society at 1-800-ACS-2345
(1-800-227-2345) where trained cancer in-
formation specialists answer the phone in
English or Spanish, 24 hours a day every day.
At peak calling times, you may be on hold for
a time, but eventually you’ll always speak to a
live person. The specialists can tap into a mas-
sive database, send documents through U.S.
mail or e-mail, refer you to other national re-
sources for support and financial assistance,
and put you in touch with the local ACS of-
fice who in turn can set up an appointment
for you with a Reach to Recovery volunteer.
➤ Susan G. Komen Breast Cancer Foundation
at 1-800-IM-AWARE (1-800-462-9273) on
Monday through Friday, 9:00 to 4:30 (Central
time) connects you with an answering ma-
chine asking you to leave your name and
number. A full-time staff person or a volun-
teer returns your call.
➤ National Cancer Institute’s Cancer
Information Center at 1-800-4-CANCER
(1-800-422-6237) (in English or Spanish)
connects you weekdays from 9:00 to 4:30
(local time) to a certified cancer information
specialist who can send you free, up-to-date
information about cancer, treatments, cancer
research, current clinical trials and coping
with cancer. Because they have 14 offices
across the country serving different regions,
your call is usually answered fairly promptly.
They can also provide referrals for information
from other agencies.
➤ Y-Me Breast Cancer Hotline at 1-800-221-2141
provides information 24 hours, seven days a
week, from trained peer breast cancer survivors,
including help for partners and men survivors.
(For Spanish, call 312-968-9505.) No matter
when you call, you’ll get a live person: no an-
swering machine, no menu. Or, you can e-mail
questions from their Web site at www.y-me.org.
As you talk, take notes. Get names, dates, and times so
you can remember later when and where you picked
up information. When you get off the phone, go over
your notes. Add details to help you remember what
you’ve heard. Then add these pages to your notebook.
After you’ve talked with someone, feel free to call
back. Usually, once you’ve had time to think about
what you’ve learned, or after you’ve talked to some-
one else, you have more questions. No one keeps track
of how many times you call, so go for it.
Many women turn first to a cancer hotline. Some are local, and if no one told you
about a local hotline when you got your biopsy report, ask your doctor about it now.
Even in small communities without a formal hotline, someone probably has made a
standing offer to talk with newly diagnosed folks about the news.
Other hotlines are national. Some are staffed by survivors, those wonderful women of
the sisterhood who have been where you are today and are now there to support you.
They volunteer their time on the phone lines to help you with whatever questions
you have.
Before you call, write down the questions that you want to ask. Do you want some-
one to help you understand your diagnosis or exactly what the doctor meant when
he said such and such? Or someone to talk to about treatments? Want to hear about
options for reconstruction? Need someone to help you cope now that your husband
has ordered you to “quit that crying”? Want some-
one to help you overcome your fear, even though
the statistics say you shouldn’t be afraid? Need
someone to bolster your spirits? All are typical hot-
line topics. There are no holds barred on what you
can ask, so make a list of your questions, and leave
space after each for the answer.
Okay. List done. Now, whom do you call? Check
out the following popular hotlines, listed in alpha-
betical order, and then turn to Appendix E, “Infor-
mational Web Sites,” for more sources.
➤ American Cancer Society at 1-800-ACS-2345
(1-800-227-2345) where trained cancer in-
formation specialists answer the phone in
English or Spanish, 24 hours a day every day.
At peak calling times, you may be on hold for
a time, but eventually you’ll always speak to a
live person. The specialists can tap into a mas-
sive database, send documents through U.S.
mail or e-mail, refer you to other national re-
sources for support and financial assistance,
and put you in touch with the local ACS of-
fice who in turn can set up an appointment
for you with a Reach to Recovery volunteer.
➤ Susan G. Komen Breast Cancer Foundation
at 1-800-IM-AWARE (1-800-462-9273) on
Monday through Friday, 9:00 to 4:30 (Central
time) connects you with an answering ma-
chine asking you to leave your name and
number. A full-time staff person or a volun-
teer returns your call.
➤ National Cancer Institute’s Cancer
Information Center at 1-800-4-CANCER
(1-800-422-6237) (in English or Spanish)
connects you weekdays from 9:00 to 4:30
(local time) to a certified cancer information
specialist who can send you free, up-to-date
information about cancer, treatments, cancer
research, current clinical trials and coping
with cancer. Because they have 14 offices
across the country serving different regions,
your call is usually answered fairly promptly.
They can also provide referrals for information
from other agencies.
➤ Y-Me Breast Cancer Hotline at 1-800-221-2141
provides information 24 hours, seven days a
week, from trained peer breast cancer survivors,
including help for partners and men survivors.
(For Spanish, call 312-968-9505.) No matter
when you call, you’ll get a live person: no an-
swering machine, no menu. Or, you can e-mail
questions from their Web site at www.y-me.org.
As you talk, take notes. Get names, dates, and times so
you can remember later when and where you picked
up information. When you get off the phone, go over
your notes. Add details to help you remember what
you’ve heard. Then add these pages to your notebook.
After you’ve talked with someone, feel free to call
back. Usually, once you’ve had time to think about
what you’ve learned, or after you’ve talked to some-
one else, you have more questions. No one keeps track
of how many times you call, so go for it.
All the World’s a Stage
All kinds of cancer, including breast cancer, are categorized by stage, which generally
indicates how far it has spread, which in turn determines treatment. The higher the
stage, the more aggressive the treatment. So find out at what stage the pathologist
has categorized your cancer. The report may use one of two staging systems, or even
a combination. Here’s a summary of them and what they mean:
The first staging system uses Roman numerals from I through IV, but begins with
Stage 0:
➤ Stage 0: pre-cancerous (in situ) conditions
➤ Stage I: small, localized cancers, usually curable
➤ Stage II: small tumor with positive lymph nodes, or a larger tumor with or with-
out positive lymph nodes
➤ Stage III: large tumor with positive lymph nodes
➤ Stage IV: tumor with obvious metastasis
Another kind of staging uses TNM, referring to Tumor, Nodes, and Metastases. In gen-
eral, here’s what it means:
➤ T refers to the size of the tumor, from T0 through T4, with T0 for in situ condi-
tions and T4 for a very large tumor that has invaded other organs.
➤ N refers to the number of lymph nodes involved, with N0 meaning no positive
nodes and N4 meaning extensive node involvement.
➤ M refers to the amount of metastases, from M0 to M4.
indicates how far it has spread, which in turn determines treatment. The higher the
stage, the more aggressive the treatment. So find out at what stage the pathologist
has categorized your cancer. The report may use one of two staging systems, or even
a combination. Here’s a summary of them and what they mean:
The first staging system uses Roman numerals from I through IV, but begins with
Stage 0:
➤ Stage 0: pre-cancerous (in situ) conditions
➤ Stage I: small, localized cancers, usually curable
➤ Stage II: small tumor with positive lymph nodes, or a larger tumor with or with-
out positive lymph nodes
➤ Stage III: large tumor with positive lymph nodes
➤ Stage IV: tumor with obvious metastasis
Another kind of staging uses TNM, referring to Tumor, Nodes, and Metastases. In gen-
eral, here’s what it means:
➤ T refers to the size of the tumor, from T0 through T4, with T0 for in situ condi-
tions and T4 for a very large tumor that has invaded other organs.
➤ N refers to the number of lymph nodes involved, with N0 meaning no positive
nodes and N4 meaning extensive node involvement.
➤ M refers to the amount of metastases, from M0 to M4.
Tell-All Diagnosis
The first document that goes into your notebook is a
copy of your mammogram report. What does it show?
How has it changed from your previous one(s)? Ask
questions of nurses, doctors, or the radiologist who
wrote the report. Keep asking until you understand
everything there.
The next document is your diagnosis. Exactly what does the doctor say you have?
What kind of cancer? Where is it located? What does the pathologist’s report say? Get
a copy of it; you’re entitled to it. Keep asking questions until you understand exactly
what it means. Here are some general terms for starters:
➤ Ductal carcinoma in situ, lobular cancer in situ, or noninvasive carcinoma.
If your report lists these terms, you have what some medical folks today call
a pre-cancerous condition. The most important detail is the “in situ” or
“noninvasive” part. That means the condition is confined to the milk ducts
(ductal) or the milk lobules (lobular); it hasn’t spread anywhere. Of all the bad
news you can get, this is best.
➤ Invasive or infiltrating. These words will be connected with either “ductal” or
“lobular” and mean that your condition is no longer in situ, but has spread be-
yond the walls of the ducts or lobules.
Most other terms that may appear in your report are labels that tell how an invasive
ductal carcinoma looks: tubular (looks like little tubes), medullary (has the color of
the medulla, or brain tissue), mucinous (has mucus around it), papillary (has little fin-
gers, or papules, that stick out). Other terms, however, may label a rare kind of malig-
nancy, such as inflammatory breast cancer or Paget’s disease.
copy of your mammogram report. What does it show?
How has it changed from your previous one(s)? Ask
questions of nurses, doctors, or the radiologist who
wrote the report. Keep asking until you understand
everything there.
The next document is your diagnosis. Exactly what does the doctor say you have?
What kind of cancer? Where is it located? What does the pathologist’s report say? Get
a copy of it; you’re entitled to it. Keep asking questions until you understand exactly
what it means. Here are some general terms for starters:
➤ Ductal carcinoma in situ, lobular cancer in situ, or noninvasive carcinoma.
If your report lists these terms, you have what some medical folks today call
a pre-cancerous condition. The most important detail is the “in situ” or
“noninvasive” part. That means the condition is confined to the milk ducts
(ductal) or the milk lobules (lobular); it hasn’t spread anywhere. Of all the bad
news you can get, this is best.
➤ Invasive or infiltrating. These words will be connected with either “ductal” or
“lobular” and mean that your condition is no longer in situ, but has spread be-
yond the walls of the ducts or lobules.
Most other terms that may appear in your report are labels that tell how an invasive
ductal carcinoma looks: tubular (looks like little tubes), medullary (has the color of
the medulla, or brain tissue), mucinous (has mucus around it), papillary (has little fin-
gers, or papules, that stick out). Other terms, however, may label a rare kind of malig-
nancy, such as inflammatory breast cancer or Paget’s disease.
The Doctor’s Word
Not knowing—a diagnosis, the meaning of a word, or the potential side effects of a
treatment option—only feeds your anxiety. You feel helpless, hopeless. In this battle,
you are what you know. The more you understand about your diagnosis and recom-
mended treatment, the more you can do to make it successful.
The first step to becoming informed is to understand
your diagnosis. Breast cancer comes in many different
kinds, sizes, and stages, and doctors handle each one
in a different way. When you got the word about the
biopsy report, that moment put your mind in a whirl.
So how can you remember exactly what the doctor or
nurse said? Here’s how.
Survivor’s Notebook
As part of getting informed, start a survivor’s note-
book now. Get a loose-leaf notebook in an easy-to-
carry size. On the inside front cover, create a “Return
To:” box with your name and address so that if you
lose it, the person who finds it can return it to you.
(Even if you’ve never misplaced anything in your life,
the current undue stress may cause you to lose track
of details—like where you put your notebook.) Then,
on the first page, list your doctors’ and nurses’ names
and phone numbers. Use the notebook to keep all the
details about your diagnosis and your treatment: ques-
tions, dates, names, responses, advice, and side effects
of medications or treatments. As you become more in-
formed, you’ll also use it to summarize what you read,
where you read it, and questions you have about it. So
let’s get started.
treatment option—only feeds your anxiety. You feel helpless, hopeless. In this battle,
you are what you know. The more you understand about your diagnosis and recom-
mended treatment, the more you can do to make it successful.
The first step to becoming informed is to understand
your diagnosis. Breast cancer comes in many different
kinds, sizes, and stages, and doctors handle each one
in a different way. When you got the word about the
biopsy report, that moment put your mind in a whirl.
So how can you remember exactly what the doctor or
nurse said? Here’s how.
Survivor’s Notebook
As part of getting informed, start a survivor’s note-
book now. Get a loose-leaf notebook in an easy-to-
carry size. On the inside front cover, create a “Return
To:” box with your name and address so that if you
lose it, the person who finds it can return it to you.
(Even if you’ve never misplaced anything in your life,
the current undue stress may cause you to lose track
of details—like where you put your notebook.) Then,
on the first page, list your doctors’ and nurses’ names
and phone numbers. Use the notebook to keep all the
details about your diagnosis and your treatment: ques-
tions, dates, names, responses, advice, and side effects
of medications or treatments. As you become more in-
formed, you’ll also use it to summarize what you read,
where you read it, and questions you have about it. So
let’s get started.
Chapter 3 Learning a New Vocabulary
In This Chapter
➤ The doctor’s words and what they mean
➤ What the books and periodicals say
➤ Internet information guidelines
➤ Talk, ask, listen, talk
Once you’ve been diagnosed with breast cancer, you’ve entered a brave (or not so
brave) new world. It’s time to hit the information highway and become an informed
consumer. Some folks listen to the doc’s advice and go with it. Nothing wrong with
that, if your doctor has his fingertips on all the up-to-the-minute details about your
particular cancer. If he does, great. But what if he doesn’t? Or what if he tends to pre-
scribe a more aggressive treatment than the standard? Or less aggressive? How do you
know what’s best for you? How do you find out?
Sometimes those who listen to the doc’s advice and go with it wonder later if they did
the right thing. In this age of information, you owe it to yourself to dig up the details.
You have one shot at this, and you don’t want any regrets. The best news is that you
don’t have to dig very far, and you start here. In this chapter, we’ll tune in to what
the doctor’s words mean, how to find more information about your diagnosis and op-
tions, what to read—and what to skip—and how to learn from the sisterhood.
➤ The doctor’s words and what they mean
➤ What the books and periodicals say
➤ Internet information guidelines
➤ Talk, ask, listen, talk
Once you’ve been diagnosed with breast cancer, you’ve entered a brave (or not so
brave) new world. It’s time to hit the information highway and become an informed
consumer. Some folks listen to the doc’s advice and go with it. Nothing wrong with
that, if your doctor has his fingertips on all the up-to-the-minute details about your
particular cancer. If he does, great. But what if he doesn’t? Or what if he tends to pre-
scribe a more aggressive treatment than the standard? Or less aggressive? How do you
know what’s best for you? How do you find out?
Sometimes those who listen to the doc’s advice and go with it wonder later if they did
the right thing. In this age of information, you owe it to yourself to dig up the details.
You have one shot at this, and you don’t want any regrets. The best news is that you
don’t have to dig very far, and you start here. In this chapter, we’ll tune in to what
the doctor’s words mean, how to find more information about your diagnosis and op-
tions, what to read—and what to skip—and how to learn from the sisterhood.
The Least You Need to Know
➤ You do not owe anyone the personal, intimate details about your illness. You
choose what you want to share, when, and with whom.
➤ Try to compose yourself before telling others. They will pick up and reflect
your state of mind.
➤ While there are general things to keep in mind when breaking the news, also
think of specific concerns that different people will have.
➤ Seek professional help from those who know or have been there in helping
you decide how to break the news.
choose what you want to share, when, and with whom.
➤ Try to compose yourself before telling others. They will pick up and reflect
your state of mind.
➤ While there are general things to keep in mind when breaking the news, also
think of specific concerns that different people will have.
➤ Seek professional help from those who know or have been there in helping
you decide how to break the news.
A Final Word to the Wise
When we decide to share our news of being diagnosed with breast cancer, we have
the very best intentions in how we relate it to others. And although our intentions
are good, it does not mean that we will always be successful. No matter how long we
have thought it through or how carefully we have selected our words, we still may
not be able to help those around us cope or even understand.
If this is your case, don’t hesitate to ask for professional help. Find a counselor who
specializes in sharing this kind of news with partners or children. They may be more
aware of what a child’s or partner’s need is, how to relate the information so that it
doesn’t terrify or worry them, and even what to expect from them down the road.
Someone in a support group, a physician, or a member of a cancer society may be
able to recommend a counselor with this type of expertise.
You don’t want to suffer any more than you have to, and neither do your loved ones.
This may be the most important ounce of prevention in your cure.
the very best intentions in how we relate it to others. And although our intentions
are good, it does not mean that we will always be successful. No matter how long we
have thought it through or how carefully we have selected our words, we still may
not be able to help those around us cope or even understand.
If this is your case, don’t hesitate to ask for professional help. Find a counselor who
specializes in sharing this kind of news with partners or children. They may be more
aware of what a child’s or partner’s need is, how to relate the information so that it
doesn’t terrify or worry them, and even what to expect from them down the road.
Someone in a support group, a physician, or a member of a cancer society may be
able to recommend a counselor with this type of expertise.
You don’t want to suffer any more than you have to, and neither do your loved ones.
This may be the most important ounce of prevention in your cure.
A Tear to the Eye
I was speaking at a luncheon. During the meal, I began a conversation with the lady
next to me. When she asked me about my current project, I mentioned the book. She
told our table a story that put tears in everyone’s eyes.
A single working mother in her town found out she had breast cancer. Her family and
estranged ex-husband were several states away, and she knew she was going to need
help. She got a baby-sitter for her children and asked all of her friends to join her for
dinner at a local restaurant. After dinner, she told her friends that she had breast can-
cer and explained the treatments and timing of her disease. She said she needed their
help desperately.
They made a list of all the things they could do for her and then created a schedule.
For the next 12 months they were there with her and for her every step of the way.
Whatever she needed, they did.
This group of fiends gained such a sense of fulfillment out of helping that they
formed a special group. When any woman in their town was diagnosed with cancer,
they rallied together, found out what the person’s needs were, and helped out for as
long as it took. Now that’s a support group!
When you are single, alone, and in need, friends are a special gift. And, never forget
that you reap what you sow. There will be a time when you will need to help them.
Most of our family and friends are the mainstays of our lives. Where would we be
without them? They are there for picnics, weddings, graduations, birthdays, and—
more important—the little, normal, everyday things. Family and friends are the peo-
ple we not only share our joys with but also our sorrows. Family and friends help us
double the joys we share and cut the sorrows in half. Family and friends can be a big
help in dealing with and getting through breast cancer.
next to me. When she asked me about my current project, I mentioned the book. She
told our table a story that put tears in everyone’s eyes.
A single working mother in her town found out she had breast cancer. Her family and
estranged ex-husband were several states away, and she knew she was going to need
help. She got a baby-sitter for her children and asked all of her friends to join her for
dinner at a local restaurant. After dinner, she told her friends that she had breast can-
cer and explained the treatments and timing of her disease. She said she needed their
help desperately.
They made a list of all the things they could do for her and then created a schedule.
For the next 12 months they were there with her and for her every step of the way.
Whatever she needed, they did.
This group of fiends gained such a sense of fulfillment out of helping that they
formed a special group. When any woman in their town was diagnosed with cancer,
they rallied together, found out what the person’s needs were, and helped out for as
long as it took. Now that’s a support group!
When you are single, alone, and in need, friends are a special gift. And, never forget
that you reap what you sow. There will be a time when you will need to help them.
Most of our family and friends are the mainstays of our lives. Where would we be
without them? They are there for picnics, weddings, graduations, birthdays, and—
more important—the little, normal, everyday things. Family and friends are the peo-
ple we not only share our joys with but also our sorrows. Family and friends help us
double the joys we share and cut the sorrows in half. Family and friends can be a big
help in dealing with and getting through breast cancer.
Heart to Heart: Telling Your Friends
“A friend in need is a friend indeed.” Those words ring especially true when it comes
to coping with an illness like breast cancer.
For some of you, your friends are closer to you than your family and will want to
help in whatever way they can. Because they are your friends and not your family,
they may be easier to tell. Usually, friends are not as close as family, and this little bit
of distance may make it easier for friends to cope.
Just as your family members acted differently, so will your friends. Because your
friends are probably the same age and gender as you are, the way they are affected
may be different than family members. They may be thinking that this could happen
to them, too. And it could!
When it comes to telling friends, you might try remembering the five Ws and H you
learned in writing class: who, what, when, where, why, and how. We already know
the who (you and the individual you’re ready to tell) and what (that you have
cancer).
➤ When. Tell your friends when you both have some down time. Trying to relate
difficult information when someone is answering phones or caring for unruly
children or running off to meetings is not a good time. You want your friend to
be able to focus on what you’re saying.
➤ Where. Where do you want your friend to be when he or she learns your news?
At a computer screen looking at an impersonal e-mail? Probably not. Face-to-
face in a comfortable, private place is best, with a phone call at home running a
close second. You have the ability to tune in on their tone of voice or facial ex-
pressions. This helps you determine the path you want to take when it comes to
how much information they can handle.
➤ Why. Hiding information from friends, the people who know you so well, will
be difficult. You may also want to forewarn them about mammograms and BSEs.
You may need help. Friends do for one another. Now you may need them to do
special things for you.
All that said, telling your friends individually is
probably a good idea. Think, up front, of each
friend and how they might react to this type of
crisis. With some you can be blunt and rely on
their strength to handle the news. With others you
may have to break the news gently and be ready
for tears.
Your multitasking friends will want to help. Once
they have the news and know what you need, they
can shop for both of you when they are at the
store, pick up your kids when they are picking up
theirs, and take care of your kids when they are
taking care of theirs.
The most important thing friends can do is listen.
When you are scared, sad, or disappointed or when
someone in your family has accidentally said some-
thing to hurt you, you can turn to your friend.
to coping with an illness like breast cancer.
For some of you, your friends are closer to you than your family and will want to
help in whatever way they can. Because they are your friends and not your family,
they may be easier to tell. Usually, friends are not as close as family, and this little bit
of distance may make it easier for friends to cope.
Just as your family members acted differently, so will your friends. Because your
friends are probably the same age and gender as you are, the way they are affected
may be different than family members. They may be thinking that this could happen
to them, too. And it could!
When it comes to telling friends, you might try remembering the five Ws and H you
learned in writing class: who, what, when, where, why, and how. We already know
the who (you and the individual you’re ready to tell) and what (that you have
cancer).
➤ When. Tell your friends when you both have some down time. Trying to relate
difficult information when someone is answering phones or caring for unruly
children or running off to meetings is not a good time. You want your friend to
be able to focus on what you’re saying.
➤ Where. Where do you want your friend to be when he or she learns your news?
At a computer screen looking at an impersonal e-mail? Probably not. Face-to-
face in a comfortable, private place is best, with a phone call at home running a
close second. You have the ability to tune in on their tone of voice or facial ex-
pressions. This helps you determine the path you want to take when it comes to
how much information they can handle.
➤ Why. Hiding information from friends, the people who know you so well, will
be difficult. You may also want to forewarn them about mammograms and BSEs.
You may need help. Friends do for one another. Now you may need them to do
special things for you.
All that said, telling your friends individually is
probably a good idea. Think, up front, of each
friend and how they might react to this type of
crisis. With some you can be blunt and rely on
their strength to handle the news. With others you
may have to break the news gently and be ready
for tears.
Your multitasking friends will want to help. Once
they have the news and know what you need, they
can shop for both of you when they are at the
store, pick up your kids when they are picking up
theirs, and take care of your kids when they are
taking care of theirs.
The most important thing friends can do is listen.
When you are scared, sad, or disappointed or when
someone in your family has accidentally said some-
thing to hurt you, you can turn to your friend.
Folk Tales: Telling Your Parents
Age comes into play when telling your parents about your illness. If your parents are
very old, physically ill, suffering from senility, or living far away, you may decide not
to tell them at all.
If you do decide to tell—and if you’re at all close to your parents we recommend that
you do—understand that the news their child has a life-threatening illness violates
the natural order of things. They are the ones that are supposed to become ill and
face their mortality, not their children.
At the same time, no matter how old you and they are, you’re still their baby, and
most parents want the best for their babies. Breast cancer isn’t the best. It will be diffi-
cult news for them to hear, to accept, and to cope with. The hardest part may be their
feelings of helplessness—for once, there is truly nothing they can do to keep their
child from being hurt.
Another issue to consider is the health and vitality of your parents. If they already
lead sedentary, solitary lives, your news could increase their risk of developing depres-
sion. In this case, the best thing you can do for them is to let them do something for
you! If there are ways that they can help you, please ask. Being active and involved
will help them be part of your recovery.
very old, physically ill, suffering from senility, or living far away, you may decide not
to tell them at all.
If you do decide to tell—and if you’re at all close to your parents we recommend that
you do—understand that the news their child has a life-threatening illness violates
the natural order of things. They are the ones that are supposed to become ill and
face their mortality, not their children.
At the same time, no matter how old you and they are, you’re still their baby, and
most parents want the best for their babies. Breast cancer isn’t the best. It will be diffi-
cult news for them to hear, to accept, and to cope with. The hardest part may be their
feelings of helplessness—for once, there is truly nothing they can do to keep their
child from being hurt.
Another issue to consider is the health and vitality of your parents. If they already
lead sedentary, solitary lives, your news could increase their risk of developing depres-
sion. In this case, the best thing you can do for them is to let them do something for
you! If there are ways that they can help you, please ask. Being active and involved
will help them be part of your recovery.
Age Matters
When you tell your children, do so in an age-appropriate manner. Generally speak-
ing, the younger they are, the more comfort they’ll need. Preschool children need the
KISS (Keep It Simple, Sweetie) approach. Don’t lie to them, but keep it very simple.
Hug them. Let them know there will always be someone around to take care of them.
If it becomes necessary, you may also need to help them understand that death is
a part of life. You can use the loss of a pet, the end of a day, or the withering of a
flower as analogies. Let them tell you how they feel. For the very young, it is frustrat-
ing because they don’t know exactly how to express what they feel. This is a good
time to help them draw or paint what they feel.
School-age children also need a simple approach, but with one addition: They’re sure
to have questions. They’ve probably heard the word cancer, and will be naturally and
sympathetically curious. If you help them understand, they’ll help you in return.
They’ve already begun to see themselves as people. They also see themselves as use-
ful. Let them tell you what they can do to help. They are also much better at putting
words to feelings. If they do have trouble talking to you about your illness, ask them
to write you a letter about what they think and feel.
Teen comes from an Old English word that means “agitation,” and you’ve probably
already discovered how appropriate the word is. Indeed, the teenage years represent a
time of great transition and can be very tough for all involved—even without the ad-
dition of a serious illness. A teen’s life is all about trying to “fit in.” Anything that
causes them to stand out will be vexing. You’ll want to make sure to protect their pri-
vacy. Don’t talk about your illness in front of their friends unless they tell you they
feel comfortable with it.
However, no matter how standoffish or even surly your teens may behave in front of
you, chances are that they are just plain scared.
The biggest reason teens get scared is that they barely have control of their life as it is
and now they could be about to lose a loved one. This problem is so great that some-
times they distance themselves from the parent in order to buffer themselves from
the pain.
They’re also smart enough to understand the concept of genetics, and may be afraid
that if cancer can strike you, it can strike them as well. It may be the first time they
think of themselves as vulnerable in recognizing their own mortality.
The good news is that with age comes knowledge, and an older teen may be able to
understand more difficult concepts when it comes to both the emotional and the
medical challenge you face. A teen will typically ask more in-depth questions than a
younger counterpart, and you’ll be able to answer with more technical and clinical
details.
Finally, do remember that as mature and intelligent as your teens may seem, they are
in fact still children. Try to keep their lives as normal as possible and give them per-
mission not to grieve or to worry, but to live as normal a teenage life as possible.
Gender Bender
Another thing to keep in mind is that your children’s reaction may depend on their
genders. Generally speaking, boys will tend to grieve at the news, to consider the loss
of their mothers. Girls, on the other hand, will identify with their mothers and expe-
rience a mirroring effect, seeing themselves contracting the disease. Consider these
gender issues, especially if your children are teenagers.
If you need more advice, and chances are you will, take the time to consult profes-
sionals about the best ways to break the news to a male or female child.
ing, the younger they are, the more comfort they’ll need. Preschool children need the
KISS (Keep It Simple, Sweetie) approach. Don’t lie to them, but keep it very simple.
Hug them. Let them know there will always be someone around to take care of them.
If it becomes necessary, you may also need to help them understand that death is
a part of life. You can use the loss of a pet, the end of a day, or the withering of a
flower as analogies. Let them tell you how they feel. For the very young, it is frustrat-
ing because they don’t know exactly how to express what they feel. This is a good
time to help them draw or paint what they feel.
School-age children also need a simple approach, but with one addition: They’re sure
to have questions. They’ve probably heard the word cancer, and will be naturally and
sympathetically curious. If you help them understand, they’ll help you in return.
They’ve already begun to see themselves as people. They also see themselves as use-
ful. Let them tell you what they can do to help. They are also much better at putting
words to feelings. If they do have trouble talking to you about your illness, ask them
to write you a letter about what they think and feel.
Teen comes from an Old English word that means “agitation,” and you’ve probably
already discovered how appropriate the word is. Indeed, the teenage years represent a
time of great transition and can be very tough for all involved—even without the ad-
dition of a serious illness. A teen’s life is all about trying to “fit in.” Anything that
causes them to stand out will be vexing. You’ll want to make sure to protect their pri-
vacy. Don’t talk about your illness in front of their friends unless they tell you they
feel comfortable with it.
However, no matter how standoffish or even surly your teens may behave in front of
you, chances are that they are just plain scared.
The biggest reason teens get scared is that they barely have control of their life as it is
and now they could be about to lose a loved one. This problem is so great that some-
times they distance themselves from the parent in order to buffer themselves from
the pain.
They’re also smart enough to understand the concept of genetics, and may be afraid
that if cancer can strike you, it can strike them as well. It may be the first time they
think of themselves as vulnerable in recognizing their own mortality.
The good news is that with age comes knowledge, and an older teen may be able to
understand more difficult concepts when it comes to both the emotional and the
medical challenge you face. A teen will typically ask more in-depth questions than a
younger counterpart, and you’ll be able to answer with more technical and clinical
details.
Finally, do remember that as mature and intelligent as your teens may seem, they are
in fact still children. Try to keep their lives as normal as possible and give them per-
mission not to grieve or to worry, but to live as normal a teenage life as possible.
Gender Bender
Another thing to keep in mind is that your children’s reaction may depend on their
genders. Generally speaking, boys will tend to grieve at the news, to consider the loss
of their mothers. Girls, on the other hand, will identify with their mothers and expe-
rience a mirroring effect, seeing themselves contracting the disease. Consider these
gender issues, especially if your children are teenagers.
If you need more advice, and chances are you will, take the time to consult profes-
sionals about the best ways to break the news to a male or female child.
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