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HORMONE THERAPY
AND CHEMOTHERAPY
Are they right for you?
Early breast cancer
HORMONE THERAPY AND CHEMOTHERAPY
Are they right for you?
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The women in this program were chosen
because their stories show many of the
reasons people have for making different
treatment choices.
They were also chosen because they had
both good and bad results after treatment.
But the mix of women having good and bad
results in this program is not the same as
the mix of good and bad treatment results
in the general population. The limits on the
length of the video made it impossible to
include enough women to represent the
actual proportion of good to bad treatment
results.
Who are the women in this program?
The women who appear in the video are real
people, not actors. They are also quoted in
this booklet. These women volunteered to
share their stories about how they decided
to deal with invasive breast cancer. They
received a small fee for their time. They do
not profit from recommending any treatment
or self-care strategy.
What You Should Know About This Program
3
Contents
Introduction ................................................................... 6
About This Program
6
Is This Information for You?
6
Chance of Cancer Coming Back ....................................
Three Things to Keep in Mind
Recurrence and Metastatic Cancer
What Affects the Chance of Recurrence?
7
7
7
8
Types of Treatment ...................................................... 10
Local Treatments
10
Systemic Treatments
10
Pathology Reports and Other Tests ............................ 11
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Hormone Therapy.........................................................
About Hormone Therapy
Hormone Therapy Before Menopause
Hormone Therapy After Menopause
Possible Benefits of Hormone Therapy
Side Effects of Hormone Therapy Are Similar to
Menopause Symptoms
Benefits and Risks of Hormone Therapy:
A Summary
14
14
14
15
15
Chemotherapy ..............................................................
About Chemotherapy
Possible Benefits of Chemotherapy
Possible Side Effects of Chemotherapy
Chemotherapy Might Affect Thinking and Memory
20
20
21
22
24
16
19
Contents (continued)
Biological Therapy .......................................................
How Biological Therapy Works
Possible Benefits of Herceptin
Possible Side Effects of Herceptin
Rare but Serious Side Effects of Herceptin
25
25
25
25
25
Combining Hormone Therapy and Chemotherapy ... 27
No Additional Treatment............................................. 28
Talking to Others Can Help You with This Decision
28
Tests to Help with This Decision
29
Comparing Treatments ................................................ 30
Working with Your Care Team .................................... 32
Shared Decision-Making
32
Your Care Team
33
Making Your Decision.................................................. 35
Making the Best Decision for You
35
Working with Your Doctor
36
Definitions of Medical Terms ...................................... 37
For More Information .................................................. 40
Research Publications Used to Write This Booklet.... 42
Contents
5
Introduction
About This Program
This video and booklet program is designed
to help you work with your doctor to decide
whether to have additional treatment—
hormone therapy, chemotherapy, biological
therapy, or other medications—after your
breast cancer surgery. This treatment is called
adjuvant therapy. There are good reasons why
you might choose to have one of these treatments, a combination, or none at all.
Is This Information for You?
This information is for women with invasive
breast cancer:
• Who can be treated with surgery and
• Who have not had hormone therapy
or chemotherapy before surgery
(called “neoadjuvant therapy”)
This information is not for:
• Women who were given hormone
therapy or chemotherapy before
surgery
• Women with noninvasive or Stage 0
breast cancer alone, also called
ductal carcinoma in situ (DCIS) or
lobular carcinoma in situ (LCIS)
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• Women with inflammatory breast
cancer
• Women with metastatic breast
cancer—cancer that has spread to
distant parts of the body (beyond
the breast and underarm lymph
nodes)
• Women who are pregnant
If you have questions about whether the
information in this program is right for
you, please talk with your doctor or other
healthcare provider.
Note: Italics are used in this booklet
to emphasize key words or to identify
medical terms. See the Definitions of
Medical Terms section at the end of the
booklet for full descriptions of medical
terms that are italicized.
Chance of Cancer Coming Back
Information in this chapter includes:
• Three Things to Keep in Mind
• Recurrence and Metastatic Cancer
• What Affects the Chance of Recurrence?
The goal of having additional treatment is to
reduce the chance of cancer coming back,
both in the breast and in other parts of the
body.
Three Things to Keep in Mind
Just thinking about cancer coming back can
be difficult, but it may help to keep three
things in mind:
• The cancer may not come back at all.
Ten years after surgery and radiation,
many women will be cancer free even
without more treatment.
• Cancer comes back in different
women at different times. If the
cancer does come back, it might be
years from now.
• Even if cancer comes back, it’s not
necessarily life threatening. When
it is found early and is located just
in the breast area, the cancer can
usually be successfully treated with
more surgery or radiation.
Recurrence and Metastatic Cancer
When cancer comes back it’s called a
recurrence. Recurrence outside the breast
or chest wall area is called metastatic
cancer. Metastatic cancer can sometimes
be controlled, but at this time, there is
no way to cure it.
Additional treatment is intended to help
reduce the chance of cancer coming back,
both in the breast or breast area and
elsewhere in the body.
There are so many factors that weigh
in to what is good for each individual
woman.
—Mary B.
Chance of Cancer Coming Back
7
What Affects the Chance of Recurrence?
Even among women with early breast cancer,
the chance of having cancer come back can
vary widely. Doctors can estimate the chance
based on certain characteristics of the cancer
that are listed in the pathology report, such as
the tumor size and the number of underarm
lymph nodes with cancer in them.
The chance of cancer coming back is lower
when the tumor is smaller and higher when
the tumor is larger. It’s also lower when there
are no lymph nodes with cancer in them and
higher when there are several. This is because
when breast cancer spreads, the cancer cells
often travel first to the lymph nodes under
the arm.
For example, for a woman with a tumor
smaller than 1 centimeter and no positive
lymph nodes, the chance of cancer coming
back is lower than average. For a woman
with two positive lymph nodes and a
2.5-centimeter tumor, the chance is higher
than average. The chart on the right shows
reasonable estimates for women at average
risk as well as women at lower- and higherthan-average risk.
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Number of Women Who Are Cancer Free at 10 Years
with No Additional Treatment
As you can see, cancer does not come back
for many women, even without additional
treatment. However, each case of cancer is
different, and your own risk may be lower
or higher than the examples shown in this
booklet. You can read more about other
information that helps estimate your risk
in the Pathology Reports and Other Tests
chapter.
It’s important to note that the results of
the studies presented in this booklet can’t
predict whether any one woman will be
helped by hormone therapy, chemotherapy,
or biological therapy. Instead, these studies
looked at a large group of women with similar
cancers and how many can be helped by
additional treatments.
In the following chapters you’ll see how
hormone therapy, chemotherapy, and
biological therapy can affect the chance
of cancer coming back, and what side effects
or complications each treatment can have.
Chance of Cancer Coming Back
9
Types of Treatment
There are two major types of treatment for
breast cancer:
• Local treatments
• Systemic treatments
Local Treatments
Local treatments, such as mastectomy or
lumpectomy with radiation, treat the local
breast area only. For many women with
early-stage tumors, local treatment removes
the cancer, and it never comes back. But
sometimes it does, either in the breast area
or in another part of the body.
Systemic Treatments
Systemic treatments reduce the chance that
cancer will come back in the affected breast,
the other breast, or in some other part of
the body.
You might wonder: If systemic treatment
can lower the chance that cancer will come
back, and can save lives, why doesn’t everyone
have it? There are two main reasons:
• Additional treatment makes very
little difference for some women with
early-stage breast cancer.
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• Additional treatments have side
effects—some are mild and go away,
but others can be serious and cause
permanent health problems.
Making a good decision about whether to
have additional treatment depends on how
you feel about:
• How much difference it might make
compared to no treatment at all
• How much you might be bothered by
any side effects from treatment
One woman may feel that any benefit of
more treatment is worthwhile, even if it’s
a small one. Another woman may feel that a
small benefit isn’t worth the chance of having
side effects or complications from treatment.
There is no right or wrong answer. Your
decision will depend on how you feel about
the issues involved.
To learn more about treatments that may
be appropriate for you, see the chapters
on hormone therapy, chemotherapy, and
biological therapy.
Pathology Reports and Other Tests
The characteristics of breast cancer influence
the chance it will come back after initial local
treatments (surgery and radiation). These
characteristics are described in your pathology
report.
After your biopsy and surgery, your doctor
sent the breast tissue and perhaps lymph node
tissue to a pathologist. This specially trained
doctor checked to be sure all the cancer was
removed, and then looked at the cancer. The
results are in your pathology report, which is
usually written in technical medical language.
The information in the pathology report
cannot predict exactly what will happen in
your situation, but you and your doctor can
use the information to:
• Estimate the chance the cancer may
come back
• Decide which treatments might be
most appropriate
• Estimate how much benefit they
might provide
The table on the next two pages provides
some key pieces of information that you might
find in your pathology report.
Pathology Reports and Other Tests 11
Key Parts of a Pathology Report
Gross Description This section describes the color, texture, and size of the tissue that was removed during the biopsy or surgery.
Tumor Size
The pathologist will measure the size of the tumor. Usually the largest dimension is reported as the size.
Margins
The surgical margin is a border of healthy tissue around the tumor. The pathologist examines the tissue to
see if there are any cancer cells near the edges. If there are no cancer cells near the edges, the margins are
called “clear” or “negative” or “uninvolved.” If there are cancer cells at the edges of the tissue, the margins
are called “positive” or “involved.”
Type
Type describes the cancer cells by the kind of normal cells that the tumor cells look most like. Most invasive
breast cancers are described as infiltrating ductal cancers, but there are also infiltrating lobular cancers,
other types of cancer, and various combinations of cancer. Some of these types behave differently from
one another.
Grade
(or Histologic
Grade)
Grade is a description of how abnormal the cells look and how actively they are dividing. The pathologist
studies three key characteristics of the tumor cells and assigns a number to each one. These numbers are
combined into one score that can range from 3 to 9. This score is then translated into a grade from 1 to 3.
A higher grade or score means the cancer cells are very different from normal cells and are more likely to
recur. A lower grade or score means the cancer cells look more like normal cells and are more likely to be
slow growing.
This information, along with information from other tests, can help you and your doctor consider what type
of treatment you may need after your breast cancer surgery.
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Key Parts of a Pathology Report (continued)
Hormone
Receptor Status
Normal breast cells and some cancer cells have receptors for the estrogen and progesterone hormones. Tests
for hormone receptors measure how many of the cancer cells contain these receptors.
• If the cancer cells have many estrogen or progesterone receptors, the pathology report will say that the
tumor is estrogen-receptor-positive (ER-positive) and/or progesterone-receptor-positive (PR-positive).
• If the cancer cells have only a few or none of these receptors, the pathology report will say that the
tumor is ER-negative and PR-negative.
Cancer that is hormone-receptor-positive is more likely than cancer that is hormone-receptor-negative to
respond well to hormone therapy such as tamoxifen and aromatase inhibitors.
HER2/neu
If cancer cells have too many HER2/neu genes or make too much HER2/neu protein, the pathology report
says the tumor “overexpresses” HER2/neu. About 25 out of 100 women with breast cancer have this kind
of tumor. Tumors of this type tend to grow and spread more aggressively than others. But they often
respond to a medication called trastuzumab (Herceptin®), which blocks certain growth proteins from
attaching to cancer cells.
Knowing the tumor’s HER2/neu status can help your doctor determine which type of therapy is most likely
to be effective. A FISH (fluorescence in situ hybridization) test determines if a tumor overexpresses HER2/neu
proteins and can be used on new or older tissue samples.
Lymph Node
Status
If lymph nodes were removed during the surgery, they’ll be checked to see if they contain any cancer
cells. If they do, the report will note the number of positive lymph nodes—how many of them contained
cancer. If they did not contain cancer cells, they are called negative. The chance of cancer coming back is
higher if there are positive lymph nodes (meaning they contain cancer).
Pathology Reports and Other Tests 13
Hormone Therapy
Information in this chapter includes:
• About Hormone Therapy
• Hormone Therapy Before Menopause
• Hormone Therapy After Menopause
• Possible Benefits of Hormone Therapy
• Side Effects of Hormone Therapy Are
Similar to Menopause Symptoms
• Benefits and Risks of Hormone Therapy:
A Summary
About Hormone Therapy
Your pathology report includes information
about whether hormone therapy can be used
to treat your cancer. Specifically, the report
will show whether the cancer is hormonereceptor-positive, which means that hormone
therapy may help prevent cancer cells from
growing. If the cancer does not contain these
receptors, then hormone therapy may not be
helpful.
The biggest piece of information
was finding out that the tumor was
hormonally responsive...
—Betsy C.
14 Health Dialog
There are several types of hormone therapies.
Hormone therapies are usually pills that are
taken daily for several years.
Breast cancer cells need the female hormone
estrogen to survive. Hormone therapies
prevent the cancer cells from making or
using estrogen, so these cells can’t grow.
The type of hormone therapy that a woman
considers will depend on whether she has
gone through menopause.
Hormone Therapy Before Menopause
Before menopause, women’s ovaries produce
a significant amount of estrogen. That’s why
women before the age of menopause have
two main choices:
• Take the medication tamoxifen daily,
for up to 5 years
• Have treatment to stop the ovaries
from producing estrogen (ovarian
suppression or ovarian ablation)
Tamoxifen, commonly known as Nolvadex®,
works inside cancer cells to block the effects
of estrogen. Tamoxifen has been used for
many years, so doctors know a lot about its
possible benefits and side effects.
Another choice for premenopausal women
is to shut down estrogen production in the
ovaries. This can be done with:
• Medication (ovarian suppression) or
• Surgery or radiation
(ovarian ablation)
All these methods will cause women to go
into early menopause.
who are past menopause may choose either
tamoxifen or aromatase inhibitors. Aromatase
inhibitors include:
• Anastrozole (Arimidex®)
• Exemestane (Aromasin®)
• Letrozole (Femara®)
Many doctors now recommend that women
take an aromatase inhibitor before or
following tamoxifen.
Surgery and radiation permanently shut
down the ovaries. Women who have
these treatments will not be able to
have children.
In large studies with several thousand
postmenopausal women, researchers found
that anastrozole seems to be even better
than tamoxifen at lowering the chance that
cancer will come back. Research is ongoing
to see which medications or combinations
of medications might be most effective,
whether the benefits will last, and whether
there are long-term side effects.
Hormone Therapy After Menopause
Possible Benefits of Hormone Therapy
After menopause, women still have estrogen
in the body, but it’s not made by the ovaries
anymore. An enzyme called “aromatase”
converts a substance in the body to estrogen.
Medications called “aromatase inhibitors”
stop the body from making estrogen. Women
On average, hormone therapy can reduce
the chance of cancer coming back by about
50% to 60%, or about half. To see what this
means, round number estimates are used to
compare women who did not take hormone
therapy with women who did take it.
Women who take medication may start having
periods again after stopping treatment, and
may be able to have children.
Hormone Therapy 15
You can see the number of women who
would be cancer free at 10 years after taking
hormone therapy.
Number of Women Who Are Cancer Free at 10 Years
For women with an average chance of cancer coming back
Side Effects of Hormone Therapy Are
Similar to Menopause Symptoms
Hormone therapies block the effect of estrogen
or reduce the amount of estrogen in the body.
As a result, women on hormone therapy may
have side effects similar to the symptoms
some women have around menopause, when
estrogen levels naturally go down.
Most side effects of hormone therapy are mild
and temporary, but some can be more serious.
The most common symptoms include:
• Hot flashes
With no additional treatment, about 76 women out of 100
would be cancer free. With hormone therapy, about 12
more women would be cancer free.
When the chance of cancer coming back is
lower, fewer women are helped. When it’s
higher, more women are helped. Your
chance of cancer may be higher or lower
than the example shown here. In the
Comparing Treatments chapter, you can
see more charts that show how all the
treatments compare for women at higher
and lower risk.
16 Health Dialog
• Vaginal discharge or dryness
• Sexual problems
Your doctor may be able to suggest
medications that can help with hot flashes
and creams that can improve vaginal dryness.
For women who have already gone through
menopause, hormone therapy further lowers
the amount of estrogen in the body, which
may increase these symptoms.
Premenopausal women who have any type of
hormone therapy or surgery that prevents the
ovaries from producing estrogen are more
likely than older women to have problems
with menopause-like symptoms.
Some women try one hormone therapy and
then stop taking it if they experience side
effects they cannot tolerate. At that point, they
may try another hormone therapy.
Possible Side Effects of Tamoxifen
Women who still have their menstrual periods
may find that their periods become lighter or
eventually stop when they take tamoxifen.
Depending on how close a woman is to
menopause, her periods may or may not start
again when she stops taking the medication
(in other words, she may enter menopause).
Several studies have also reported more
serious possible harms, but they are rare,
between 1/2 and 1 extra case for every 100
women who take tamoxifen. Almost all of
these serious possible harms occur in postmenopausal women.
These possible harms include:
• Endometrial cancer, which is cancer
in the lining of the uterus. It is
almost always caught early and may
be cured by surgery.
• Blood clots in the lungs or leg veins.
Most of these are treatable. Although
rare, some do cause death.
• Eye problems, called “cataracts.”
Some of these require surgery.
Tamoxifen does not seem to cause depression
or weight gain. Studies show that women who
take a placebo (a sugar pill) are just as likely
to report these problems as women who take
tamoxifen.
The long-term impact of tamoxifen
hasn’t been negative for me. It’s a pill
that I’ve taken for five years. And for
me, it’s something that is an added
part of my fighting my cancer.
—Patricia B.
Hormone Therapy 17
Possible Side Effects of Aromatase Inhibitors
Some side effects of anastrozole (Arimidex®),
such as hot flashes, are similar to those of
tamoxifen. Other side effects are different,
including:
• Bone or joint pain
• Osteoporosis
• Higher cholesterol levels in
some women
Women taking aromatase inhibitors may need
regular monitoring of their bone health.
Both anastrozole and letrozole (Femara®) may
increase “bad” cholesterol (also called LDL
or low-density lipoproteins). Results of
a large study showed that in women on
hormone therapy, higher cholesterol may be
more common in those taking anastrozole
than in those on tamoxifen.
Compared with tamoxifen, exemestane
(Aromasin®) seems to be less likely to cause
vaginal discharge and blood clots and more
likely to cause osteoporosis. Joint pain and
diarrhea were more common with exemestane.
18 Health Dialog
It’s not yet clear how letrozole and exemestane
affect the chance of endometrial cancer.
Women with health problems, such as
osteoporosis, may want to choose hormone
therapies that are less likely to make such
problems worse.
With any medication, if you notice bothersome side effects, it may help to discuss them
with your doctor. Often there are ways to
relieve side effects or treat problems that result
from the therapies. For example, some women
who choose aromatase inhibitors also take
medications called “bisphosphonates” to help
prevent osteoporosis. Bisphosphonates
include:
• Alendronate (Fosamax®)
• Etidronate (Didronel®)
• Risedronate (Actonel®)
However, these medications may also cause
some side effects such as upset stomach or
flu-like symptoms.
Benefits and Risks of Hormone
Therapy: A Summary
The table below summarizes the benefits,
side effects, and risks of hormone therapy.
Hormone Therapy Benefits, Side Effects, and Risks
Tamoxifen
Aromatase Inhibitors
Ovarian Suppression or Ablation
(Medication or Surgery)
Who’s
Premenopausal and postEligible menopausal women
Postmenopausal women only
Premenopausal women only
Benefits Lowers the chance that cancer will
come back by about 50%
Lowers the chance that cancer will
Lowers the chance that cancer will
come back by about 60%
come back by about 30%
Side
Effects
• Menopause-like symptoms (less
• Menopause-like symptoms.
Menopause-like symptoms, including hot flashes, cold sweats, vaginal
discharge or dryness
often than tamoxifen)
• Vaginal dryness and loss of sex
drive more common with certain
aromatase inhibitors than with
tamoxifen
Serious
Risks
• Small increased risk of
endometrial cancer
• Small increased risk of blood clots
• Small increased risk of cataracts
Immediate estrogen withdrawal
may cause more bothersome
menopause-like symptoms.
• Infertility (may be temporary with
medication)
• Bone or joint pain
Early menopause may put some
• Osteoporosis
women at risk of osteoporosis
• Higher cholesterol with some
medications
and heart disease (although these
risks are also determined by family
history)
Hormone Therapy 19
Chemotherapy
Information in this chapter includes:
• About Chemotherapy
• Possible Benefits of Chemotherapy
• Possible Side Effects of Chemotherapy
• Chemotherapy Might Affect Thinking
and Memory
About Chemotherapy
Chemotherapy involves taking medications
that target cancer cells. These medications
can be:
• Oral medications, usually pills
• Intravenous (IV) medications, in
which a needle is used to deliver
the chemotherapy directly into the
bloodstream over the course of a few
hours. This form of chemotherapy
is usually given in a hospital or
doctor’s office.
• A combination of the two (both pills
and IV)
20 Health Dialog
Chemotherapy is sometimes given in cycles,
with days or weeks off in between to allow the
body to recover. Treatment is usually given for
3 to 6 months.
Chemotherapy can be used to treat all types
of breast cancer; however, it generally works
better on cancers that are hormone-receptornegative.
Since my form of cancer was a little
bit more on the aggressive side than
some of the other cancers, that’s one of
the things that fit into my making the
decision to go for chemotherapy.
—Dorothy B.
Several medications are usually combined in a
standard pattern, which is called a “regimen.”
The regimen is named for the initials of the
combination of medicines.
Common Chemotherapy Regimens
AC
Adriamycin (doxorubicin) and
®
cyclophosphamide
AC followed
by Taxol®
Adriamycin® (doxorubicin),
cyclophosphamide followed by
Taxol® (paclitaxel)
AC followed Adriamycin® (doxorubicin),
by Taxotere® cyclophosphamide followed by
Taxotere® (docetaxel)
CAF
Cyclophosphamide, Adriamycin®
(doxorubicin), and 5-fluorouracil
CMF
Cyclophosphamide, methotrexate, and
5-fluorouracil
TAC
Taxotere® (docetaxel), Adriamycin®
(doxorubicin), and cyclophosphamide
The timing of chemotherapy depends on each
woman’s situation. For example, women who
have a lumpectomy may have chemotherapy
before radiation.
Possible Benefits of Chemotherapy
On average, chemotherapy can reduce the
chance of cancer coming back by about
25%, or by one quarter. Newer chemotherapy
regimens that use more medicines and shorter
treatment cycles reduce the chance that cancer
comes back by about 40%.
The long-term benefits seemed to
outweigh, to me, the short-term
inconvenience and discomfort.
—Alice L.
Chemotherapy seems to work better in
younger women. So, women before the
age of menopause—generally those younger
than 50—may get better results than the
Chemotherapy 21
ones shown in the following chart. Women
older than 70 may benefit from chemotherapy,
especially if they are in good health. However,
older women may not get as large a benefit as
younger women.
coming back is lower, fewer women are
helped. When it’s higher, more are helped. In
the Comparing Treatments chapter, you can see
more charts that show how all the treatments
compare for women at higher and lower risk.
Number of Women Who Are Cancer Free at 10 Years
For women with an average chance of cancer coming back
Possible Side Effects of Chemotherapy
Chemotherapy side effects can be mild or
severe. Most are temporary, but some can be
permanent.
With no additional treatment, about 76 women out of 100
would be cancer free. With chemotherapy, about 6 more
women would be cancer free.
How much chemotherapy might help you
depends upon your age, whether the cancer
has spread to your lymph nodes, and other
characteristics of your cancer.
Keep in mind that your treatment may be
more or less than what is shown here. As with
hormone therapy, when the chance of cancer
22 Health Dialog
Many chemotherapy medications have similar
side effects because they work by killing cells
that are rapidly dividing. This includes the
cancer cells, but also certain healthy cells like
the ones in:
• The roots of hair
• The lining of the mouth, stomach,
and intestines
• Bone marrow that produces
blood cells
That is why the most common side effects of
chemotherapy include hair loss, mouth sores,
nausea (upset stomach), vomiting, and anemia
that can cause fatigue (tiredness).
Nausea and vomiting are less of a problem
now than in the past because there are
medications called “anti-emetics” to help
prevent them. However, these medications
may cause additional fatigue. Needle
acupuncture may also help reduce vomiting
following chemotherapy.
• Mouth sores (interfere with eating in
1% to 3%)
The side effects listed in this chapter are from
the most widely used chemotherapy regimens.
These numbers were taken from large clinical
trials. Researchers have found that women
younger than age 64 and women with other
health issues may have more problems with
chemotherapy side effects. Your doctor
should be able to give you more information
about the possible side effects for the particular regimen that you may be considering.
• Muscle pain (with docetaxel
[Taxotere®] or paclitaxel [Taxol®])
Common Side Effects During Chemotherapy
Treatment
Most of the following side effects are mild or
moderate. They are usually not severe.
• Fatigue (being tired)
• Hair loss
• Nausea and/or vomiting (severe in
5% to 15% of women)
• Diarrhea (severe in 1% to 5%)
• Low blood cell counts that can delay
treatment or lead to reduced doses
(5% to 20%)
• Nerve problems, such as pain,
numbness, tingling, or weakness
(with docetaxel or paclitaxel)
Hair loss, nausea, fatigue were all
things that I could deal with if, in the
long term, it made a difference.
—Jane P.
Long-Term Side Effects of Chemotherapy
• Premature menopause and infertility
• Weight gain (average 5 to 10
pounds)
• Fatigue
• Nerve problems (with docetaxel or
paclitaxel)
Chemotherapy 23
Some fatigue and weight gain are common
after a diagnosis of breast cancer, even among
women who do not take chemotherapy.
Chemotherapy can affect a woman’s ability
to become pregnant. Younger women who
wish to have children may choose to have an
additional surgery to remove their eggs and
have them preserved before undergoing
chemotherapy or surgery to remove the
ovaries.
Rare but Serious Side Effects of
Chemotherapy
• Serious infections that require
treatment in a hospital (1% to 5%).
Most are treatable, but some can be
life threatening.
• Blood clots (1% to 3%)
• Leukemia and other bone marrow
disorders (0.1% to 0.5%; may be
more common with radiation).
Usually fatal.
• Heart problems (1% to 2%, with
doxorubicin [Adriamycin®])
24 Health Dialog
The chance of these serious side effects is
higher in older women and those with serious
health problems.
Chemotherapy Might Affect Thinking
and Memory
Some women have reported that
chemotherapy causes trouble with their
thinking and memory. However, the long-term
effect of chemotherapy on the brain is not well
understood. Women whose thinking and
memory do not improve following treatment
may be helped by certain medications and
rehabilitation programs to improve memory
and decrease fatigue.
Chemo brain, I think I still have it. I
don’t know if that’s a long-term side
effect, but I do feel that I don’t have
the memory I had at one point.
—Dorothy B.
Biological Therapy
Information in this chapter includes:
• How Biological Therapy Works
• Possible Benefits of Herceptin
• Possible Side Effects of Herceptin
• Rare but Serious Side Effects of Herceptin
How Biological Therapy Works
Biological therapy targets cancer cells with
specific biological characteristics, so it is only
for women with a certain kind of tumor called
HER2/neu-positive. This means that the tumor
has too much of a protein called HER2/neu.
About 25 out of 100 women with breast cancer
have this type of tumor (cancer).
Trastuzumab (Herceptin®) is the biological
therapy available to women with early-stage
breast cancer that is HER2/neu-positive. Other
biological therapies are being tested in clinical
trials.
Herceptin can be combined with chemotherapy. It is given intravenously at the same
time as chemotherapy, and for about a year
afterward.
Possible Benefits of Herceptin
Herceptin has been shown to reduce the risk
of recurrence by about 50%.
Possible Side Effects of Herceptin
In clinical studies, about 25 out of 100 women
who were given Herceptin, with or without
chemotherapy, experienced the following side
effects:
• Flu-like symptoms, such as fever,
chills, muscle aches, and nausea
• Allergic rash
• Diarrhea
• Increased cough
These side effects were usually treatable and
not as bothersome after the initial treatment
of Herceptin.
Rare but Serious Side Effects of Herceptin
Rare but serious lung and heart problems, such
as pneumonia and heart failure, can also occur
with Herceptin and chemotherapy. Women
who have had certain types of chemotherapy
Biological Therapy 25
are at greater risk of developing these serious
side effects. Women age 50 or older and
women with pre-existing heart problems are
also at greater risk of developing these side
effects with Herceptin and chemotherapy.
In large studies, 1 out of 100 women develops
heart problems when taking a certain type of
chemotherapy. With the addition of Herceptin,
about 3 more women out of 100 would have
heart problems.
Women who are taking Herceptin are usually
watched closely by their doctors. Any heart
problems that develop usually get better once
a woman stops taking the medication.
26 Health Dialog
Combining Hormone Therapy and Chemotherapy
Some women who have hormone-receptorpositive tumors consider taking both hormone
therapy and chemotherapy. Taking both treatments can increase the chance of being cancer
free, but also causes more side effects.
Number of Women Who Are Cancer Free at 10 Years
For women with an average chance of cancer coming back
The decision about taking both depends on:
• Whether the cancer is hormonereceptor-positive
• Whether the cancer is HER2/neupositive and, if so, how a woman
feels about taking Herceptin at the
same time as chemotherapy
• How a woman feels about the
additional benefit
With hormone therapy, about 88 out of 100 women
would be cancer free. With both hormone therapy and
chemotherapy, about 3 more women would be cancer free.
• What types of side effects she is
prepared to accept
I chose to make the chemo and
tamoxifen options that would help
me fight the battle.
—Patricia B.
Combining Hormone Therapy and Chemotherapy 27
No Additional Treatment
Information in this chapter includes:
• Talking to Others Can Help You with
This Decision
• Tests to Help with This Decision
Some women choose to not have either
hormone therapy or chemotherapy. They
may worry more about their chance of having
side effects than about their chance of having
cancer come back. Some women think that
the benefit they might get from additional
treatment isn’t enough to make it worthwhile
for them.
The choice of no additional treatment
makes perfect sense if the risk is truly
small.
—William Wood, MD
Some older women may decide not to have
any additional treatment because they feel
they won’t live long enough for the treatment
to make a difference. If it does come back,
breast cancer can sometimes take years to
return. A woman who is older or has another
illness that is likely to shorten her life may
28 Health Dialog
feel that breast cancer treatment that could
cause discomfort or complications now doesn’t
make sense for her.
Talking to Others Can Help You with
This Decision
Whatever your reasons, if you think you’d
rather not have additional treatment, tell your
doctor. If you need help thinking through this
decision, you might want to talk to others
who can help you sort things out.
Feeling comfortable with a decision to have
no additional treatment may not be easy.
Most women are advised to have additional
treatment, or at the very least, they are told
they might benefit from it. Still, as the charts
in this booklet show, when the chance of
cancer coming back is low, the number
of women helped is quite small.
The chemotherapy had enough
negative side effects, and particularly
long-term and permanent ones, that it
didn’t seem worth that risk.
—Jane P.
Tests to Help with This Decision
Oncotype Dx is a gene assay, which is a test
of genes within a tumor. This test can estimate
a 10-year risk of recurrence. It is being used
to help doctors and patients make decisions
about risks and benefits of additional
treatments, such as chemotherapy.
Oncotype Dx is currently only approved
for women with Stage 1 or 2, node-negative,
estrogen-receptor-positive breast cancer when
used within 6 months of diagnosis.
Ask your doctor whether this test may help
with your decision about chemotherapy.
I know that cancer could come back
in five years whether or not you have
chemotherapy, so felt comfortable
with my decision.
—Mary B.
No Additional Treatment 29
Comparing Treatments
The chance of having cancer come back and
the impact of treatment can vary depending
on the specifics of your case.
Number of Women at Average Risk
Who Are Cancer Free at 10 Years
The charts on this page and the next page
show how the treatments compare for
women in three different situations:
• Women at average risk
• Women at higher-than-average risk
• Women at lower-than-average risk
The bars show how many women out of 100
would be cancer free and how many would
have cancer come back within 10 years,
depending on which treatments they choose.
As you see, most women do not have
cancer come back, even with no additional
treatment. Having both treatments provides
the lowest chance of having cancer come
back, but also has the most side effects.
Your doctor should be able to help you get
a better estimate of what you can expect,
based on the specifics of your situation.
*Hormone therapy is only an option for women with
hormone-receptor-positive cancer.
Number of Women at Higher-Than-Average Risk
Who Are Cancer Free at 10 Years
*Hormone therapy is only an option for women with
hormone-receptor-positive cancer.
30 Health Dialog
Number of Women at Lower-Than-Average Risk
Who Are Cancer Free at 10 Years
For me, I was more willing to live
with the risk of having the cancer
come back than to live with difficult
side effects, long-term side effects,
from the chemo and sit there going,
“And maybe I didn’t need it at all.”
—Betsy C.
*Hormone therapy is only an option for women with
hormone-receptor-positive cancer.
Additional treatment can also improve
survival, but it has a smaller impact on the
chance of death from breast cancer than it
has on the chance of cancer coming back.
In part, that’s because not all recurrences
are life threatening, and also because many
women with breast cancer die of other causes,
such as heart disease, that aren’t necessarily
related to their cancer.
Comparing Treatments 31
Working with Your Care Team
Information in this chapter includes:
• Shared Decision-Making
• Your Care Team
Shared Decision-Making
In some medical situations there is a clear,
right answer, and your doctor can tell
you exactly what’s best to do. In other
situations—for example, with breast
cancer—there are different choices that
are reasonable.
What’s “best” depends on how you feel about
the good and bad things that might happen
with each choice. With breast cancer, you
have time to work with your doctor to find
the treatment that is best for your health and
that makes sense with the way you live.
Working with your healthcare providers to
make decisions about your care that take your
preferences into consideration is called shared
decision-making.
32 Health Dialog
There are many reasons for getting involved in
your healthcare. Shared decision-making can
help you:
• Get more out of conversations
with your doctors
• Feel more satisfied with your
healthcare
• Get the type of medical care
you want
• Avoid treatments or side effects
you don’t want
• Gain a feeling of control over
your life
Shared Goal
Shared decision-making starts with a shared
goal: keeping you healthy with care that’s right
for your needs. To get the right care, you and
your doctor need to talk about your personal
health goals and what you’re able to do to
protect or improve your health. Getting good
care requires good communication between
you and your doctor.
Shared Effort
Shared decision-making also includes shared
effort. Part of your doctor’s job is to explain
your condition and treatment choices and
listen carefully to your concerns. Your job
is to prepare your questions, make sure you
understand the answers, and help your doctor
understand what is important to you.
Shared effort means that you:
• Educate yourself about the medical
condition(s) you have, as well as any
health problems you may be at risk
for in the future
If you have trouble following through, be sure
to let your doctor know so that you and your
doctor can figure out an approach that works
for you.
Your Care Team
There are many medical specialists involved in
treating breast cancer. The professionals who
work with you will vary depending on your
condition and where you receive treatment.
The table on the next page lists professionals
who may be part of your care team.
• Talk clearly and openly with your
doctor about your health and habits
• Ask questions until you understand
the answers
• Use your time with your doctor
wisely
• Work with your doctor to make
your healthcare decisions
• Follow through on the care plan
you choose together
Working with Your Care Team 33
Breast Cancer Healthcare Professionals
Medical Oncologist
A doctor who specializes in diagnosing cancer and treating it with drugs such as chemotherapy,
hormone therapy, and biological therapy.
Medical Social Worker
A professional trained to talk with people who have cancer and their families about emotional
and physical needs and to find them support services.
Nurse Breast Specialist
A registered nurse or nurse practitioner with special training in breast health who provides
information and support to women facing decisions about treating breast cancer.
Oncology Nurse
A registered nurse or certified nurse practitioner with special training in the care of cancer patients.
Pathologist
A doctor who is trained to identify cancer by examining tissue samples and fluids using a microscope
and laboratory tests. Pathologists’ findings help diagnose cancer, estimate how the cancer may behave
in the future, and predict how the cancer may respond to different treatments.
Plastic Surgeon
A doctor who does breast reconstruction surgery to re-create the breast after mastectomy.
Also called reconstructive surgeon.
Radiation Oncologist
A doctor who specializes in treating cancer with radiation therapy.
Radiologist
A doctor who examines x-rays, mammograms, ultrasounds, and other imaging tests to look for cancer
and other conditions.
Surgeon
A doctor who does surgery to remove cancer tumors and lymph nodes; may be a general surgeon or
specialized breast surgeon.
Surgical Oncologist
34 Health Dialog
A doctor who specializes in surgery to remove cancer, including lymph node surgery.
Making Your Decision
Information in this chapter includes:
• Making the Best Decision for You
• Working with Your Doctor
Your preferences are central to your decision
about whether to have additional treatment.
Some women are more willing to live with
the possibility that cancer may come back
than to live with the possibility of side effects
or long-term harms of additional treatment.
Making the Best Decision for You
Once you have the information you need,
think about the possible benefits and side
effects of additional treatment. Thinking about
your answers to the following questions may
also help you sort out what’s most important
to you:
• How worried are you about your
breast cancer coming back?
• How important is the amount
of benefit you might get from
treatment?
Other women want to do everything possible
to lower their risk of cancer coming back and
are less concerned about possible side effects.
• How worried are you about the
serious complications?
It’s important to realize that no decision can
guarantee the results you want. But many
women say that being actively involved in
their medical decisions helps them feel better,
regardless of what happens in the future.
• Are the benefits worth the side
effects and risks?
• How bothersome would side
effects be?
In doing the research and being a
partner in your treatment decisions
and your treatment itself, you do feel
more in control.
—Alice L.
Making Your Decision 35
Working with Your Doctor
Making a decision with your doctor may seem
easier said than done—but the idea is to work
together, not to make your decision all alone.
Your doctor can help you understand the
medical facts about your situation, such as:
• What is the chance of cancer coming
back?
• How much might treatment reduce
that chance?
• What types of side effects are you
likely to have? What are the unlikely,
but serious, side effects?
• Can these side effects be treated?
Some women find it easier to decide after
getting a second opinion. But it is also
reasonable to make your decision with one
doctor. There’s no right way or right number
of opinions you need to make a good decision.
36 Health Dialog
Once you have the information you need,
think about the possible benefits and side
effects of additional treatment—and which are
most important to you. Talk with your doctor
about your feelings so that together you can
make the decision that’s right for you.
Definitions of Medical Terms
(Adapted from the National Cancer Institute’s Dictionary of Cancer Terms, www.cancer.gov/dictionary)
adjuvant therapy: Treatment given in addition to surgery to increase the chances of a
cure. Adjuvant therapy may include hormone therapy, chemotherapy,
and biological therapy.
biological therapy: Treatment that targets cancer cells that make too much of a protein
called HER2/neu. Trastuzumab (Herceptin®) is the biological therapy
available to women with early-stage breast cancer that is HER2/neupositive. Other biological therapies are being tested in clinical trials.
biopsy: The removal of cells or tissues for examination under a microscope.
chemotherapy: Treatment that involves taking medications that target cancer cells.
Some are taken by mouth and others are injected by needle directly
into the bloodstream over the course of a few hours. The medications
enter the bloodstream and can kill cancer cells throughout the body.
Chemotherapy often causes side effects.
clinical trial: A type of research study that tests how well new medical treatments or
other interventions work in people. Such studies test new methods of
screening, prevention, diagnosis, or treatment of a disease. The study
may be carried out in a clinic or other medical facility. Clinical trials
are helping doctors find out more about long-standing hormone therapy and chemotherapy treatments—for example, which medications,
doses, and treatment schedules are best. Also called “clinical study.”
hormone receptor: A protein on the surface of a cell that binds to a specific hormone.
Some breast cancer cells have estrogen and/or progesterone receptors.
These cancer cells are often responsive to treatment with hormone
therapies such as tamoxifen.
Definitions of Medical Terms 37
hormone therapy: Treatment that blocks or removes hormones. To slow or stop the
growth of breast cancer, hormone therapies may be given to block the
body’s natural hormones. May also be called “endocrine therapy.”
local treatment: Treatments such as surgery and radiation that treat cancer in the breast
and breast area only, including the lymph nodes under the arm. Local
treatments do not treat cancer cells that may have spread to other parts
of the body. Also called “local therapy.”
lymph nodes: Small clusters of tissues that act as “security checkpoints” to help
defend the body from the spread of infections and cancer.
metastatic cancer: Cancer that has spread from one part of the body to another. Tumors
formed from cells that have spread are called “secondary tumors” and
contain cells that are like those in the original tumor.
ovarian ablation: Permanently stopping the production of estrogen in the body by either
surgery to remove the ovaries or radiation to the ovaries. Menopause
occurs immediately and is permanent. This procedure also causes
permanent infertility.
ovarian suppression: Reducing the amount of estrogen made by the ovaries by taking
medication. Premenopausal women who take this medicine will
enter menopause. For some women, medically induced menopause
is permanent, even if they stop taking the medicine. Other women
who stop taking the medicine will start having periods again and may
be able to have children.
radiation therapy: The use of high-energy x-rays to kill cancer cells. Radiation is a local
therapy used to kill cancer cells that may remain in the breast area
after surgery.
38 Health Dialog
recurrence: The return of cancer, at the same site as the original tumor or in
another location. The type of recurrence is different depending on
where the cancer is found, including local (treated breast or breast
area), contralateral (other breast), and distant (other parts of the
body).
systemic treatment: Treatment with medications that travel through the bloodstream,
reaching and affecting cells all over the body. Hormone therapy,
chemotherapy, and biological therapy are systemic treatments for
breast cancer. Also called “systemic therapy.”
Definitions of Medical Terms 39
For More Information
Adjuvant!
www.adjuvantonline.com
A woman and her doctor can use this Web
site to help estimate her risk of breast cancer
recurrence or death, how hormone therapy
or chemotherapy might change her risk, and
the side effects of treatment. Please work with
your doctor to be sure that information from
your pathology report is entered accurately—
in some cases it can be difficult to interpret.
American Cancer Society (ACS)
Toll-free: (800) ACS-2345 [(800) 227-2345]
TTY: (866) 228-4327
www.cancer.org
The American Cancer Society is a nationwide
community-based voluntary health organization. The mission of ACS is to eliminate
cancer as a major health problem by
preventing cancer, saving lives, and
diminishing suffering from cancer through
research, education, advocacy, and service.
For the local ACS office nearest you, visit
the Web site or call the toll-free number.
40 Health Dialog
Breast Cancer Network of Strength
135 S. LaSalle Street
Suite 2000
Chicago, IL 60603
Phone: (312) 986-8338
www.networkofstrength.org
Formerly known as “Y-ME,” this organization
works to decrease the impact of breast cancer,
create and increase breast cancer awareness,
and ensure—through information, empowerment, and peer support—that no one faces
breast cancer alone.
BreastCancerTrials.org
2186 Geary Boulevard
Suite 103
San Francisco, CA 94115
Phone: (415) 476-5777
www.breastcancertrials.org
This Web site helps women with breast cancer
find clinical trials of treatments that might be
appropriate for them. Women answer a series
of questions, and the Web site uses that
information to match women to trials that
are specific to their personal health situation
and geographic location.
Cancer.Net
American Society of Clinical Oncology
Attn: Communications and Patient
Information Department
2318 Mill Road
Suite 800
Alexandria, VA 22314
Toll-free: (888) 651-3038
Phone: (571) 483-1780
www.cancer.net
Cancer.Net, the patient information Web site
of the American Society of Clinical Oncology,
provides oncologist-approved information
on more than 50 types of cancer and their
treatments.
National Cancer Institute (NCI)
NCI Public Inquiries Office
6116 Executive Boulevard
Room 3036A
Bethesda, MD 20892-8322
Toll-free: (800) 4-CANCER [(800) 422-6237]
www.cancer.gov
the latest information about cancer treatment,
screening, genetics, supportive care, and
clinical trials.
Susan G. Komen for the Cure®
5005 LBJ Freeway
Suite 250
Dallas, TX 75244
Toll-free: (877) GO KOMEN [(877) 465-6636]
ww5.komen.org
The Komen Foundation aims to eradicate
breast cancer as a life-threatening disease by
advancing research, education, screening,
and treatment. The Helpline is committed to
providing timely and accurate information
to anyone with breast health and breast cancer
concerns, including breast cancer patients and
their families and friends.
The National Cancer Institute is the
government’s principal agency for cancer
research. This site has a database containing
For More Information 41
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This booklet was written using the most up-to-date
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any of these articles, your doctor or librarian may
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42 Health Dialog
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44 Health Dialog
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Research Publications Used to Write This Booklet 45
Notes
46 Health Dialog