Understanding Your Diagnosis
There are many different types of breast cancer. The doctor who determines what type of
breast cancer you have is called a "pathologist." The type of
cancer you have is called your "diagnosis." It is very important
that the pathologist gives you an accurate diagnosis. It is also important that you
understand your diagnosis. Your treatment will be different depending on your diagnosis.
Here's how doctors make a breast cancer diagnosis. A doctor takes a sample of your
breast tissue. (This is called a "biopsy.") Then, the pathologist
looks at the tissue sample. (The tissue samples that pathologists look at are also called
"breast tissue slides.")
The pathologist describes your cancer in a report. The report tells your "specific
disease characteristics." Your disease characteristics tell what type of breast
cancer you have. The disease characteristics help your doctors decide what treatment to
Learning about your diagnosis helps you make informed care choices. The challenging
part is that your diagnosis can be hard to understand. The good news is that all of your
doctors should have the important information about your disease, but it may have to be
gathered from a number of places. These may include:
- your pathology
report, also called a "biopsy report,"
- X rays, or other breast imaging tests such as mammogram, ultrasound, and MRI,
- bone scans,
- blood tests,
- surgical reports, and
- special tests on removed cancer tissue--for example, estrogen and progesterone receptor status, HER2/neu status, or gene expression profiles. (Click here to learn more about gene expression profiles.)
Read on for advice on how to understand your pathology report.
What You Can Do:
Learn exactly what your diagnosis is.
Ask if there is more than one name for it. For example, "breast cancer,"
ductal carcinoma," and "infiltrating ductal carcinoma" can all
mean the same thing.
Is this the first time you have ever had breast cancer? If so, here are some important
questions to ask your doctor:
- Is my breast cancer invasive or noninvasive?
- What stage is my breast cancer? (for example: Stage 0, Stage I, Stage IIA, Stage IIB,
- What is the size of my tumor? (for example: 1 cm, 2 cm, etc.)
- What is the grade
of my tumor? (for example: Grade 1, Grade 2, Grade 3, etc.)
- Are the margins
of my tumor clear?
- If your lymph nodes
were tested, ask whether the cancer had spread to them. If so, to how many lymph nodes?
- If your lymph nodes have not been removed, ask about a sentinel lymph node
procedure to test only those nodes closest to the breast.
- Is my breast cancer estrogen receptor-negative
- Is my breast cancer progesterone receptor-negative or progesterone
- Is my breast cancer HER2/neu-negative or HER2/neu-positive?
The answers to these questions will help you understand some of your disease
characteristics. Be sure to ask what each disease characteristic means for you. You need
this information to make informed treatment choices.
Have you been diagnosed with breast cancer a second time? If so, you may want to ask
your doctor these questions:
- Is this new tumor a new primary tumor? Or is it a local recurrence? Or does
it mean that I have metastatic breast cancer?
- Is this tumor different in any way from my previous tumor? If so, how will the
differences affect my treatment?
- What were the results of my bone scan, liver function tests, chest X ray, and any other
- What are my treatment options?
- How will I know if the treatment is working?
Once again, the answers to these questions will help you figure out your treatment
choices. The more information you have about your specific diagnosis, the more informed
your treatment choice will be.
Why are these questions important?
They are important because doctors decide which treatments to recommend based on your
diagnosis. Each woman with breast cancer has a different set of disease characteristics.
These characteristics help doctors predict which women will most likely benefit from each
treatment. And there are some drugs that only help women with one specific characteristic.
Several different disease characteristics will be listed on your pathology report. The
following four characteristics are the ones used most often by doctors to recommend
You can learn more about these and other disease characteristics by reading Dr. Susan Love's
Breast Book or visiting her web site. The Y-ME Breast Cancer Organization also has a
helpful brochure. It's called, "Understanding Your Breast Cancer Pathology Report: A
Guide for Breast Cancer Patients." Call Y-ME to request a copy. Or you can print a
copy from the group's web site.
- Lymph Node Status--Lymph nodes are small oval glands that help your body fight
infection. They also help filter the fluid that circulates throughout the body, trapping
bacteria, cancer cells, and other harmful substances. If a woman's breast cancer has
spread to any of the lymph nodes near her breast or under her arm, her breast cancer is
If a woman's breast cancer has not spread to the lymph nodes, her breast cancer is
Women with node-negative breast cancer have a better chance of survival than women with
node-positive breast cancer. So doctors often offer more aggressive treatments to women
with node-positive breast cancer. For example, some doctors recommend stronger types of chemotherapy
drugs to women with node-positive breast cancer than to women with node-negative breast
Sometimes treatment recommendations are based on the number of lymph nodes that have been
invaded by the cancer. For example, doctors will more likely recommend radiation therapy after mastectomy
for women with a greater number of positive lymph nodes.
- Tumor Size--In general, women with smaller breast cancer tumors have a better
chance of survival than women with larger breast cancer tumors. So doctors often offer
more aggressive treatments to women with larger tumors. For example, doctors may recommend
that women with breast cancer tumors larger than 5 centimeters who undergo mastectomy also
have radiation therapy to the chest wall area.
- Estrogen and Progesterone Receptor Status--Estrogen and progesterone are normal
hormones in every woman's body. Breast cells have some receptors for estrogen and some
receptors for progesterone. Receptors are molecules in cells that bind other molecules.
When estrogen and progesterone come in contact with these receptors, the breast cells grow
In some breast cancers, the cancer cells have many more estrogen and progesterone
receptors than normal and are dependent on estrogen and/or progesterone to grow. These
breast cancers are called estrogen receptor-positive and progesterone receptor-positive.
Breast cancers with low levels of estrogen and/or progesterone receptors, or no receptors
at all, are called estrogen receptor-negative and progesterone receptor-negative.
Tamoxifen is a
drug that acts like estrogen and can bind to the estrogen receptors in breast cells. It is
an effective treatment for women with estrogen receptor-positive breast cancer because it
blocks the effect of estrogen and prevents cancer cells from growing and reproducing.
However, tamoxifen has little effect on estrogen receptor-negative breast cancer.
A few breast cancers are estrogen receptor-negative and progesterone receptor-positive.
Tamoxifen may help women with this type of breast cancer for reasons we do not completely
inhibitors are a recently developed category of drugs used to treat hormone-dependent
(estrogen receptor-positive and/or progesterone receptor-positive) breast cancer.
Aromatase inhibitors work by blocking the production of estrogen in the body. Examples of
Aromatase inhibitors include anastrozole, exemestane, and letrozole. These drugs have been
shown to be effective treatment either alone, or after tamoxifen, among postmenopausal
- HER2/neu status--HER2/neu is another type of receptor that affects the growth of
breast cancer cells. In some breast cancers, the cancer cells have many more HER2/neu
receptors than normal. These breast cancers are called HER2/neu-positive. Breast cancers
with low amounts of the receptor, or none at all, are called HER2/neu-negative.
It is important to remember that there is a range of possible levels of HER2/neu
expression. Determining each woman's HER2/neu status is not a black-and-white issue. For
example, it is sometimes unclear whether women with low levels of the receptor should be
considered HER2/neu-positive or HER2/neu-negative.
There are two types of FDA-approved laboratory tests that measure HER2/neu status--the IHC test and the FISH test. There is
evidence that the FISH test is better at showing which women will benefit from Herceptin® and
which will not. However, neither test is perfect and both have advantages and
disadvantages.12 If your doctor recommends Herceptin®
therapy, you should make sure that your breast tissue has also been tested using the FISH
test and that the FISH test indicates your breast cancer is HER2/neu-positive.
is a drug that can block HER2/neu. It is an effective treatment in many women with
metastatic, HER2/neu-positive breast cancer. But the drug has little effect on women with
HER2/neu-negative breast cancer.
So far, Herceptin® is only FDA-approved for use in women with HER2/neu-positive,
metastatic breast cancer. There is, however, mounting evidence that Herceptin® may also
be effective in treating women with HER2/neu-positive, early breast cancer.13 These findings have prompted the makers of Herceptin® to
seek FDA approval in extending its use to these patients. However, the data given to the
FDA for evaluation comes from two clinical trials that were stopped
before being completed due to better-than-expected results among the women given
Remember--Sometimes the more specific your diagnosis is, the more specific your
treatment can be. It is important to use drugs that have been shown to help your type of
breast cancer. And it is important not to use drugs that have not been shown to help your
type of breast cancer, unless you are taking part in a clinical trial about the drug.
That's because all cancer drugs have side effects, so you may be hurting your body more
than helping it. It's important to learn about the risks and benefits of each treatment
before making any decision about your care.
Ask for a copy of your pathology report.
Your pathology report has important information about your cancer. Ask your doctor if a
breast pathologist wrote your pathology report. If not, you might want to ask if a
breast pathologist is available to look at your breast tissue or if your breast tissue
slides can be reviewed at a hospital where there is a breast pathologist.
Your pathology report helps your oncologist and others understand
what type of cancer you have. It also helps them predict what the cancer tumor will do.
And it helps your doctors and you understand what treatments may help you. Ask your doctor
to explain your specific disease characteristics to you.
The Y-ME Breast Cancer
Organization has a good brochure called "Understanding Your Breast Cancer
Pathology Report: A Guide for Breast Cancer Patients." Visit the group's web site to
print a copy. Or call and ask for a copy to be mailed to you.
Love's Breast Book has a helpful section called "How to Interpret a Biopsy
Report." She also has this information on her web site.
Get a second opinion about your diagnosis and pathology.
There are two kinds of second opinions that can help
you. You should get both kinds of second opinions.
- You should have a second pathologist determine your specific diagnosis. This is called a
"pathology second opinion."
- You should visit more than one doctor to talk about your treatment choices. This is
called a "treatment second opinion."
Get a pathology second opinion before getting a treatment second opinion. A
pathology second opinion can help you be sure that your diagnosis and disease
characteristics are correct. This is very important, because doctors base their treatment
advice on your pathology report. If your pathology report is wrong, you might get the
wrong care. Every so often, it's difficult for pathologists to give a clear-cut diagnosis.
So you may get conflicting pathology reports. In this case, it's especially important to
learn as much as you can about your specific diagnosis.
To get a pathology second opinion you must have your breast tissue slides sent to a
second breast pathologist. You can arrange to have this done on your own. You do not need
your doctor's OK to have a pathology second opinion. But you may have to pay for it
yourself. This is what you need to do:
- Find a breast pathologist at a different hospital or cancer center to give the second
opinion. One way is to call the pathology department at another hospital. The hospital
doesn't have to be near you. You can call hospitals anywhere in the country. Ask them if
they have a breast pathologist who could review your breast tissue slides. You may want to
contact the group, FindCancerExperts.com. They
help patients all over the country get pathology second opinions.
- Have you found a breast pathologist to review your slides? If so, call the pathology
department at the hospital where your biopsy was done. Ask them to send your breast tissue
slides to the breast pathologist who will give the second opinion.
Ask your doctors if they will keep your breast tissue.
Right now, researchers are looking for specific ways to identify different subtypes of
breast cancer. They are also trying to find more targeted ways to treat specific types of
breast cancer. This is a promising area of research. It holds the future of breast cancer
Your breast tumor gives important information about your disease. This information may
be important to your future care. It might help you later as new treatments and drugs come
out. Your tissue also contains information that can help breast cancer researchers. This
is why we think it is important that you ask that your breast tissue be stored properly
and that you have access to it in the future. Ask your doctors these questions:
- How will my breast tissue be preserved?
- Can it be flash-frozen and stored?
- How can I access my tissue in the future?
analyses of the two articles on Herceptin use among women with early breast cancer by
Romond, et al., and Joensuu, et al. See also a fact sheet on the early-stopping of