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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 recommend.

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:

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," "invasive 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:

  1. Is my breast cancer invasive or noninvasive?
  2. What stage is my breast cancer? (for example: Stage 0, Stage I, Stage IIA, Stage IIB, etc.)
  3. What is the size of my tumor? (for example: 1 cm, 2 cm, etc.)
  4. What is the grade of my tumor? (for example: Grade 1, Grade 2, Grade 3, etc.)
  5. Are the margins of my tumor clear?
  6. If your lymph nodes were tested, ask whether the cancer had spread to them. If so, to how many lymph nodes?
  7. If your lymph nodes have not been removed, ask about a sentinel lymph node procedure to test only those nodes closest to the breast.
  8. Is my breast cancer estrogen receptor-negative or estrogen receptor-positive?
  9. Is my breast cancer progesterone receptor-negative or progesterone receptor-positive?
  10. 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.

Sidebar:
What are the stages of breast cancer and what do they mean?10
Sidebar:
Have you been diagnosed with DCIS or LCIS?

Have you been diagnosed with breast cancer a second time? If so, you may want to ask your doctor these questions:

  1. Is this new tumor a new primary tumor? Or is it a local recurrence? Or does it mean that I have metastatic breast cancer?
  2. Is this tumor different in any way from my previous tumor? If so, how will the differences affect my treatment?
  3. What were the results of my bone scan, liver function tests, chest X ray, and any other tests?
  4. What are my treatment options?
  5. 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 treatment.

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.

  1. 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 considered node-positive. If a woman's breast cancer has not spread to the lymph nodes, her breast cancer is considered node-negative.

    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 cancer.

    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.

  2. 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.

  3. 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 and reproduce.

    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 understand.

    Aromatase 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 women.11

  4. 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.

    Herceptin® (trastuzumab) 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 Herceptin®.14

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.

Sidebar:
What is the difference between "metastatic" and "end-stage" breast cancer?

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.

Dr. Susan 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.

  1. You should have a second pathologist determine your specific diagnosis. This is called a "pathology second opinion."
  2. 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:

  1. 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.
  2. 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 treatment.

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?
Sidebar:
The Future of Breast Cancer Research and Treatment

10. The information presented in this box is adapted from the National Cancer Institute's (NCI) Physician Data Query (PDQ) database.

11. The Breast International Group (BIG) 1-98 Collaborative Group. A comparison of letrozole and tamoxifen in postmenopausal women with early breast cancer. N Engl J Med 2005 Dec 29; 353(26): 2747-57.

ATAC Trialists' Group. Results of the ATAC (Arimidex, Tamoxifen, Alone or in Combination) trial after completion of 5 years' adjuvant treatment for breast cancer. Lancet 2005 Jan 1-7; 365(9453): 60-62.

12. Pauletti G, Dandekar S, Rong H, et al. Assessment of methods for tissue-based detection of the HER-2/neu alteration in human breast cancer: a direct comparison of fluorescence in situ hybridization and immunohistochemistry. J Clin Oncol 2000 Nov 1; 18(21): 3651-64.

Yaziji H, Goldstein LC, Barry TS, et al. HER-2 testing in breast cancer using parallel tissue-based methods. JAMA 2004 Apr 28; 291(16): 1972-7.

Chorn N. Accurate identification of HER2-positive patients is essential for superior outcomes with trastuzumab therapy. Oncol Nurs Forum 2006 Mar; 33(2): 265-272.

13. Piccart-Gebhart MJ, Procter M, Leyland-Jones B, et al. Trastuzumab after adjuvant chemotherapy in HER2-positive breast cancer. N Engl J Med 2005 Oct 20; 353(16): 1659-72.

Romond EH, Perez EA, Bryant J, et al. Trastuzumab plus adjuvant chemotherapy for operable HER2-positive breast cancer. N Engl J Med 2005 Oct 20; 353(16): 1673-84.

Joensuu H, Kellokumpu-Lehtinen PL, Bono P, et al. Adjuvant docetaxel or vinorelbine with or without trastuzumab for breast cancer. N Engl J Med 2006 Feb 23; 354(8): 809-20.

14. See NBCCF for 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 clinical trials.

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© 2001, 2002, 2006 National Breast Cancer Coalition Fund
Last reviewed: March 2006