Our Bodies, Ourselves (128 page)

All genetic testing should be accompanied by written, informed consent; complete information about benefits and risks; and professional counseling about options. This is best done through one of the many cancer risk assessment programs located throughout the country. A comprehensive list of programs can be found on
the websites of the National Society of Genetic Counselors (nsgc.org) and American Board of Genetic Counseling (abgc.net).

If you have BRCA gene mutations, several possible strategies can reduce your risk of breast and ovarian cancer. These include taking drugs such as tamoxifen or raloxifene; prophylactic—that is, preventive—mastectomy; and having the fallopian tubes and ovaries removed. Because the science behind these strategies is changing so rapidly, and because these are major decisions with important risks to consider, it's best to consult experts, pursue the latest information about these options, and consider their possible effects on your life.

When you find out you have cancer, it's normal to feel shock, disbelief, fear, and anger. This psychological trauma comes exactly when you need to focus all your energy on learning about your treatment options. The most important thing to remember is that a diagnosis of breast cancer is usually not a medical emergency. This means that you have time to seek out opinions about the best way to proceed and to choose physicians with whom you feel comfortable. You have the right to have all of your questions answered and to understand your treatment options fully before deciding what to do.

Doing whatever your doctor suggests may be appealing at a time when you need to be taken care of, but it does not always result in the best care. Although most doctors have good intentions, they tend to offer only the treatment they know best. It's wise to get a second opinion before committing yourself to a plan, even if you feel confident with your first doctor. This is especially true if your physician has not fully explained your surgical treatment options.

Lumpectomy and radiation therapy (also called breast-conserving therapy) when compared with mastectomy (removal of the entire breast) has the same survival rates; that is, the same percentage of women who don't die of breast cancer. If your surgeon is not explaining this to you, then you should definitely seek a second opinion. While in some circumstances a mastectomy may be recommended and be better for keeping the cancer from spreading, you should fully understand why your doctor is recommending it. Some physicians may be slow to accept new therapies until there's more experience with them; some may be unwilling or unable to discuss all available treatments. Some states, including Massachusetts, California, and Minnesota, have laws that require patients to be informed of all medical options.

Even though you may have a good relationship with your health care provider, if you live in a small town you should strongly consider going to the nearest large city with a research-oriented or university hospital. These institutions generally keep up with ongoing studies, use a team approach, and may be more flexible about treatment. A local women's health center, the National Cancer Institute (cancer.gov), or the American College of Surgeons (facs.org) can help you find appropriate cancer centers and specialists. Cancer centers usually
have special breast cancer centers. The advantage of getting a second opinion or of being treated at a breast cancer center is that a team of specialists—medical, surgical, and radiation oncologists—will be involved with your care from the beginning. Private oncologists may not practice in teams, making coordination of your care more difficult. Certain breast cancer centers offer more treatment choices, including clinical trials testing new therapies.

If you meet income guidelines and were diagnosed under a federally funded screening program for uninsured or underinsured women, Medicaid will cover treatment for breast cancer. Some communities have local support groups for women with cancer, where you may be able to get help with transportation to medical appointments and with child care, as well as encouragement from other women who have had or are having similar experiences.

Surgery is usually recommended within six to eight weeks of the biopsy, so it's okay to take time to adjust, ask questions, and find out about your options. In some cases, chemotherapy is used over several weeks or months to reduce the size of the tumor prior to surgery (this is called neoadjuvant chemotherapy).

When you are trying to decide about treatment, the most pressing question is likely to be “How can I maximize my chances of disease-free survival?” But you will also want to understand the long-term effects of cancer therapy. To decide on the best treatment, you also need to know the size of the tumor, whether or not there is cancer in the lymph nodes, the hormone status of your tumor (called ER/PR), and what the HER-2/neu
*
status of your tumor is. These are specific for each woman's cancer, and these tumor markers can help individualize and optimize your therapy. Most of this information is available after the biopsy, and it is used to recommend systemic therapies (endocrine/hormone therapy or chemotherapy) and/or radiation. Usually the medical oncologist is the one who discusses appropriate treatment options based on the biopsy or surgery results.

It is important to learn about all the available options. The entire field of breast cancer medicine is changing rapidly. Old, established theories and treatments are being questioned, while newer techniques have not been used long enough to be completely evaluated. The 2010 edition of
Dr. Susan Love's Breast Book
and her website (dslrf.org) contain up-to-date and credible information on breast cancer treatment as well as important current research. The National Breast Cancer Coalition website (breastcancer deadline2020.org) takes an activist approach. Getting balanced information on the pros and cons of various treatment options will help with knowing what questions to ask and how best to proceed with your care.

Cancers are classified in stages. These stages provide some information about prognosis for an individual, as well as a mechanism for comparison of treatments and outcomes in different populations. Staging for breast cancer is based on three elements: tumor size or extent (T); which lymph nodes, if any, contain cancerous cells (N); and metastases—cancer detected by X-rays or scans in other parts of the body (M).

When cancer is first diagnosed, the clinical stage is identified by physical exam and some testing for metastatic spread. After surgery, lab analysis of the breast tissue and lymph nodes removed will determine the pathologic stage. The stage is important because doctors usually base their recommendations for treatment on how well other women with cancer at the same stage and similar history have responded to various treatments. The TNM stage is then grouped into five categories or overall stages.

Breast cancers are classified by whether they are noninvasive (or in situ) or invasive breast cancer. In situ tumors are made up of cells that when seen under a microscope look like but do not behave like cancer. They remain encapsulated within their usual environment—inside the duct or the lobule. There are no blood vessels or lymphatic vessels there, so these cells have no access to other parts of the body. In contrast, invasive (also known as infiltrating) breast cancer goes through the walls of the ducts and lobules, invading the surrounding fatty/fibrous portion of the breast tissue where blood vessels and lymphatic vessels lie.

LCIS is not cancer now—it's considered a risk factor for the development of breast cancer someday. Because LCIS is not preinvasive, there's no need to remove it unless it is found on a core biopsy. Because a core biopsy is a limited sample, the recommendation in this case is to have more tissue removed and examined to be sure there is no neighboring in situ or invasive cancer.

In studies of women with LCIS, 20 to 40 percent developed cancer (mostly invasive ductal carcinomas) over twenty years or more. Such cancers may occur anywhere within either breast, not only in the area where the biopsy was done.

DCIS is a noninvasive cancer. Many scientists believe DCIS will become invasive cancer if enough time passes. But it may never become an invasive cancer in your lifetime. More women
get this diagnosis now because improvements in technology have made it possible to find more and more DCIS with screening mammograms. Because DCIS can become an invasive cancer, treatment is usually recommended. There is unfortunately no way yet to tell which women really need treatment.

If you receive this diagnosis, get a second pathology opinion—preferably with a breast pathologist—before agreeing to any treatment. If possible get an opinion from a breast cancer center where you could meet with a multidisciplinary team of breast specialists.

Women diagnosed with DCIS have approximately a 1 percent risk of developing metastatic disease and 96 to 98 percent are alive ten years after diagnosis.
12
Treatment aims to remove the area of DCIS and reduce the chance of a local recurrence within the breast. For years the customary treatment for DCIS was mastectomy. Early studies comparing a more breast-conserving approach with lumpectomy combined with radiation therapy showed similar rates for local recurrence of disease and no difference in survival. Now women have a choice regarding treatment options. For breast-conserving therapy, a procedure similar to lumpectomy, called wide excision or partial mastectomy, is performed with the goal of clearing the margins of DCIS (meaning no DCIS is found at the edges of the tissue removed). For some women, even after several excisions, DCIS remains at the margins and mastectomy is recommended.

There is a lack of consensus in the medical community regarding whether radiation therapy is needed for all women diagnosed with DCIS. Studies have not yet provided strong evidence suggesting that adding radiation therapy is more or less effective than wide excision alone.

In invasive or infiltrating breast cancer, the breast cancer cells have moved outside the ducts or lobules into the surrounding tissue. Because the tumor cells can spread to other parts of the body, through either the blood or the lymph system, treatment usually requires both local surgical and possibly radiation therapy, along with systemic treatments, such as hormone-locking medicines and/or chemotherapy.

An unusual but very aggressive form of breast cancer is known as inflammatory breast cancer (IBC). The first symptom is usually redness of the skin, along with an orange peel appearance of the skin called
peau d'orange
(which is why it is called inflammatory). Usually an antibiotic is prescribed to see if the redness is caused by an infection. If it doesn't get better, a biopsy of the breast and the skin will diagnose the cancer. The usual treatment is chemotherapy first, followed by mastectomy and radiation.

As researchers discover more about the biology of breast cancer, treatment theories change. Breast cancer, in general, grows slowly. Most breast cancers have been growing for six to ten years before they are large enough to be seen on a mammogram or felt during an exam. During this time, cancer cells could be spreading (metastasizing), through blood vessels and the lymphatic system, to other places within the body. This doesn't always happen—not all breast cancer cells survive outside the breast. Also, the size of the cancer doesn't always correspond to how aggressive it is; the type of cells in it will affect what happens, too. However, there is no sure cure. A classic saying among breast cancer survivors is that you don't know you're cured until you die from something else. Women who have been successfully treated “so far” refer to being NED, or having No Evidence of Disease.

Current treatments for breast cancer are either local (therapy to the breast) or systemic (therapy to the whole body). Surgery and radiation are local therapies; chemotherapy,
endocrine/hormone therapy, and biologic/targeted therapy are systemic therapies because they reach other parts of the body beyond the breast.