Making Decisions About Your Care
Patients used to answer questions, but not ask them. They accepted care and assumed the doctor knew best. And many doctors have been trained to treat diseases and health conditions instead of the whole person. These customs are slowly changing. But there are still many wrong ideas about what patients need and who should decide.
Some doctors make treatment recommendations based on what they think a patient wants without asking the patient. For example, some doctors may think that a 60-year-old woman will care less about losing her breast than a 40-year-old. But these are very personal decisions that often have nothing to do with age. Your doctor should always ask what is important to you. Even if your doctor doesn't ask, you should tell her or him.
Your breast cancer care should not be based on what other patients want. Nor should it be based on what your doctor wants for you. It should be based on what matters to you. The key is to be informed. And then be responsible for your choices.
What You Can Do:
Be involved in your care. Or ask a friend or family member to do that for you.
Some patients want their doctors to make all the decisions. It is very tempting to hope your doctor is perfect and do as you are told. But NBCCF believes that is risky.
In breast cancer care, what you don't know can hurt you. Your choices can affect your chances of surviving, other parts of your health, and your quality of life. Asking a question doesn't mean you don't respect your doctor's or nurse's opinion. It means that you respect them--and yourself--enough to get all the information you need. For some good tips on how to talk with doctors and nurses, contact the National Coalition for Cancer Survivorship. They can send you their cancer Survival Toolbox audiotapes. The tapes include sections on talking with doctors, making deals, solving problems, and standing up for your rights.
Most doctors and nurses want to hear your questions. Your questions help them know what you want and how they can help you be informed. Ask a friend or family member to ask the questions if you don't want to. Ask if your hospital has a patient navigator or oncology social worker who could help advocate for the care you deserve. Click here to learn more about patient navigators.
Learn about your treatment choices.
Most breast cancer patients have more than one choice to make about their treatment. And often, one choice leads to another choice. For example, some women who choose to have a mastectomy also choose to have reconstructive surgery. But that choice leads to another choice--what kind of reconstructive surgery? There are different kinds of reconstructive surgery.
It takes time to really learn about your choices and to think about your own values and preferences. It takes time to make informed decisions.
We can't tell you what all your choices will be, but we can tell you about the most common choices that breast cancer patients face.
There are many sources of information about breast cancer treatment options. One of the best sources is Dr. Susan Love's Breast Book. Her book talks about breast cancer treatment options in depth. Some of the information from her book is also available on her web site.
NBCCF has a Drug Fact Sheet that gives basic information on the most commonly used breast cancer drugs. This may help you as you learn about your treatment choices.
If you or your doctor thinks you might have breast cancer, you may need to have a biopsy performed. A biopsy is done to remove, examine, and diagnose a sample of suspicious breast tissue. This is different from a lumpectomy. A lumpectomy is a more extensive surgical procedure done as a treatment for breast cancer to completely remove a cancerous tumor.
There are different types of biopsies. Some use a small needle to remove just a little bit of tissue. Others involve cutting the breast to remove a larger sample of tissue.
Be sure to ask your doctor what kind of biopsy procedure she or he recommends and why. Ask if it is the least invasive biopsy possible. If not, why not?
Local treatments try to remove or destroy all the cancer cells in the breast. There are two main types of local treatment: surgery and radiation therapy.
Surgery -- If you have been diagnosed with breast cancer, you will probably need some kind of surgery to remove the cancer from your breast. Some individuals can undergo lumpectomy. Some individuals may need a mastectomy. While other patients may have a choice between the two.
A lumpectomy removes the cancer tumor, but leaves the rest of your healthy breast tissue. Most women who have a lumpectomy also need to have radiation therapy. A mastectomy removes the whole breast.
A lot of breast cancer patients can choose between a lumpectomy with radiation and a mastectomy. In these cases, women who have a lumpectomy with radiation therapy have the same chances of survival as women who have mastectomy. But there are important pros and cons to each treatment.
The most obvious benefit of a lumpectomy is that it doesn't take away a woman's entire breast. But most patients who choose a lumpectomy must have radiation therapy. Each radiation treatment itself is quite short. But patients usually need to get radiation treatments five days per week for six to eight weeks.
This can be hard for some patients. They may have trouble getting to and from their care center. Or it may be hard for them to take that amount of time away from their work or their families. Some patients want to finish their treatment as quickly as possible and "get on with their lives." For them, a mastectomy may be the right choice.
The choice between a lumpectomy and a mastectomy is a very personal choice. If your doctor recommends one instead of the other, be sure to ask why.
During the breast surgery, most breast cancer patients have some of the lymph nodes under their arm removed. Doctors want to know whether the cancer has spread to your lymph nodes. They use this information to recommend further treatment for you. There are several choices for lymph node removal. One method of lymph node evaluation is axillary dissection, a surgical procedure usually involving the removal of 10-30 lymph nodes. Another method used to evaluate lymph node status is a sentinel lymph node procedure. Sentinel lymph node procedures are less invasive, and usually involve the removal of only 1-3 lymph nodes.
Radiation Therapy -- Radiation therapy is given to breast cancer patients to help kill any cancer cells that might be left in the breast after surgery. Radiation therapy is an important part of treatment for most breast cancer patients who choose a lumpectomy. But some patients with breast cancer that is at a very early stage may not need radiation therapy. Also, there is evidence that shows some breast cancer patients will benefit from radiation after mastectomy.17
The standard way of giving patients radiation therapy is by aiming a beam of radiation from outside the body (externally) to the whole breast. Some cancer centers are trying a new way of giving patients radiation, called partial breast irradiation. Partial breast irradiation involves a much shorter period of radiation therapy with the radiation targeted only to the specific part of your breast that has cancer. However, this method is not part of routine care. Partial breast irradiation is still experimental, and should only be done as part of a clinical trial. Brachytherapy is another type of partial breast irradiation that is experimental. The radiation is given internally by placing radioactive pellets directly in the breast tissue for about a week.
Systemic treatments treat the cancer that may be elsewhere in your body. Cancer cells may have left your breast through the blood or lymphatic systems, and there may be small areas of breast cancer growing in other tissues. Systemic treatments kill these cancer cells so that they do not begin growing in a vital organ. We have the best chance of killing such cancer cells when there are only small amounts that cannot be seen yet on scans. There are two main types of systemic treatments: chemotherapy and hormonal therapy.
Chemotherapy -- Chemotherapy drugs kill fast-growing cells such as cancer cells. But because chemotherapy kills fast-growing cells, it also affects your hair cells and the cells in the lining of your stomach. This is why side effects of chemotherapy can include hair loss and a badly upset stomach. Some chemotherapy drugs may have more serious side effects such as cardiac toxicity (hurting the heart). Despite its bad side effects, chemotherapy can help a lot of breast cancer patients.
Hormonal Therapy -- Estrogen and progesterone are normal hormones in every woman's body. Hormonal therapy blocks estrogen and progesterone from helping breast cancer cells grow and reproduce. This type of therapy has been shown to help breast cancer patients whose breast cancer is estrogen or progesterone receptor-positive. Tamoxifen is one type of hormonal therapy. Other hormonal treatments include aromatase inhibitors.
Scientists are studying many new types of treatments in clinical trials. They are trying to find treatments that will target cancer cells without harming many healthy cells. These treatments, sometimes called "targeted treatments," will hopefully be more effective and less toxic than current treatments. One type of targeted treatment that has been FDA-approved for women with metastatic breast cancer is the drug called Herceptin®. For women with HER2/neu-positive, metastatic breast cancer, Herceptin® is the standard of care. There is evidence that Herceptin® also helps women with HER2/neu-positive, early breast cancer, but it has not yet been approved by the FDA for use among these women and research is still being done.
Reconstructive surgery is an important part of breast cancer care for many women. It rebuilds the breast tissue that was removed during a mastectomy. If you are thinking of reconstructive surgery, ask your breast surgeon about a skin-sparing mastectomy which leaves a pocket of skin that the plastic surgeon can then use for the reconstruction.
Breast tissue can be rebuilt a number of ways. It can be rebuilt using an implant or by using a tissue flap from another part of your body such as your back, belly, or buttocks. Some women do not want reconstructive surgery. Instead, they choose to use a breast prosthesis placed in their bra under their clothes, or prefer nothing at all.
If you are thinking about reconstructive surgery, you need to learn about the options available. There are important differences between the two major types of breast reconstruction: implants and tissue flaps. Here are some important things to think about:
There are good results and bad results. It is very important to have your surgery done by a plastic surgeon who does a lot of the type of surgery you are going to have. For example, if you choose a tissue flap reconstruction, you want a plastic surgeon who has done this type of surgery many times. Ask your surgeon how many times she or he has done this surgery. And ask for before-and-after photos of some of her or his patients. That way you can see what to expect.
Ask yourself some hard questions.
Every breast cancer patient must ask herself some hard questions such as these:
For example, a woman with ER-positive breast cancer should think about the choice between getting hormonal therapy alone, or hormonal therapy with chemotherapy. For someone at a very high risk of metastatic disease, adding chemotherapy to hormonal therapy will have a much greater impact on her absolute risk because the risk is so high. For a woman at low risk for metastatic disease, the benefit of adding chemotherapy will be much less (perhaps only a percent or two) because there is not that much risk to decrease. (Click here to learn more about absolute risk and relative risk.) Each choice has different results and consequences, but either is okay. Each choice just depends on your preferences.
If your breast cancer has spread to other organs in your body (called "metastatic breast cancer"), it's even more important to ask the hard questions. That's because less is known about how to treat this type of breast cancer.
Different people will make different decisions about how much treatment they want, and for how long. Realize that treatment choices are in your hands.
It might help to talk with other patients. Many have faced the same choices. Contact NBCCF to see if there's a field coordinator or breast cancer group near you.
17. National Institutes of Health Consensus
Development Panel. National Institutes of Health Consensus Development statement: adjuvant
therapy for breast cancer, November 1-3, 2000. J Natl Cancer Inst Monogr 2001;
Quality Breast Cancer Care Means:
© 2001, 2002, 2006 National Breast Cancer Coalition Fund