Being Treated as a Whole Person
You may need different doctors and nurses to help with different parts of your breast cancer care. They can help you take care of yourself, avoid other problems complications, and keep up your quality of life. You may need pain control, physical therapy, mental health services, and care that treats other health problems. Our health care system must treat the whole person, not just a person's disease.
What You Can Do:
Ask for a comprehensive care plan.
"Comprehensive" means covering all the bases. Your doctors and nurses should be able to create a plan with you that may include things like:
Remember that breast cancer care plans are not simple. They often need to be changed along the way. Ask your doctors to give you a list of all the treatments you will get. Ask for a timeline that tells when and for about how long you will get the treatments. What if you can't get the timeline in writing? Be sure to take notes about all the major parts of your care (for example, surgery, chemotherapy, and radiation, etc.). Ask your doctors if you can tape-record your meetings with them. That will help you remember what was said.
Be sure your plan reflects your values.
Some breast cancer choices are pretty easy ones. For example, most breast cancer patients would choose a treatment if they knew it would greatly increase their chances of living a long, cancer-free life.
Other choices are harder. For example, women with early breast cancer are often offered chemotherapy drugs. Chemotherapy drugs may cause several bad side effects such as upset stomach, hair loss, heart problems, and early menopause in young women. Anthracyclines are chemotherapy drugs that work a small bit better than other chemotherapy drugs. They can raise a woman's chances of living longer by about 4% (absolute survival increase). But these drugs can also raise a woman's chances of getting some of the bad side effects.18 Many patients choose to take a different type of chemotherapy drug. They would rather have a better quality of life than the small increase in their chance of survival. And some patients choose not to get chemotherapy at all. These are tough personal choices.
Remember that it is OK to disagree with your doctor. Take a few weeks to get information and think about what is most important to you. Think about what care you want and from whom you want to get it. It will be time well spent.
Learn about follow-up care.
In the back of every breast cancer survivor's mind is the fear that the cancer will come back. Breast cancer survivors sometimes catch themselves worrying about every little ache or pain. These fears usually lessen the longer you have been out of treatment.
You should pay attention to any changes in your body if you are a breast cancer survivor. And you should tell your doctor about them. You should also stick to the follow-up care guidelines in the National Comprehensive Cancer Network's Breast Cancer Treatment Guidelines for Patients. The Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition recommends ways to improve the quality of health care for cancer survivors. These include providing all cancer patients with a "survivorship care plan," access to psychosocial services, fair employment practices, and health insurance. See NBCCF for our comments on this report's recommendation.
Ask your doctor to order tests if you have any symptoms you can't explain or that don't go away. Breast cancer can come back:
When breast cancer spreads to another organ, it usually goes to the bones, lungs, or liver. Less often, it spreads to the brain, spinal cord, eye, or bone marrow.
Some patients want to have blood tests, bone scans, and chest X rays done every year. They want to be sure that the cancer hasn't come back. But this isn't recommended. Patients suspect or find most recurrences themselves without routine testing. And there is no evidence that treating a recurrence early improves survival.
Learn about complementary and alternative medicine (CAM).
Complementary treatments are used with standard medical care. For example, taking vitamins along with your standard medical care is complementary care. Alternative treatments are used in place of standard medical care. For example, following a special diet instead of getting standard medical care is alternative care. Both are names for any kind of care outside our country's mainstream medicine.
Why do patients use CAM?
Breast cancer patients are interested in CAM for many good reasons. They want to do all they can to take care of themselves. They want to reduce their chances of the cancer coming back or getting worse. And they want to improve their overall physical and mental health. Some patients try CAM because mainstream treatments have not worked for them. Still others try alternative therapies because they simply do not trust mainstream medicine. Or they like the idea of using natural, holistic, long-standing healing traditions.
CAM is not a fad.
It is an important part of healing for many patients. The truth is, standard medicine has promised too much. It has failed many breast cancer patients. Patients aware of standard medicine's limits continue to look for health care that works, wherever that may be. From a patient's point of view, it doesn't matter if care is standard or CAM. All that matters is what really helps.
Can CAM help breast cancer patients?
Until recently, research on CAM cancer care has been limited. So we don't yet know if many CAM treatments are safe, or if they work for breast cancer patients.
Right now, there are standard treatments that extend lives and reduce the chances of the cancer coming back. At this point, there are no CAM treatments that have been shown to have the same effects.
Still, some complementary treatments may help strengthen your health in general, relieve the side effects of standard treatments, or ease pain and stress. For example, there is some evidence that acupuncture relieves the badly upset stomach many patients feel during chemotherapy.19
The National Center for Complementary and Alternative Medicine (NCCAM) is a government research center in the National Institutes of Health. It's a good place to learn about complementary and alternative care. NCCAM can tell you what treatments exist and what is known about them. They can also tell you about open CAM clinical trials. The American Cancer Society is a group that works on many cancer issues. They also have good information on what is known and unknown about many CAM treatments.
Tell your doctors and nurses about any CAM treatments you are using.
Some CAM therapies can affect other medicines. For example, Saint John's Wort is a CAM treatment for depression. It gets in the way of a drug used to treat HIV infection.20
Not all doctors talk about CAM treatments. This may be because they don't know much about CAM. Or it may be because they aren't trained to combine complementary therapies with standard medical care. Some doctors simply think CAM is nonsense. Don't ask if it's CAM or mainstream. Ask if it works.
Are you interested in learning about or using CAM? If so, be sure to find a doctor who is willing to talk with you about CAM. You need a doctor who will help you sort through the pros and cons of CAM therapies.
"Natural" does not always mean "safe."
We don't know all the risks of some CAM treatments. You should be very careful with these. This is especially true with starting a special diet, or taking herbs, vitamins, and other supplements. The U. S. Food and Drug Administration (FDA) does not control herbs, vitamins, or supplements. Many have not been studied for safety, how they act with other drugs, or if they work. This also means that no government agency checks the quality of the products on drugstore shelves. On top of that, companies often put misleading and unproven claims on their product labels. (For example, a product might claim that it "boosts metabolism and aids weight loss.")
Just because something is "natural" or "organic" does not mean that it is safe. And it may not be good for breast cancer patients. One extreme example is the claim that something from the aloe vera plant can cure cancer. There is no evidence behind this claim. In 1998, a doctor injected aloe into cancer patients. Several of the patients died because of the shots.21 Aloe shots are dangerous and against the law.
Don't ask if it's CAM or mainstream. Ask if it works.
Doctors and patients should look at CAM with an open but critical mind. This is exactly the same way you should look at mainstream care.
Whether you're looking at a CAM therapy or a mainstream treatment, you need to ask the same questions:
It's important to understand the good and bad points of any treatment before you try it. For some CAM care, no one knows any specific benefits for breast cancer, but the risks are very low. Breathing to relax, meditating, and yoga are examples. Many breast cancer patients use these things in their lives. And many women are comforted by them.
18. Early Breast Cancer Trialists' Collaborative
Group. Effects of chemotherapy and hormonal therapy for early breast cancer on recurrence
and 15-year survival: an overview of the randomised trials. Lancet 2005; 365(9472):
Quality Breast Cancer Care Means:
© 2001, 2002, 2006 National Breast Cancer Coalition Fund