Your Questions Answered
Today, more and more women and men with metastatic breast cancer are living longer, meaningful, and productive lives. While the search for a cure continues, rest assured that metastatic breast cancer can, at times, be effectively controlled for extended periods of time, with ongoing treatment. However, a diagnosis of metastatic breast cancer can be frightening and overwhelming, and you may have many questions when you’re first diagnosed. Here are answers to some frequently asked questions.
1. Am I going to die?
This could well be your first question when you are confronted with a diagnosis of metastatic breast cancer, especially if you have gone through a previous breast cancer diagnosis and treatment. Though you may be concerned by statistics you have heard, keep in mind that every individual is unique. Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer, including tumor type, site of metastases, and personal health history.
2. What does it mean that the cancer has metastasized?
Metastasis refers to the spread of the cancer to distant organs. When the cancer does so, it is known as metastatic, or stage IV, disease. In about six to ten percent of all breast cancer survivors, the cancer has spread to distant organs and is classified as Stage IV at the time of the first diagnosis. In most people with metastatic breast cancer, the metastasis is diagnosed after a cancer has already been treated at an earlier stage.
Treatment will be lifelong and is intended to provide symptom relief, good quality of life, and prolonged progression-free survival.
3. Where can breast cancer metastasize to?
Breast cancer can spread to different parts of the body, most commonly to the bones, the brain, lungs, and liver. Sometimes, other organs are involved. (Breast cancer that spreads to any of these sites is not the same as cancers that originate in them.)
4. How long will I be on treatment?
Treatment will be lifelong and is intended to provide symptom relief, good quality of life, and prolonged progression-free survival. Remember, treatment that stabilizes tumor growth, even without shrinking or eliminating it, effectively controls the disease, and this is considered a positive outcome.
5. How will I be monitored?
Imaging tests, ranging from CT scans and MRIs to bone scans and PET scans, may be used to monitor changes in the size and location of the breast cancer metastases and to assess your response to therapy. Sometimes, blood tests measuring tumor markers, such as CA 15-3, CA 27-29, and carcinoembryonic antigen (CEA), can provide clues to the clinical behavior of breast cancer. While tumor markers can be indicative of tumor behavior, most oncologists do not recommend changing treatment based on tumor markers alone.
6. Why does the treatment for metastatic disease seem “less aggressive” than treatment for early-stage disease? Everything feels less urgent, despite a much more serious prognosis. Why is that?
Treatment of early-stage disease focuses on curing the breast cancer and therefore tends to be immediate and aggressive. In contrast, because there is no cure for metastatic breast cancer at this time, treatment focuses on controlling the disease and permits a more measured, long-term approach to therapy. This allows for more conservative treatment that reduces the incidence of adverse side effects.
7. Should I get a second opinion?
There are many treatment options for metastatic breast cancer. You might want to speak with another oncologist or someone from a major cancer center in your area to clarify the possibilities. Your doctor is likely to welcome your decision to get a second opinion.
8. How can I manage pain and other symptoms caused by cancer and its treatments?
Pain management should be included in your cancer treatment. Sometimes, by shrinking the tumor itself, pain is reduced. A number of drugs are currently available to control pain, and new products are being studied and are expected to be available in the future. In addition, various non-pharmacologic techniques may be helpful, including yoga, meditation, acupuncture, physical therapy, and others.
9. Will I have to change my lifestyle?
Any change in your lifestyle will depend on your symptoms and your treatment regimen. Many people continue living in the same way as they did before receiving their diagnosis – continuing to work, exercise, and generally enjoy life. Others may make minor or more major adjustments until they find their own comfort level.
10. How can I make the most of my relationship with my doctor?
You might find, as many individuals do, that gathering information about the disease and its treatment helps you formulate the questions you want to ask. You might also find it useful to prepare a written list of your questions before meeting with your doctor. It can help, too, to bring someone with you to your doctor’s appointment – to listen in on your conversation and help you remember the details.
11. What is the role of a social worker?
A social worker can help you ride the emotional ups and downs that may accompany your diagnosis. Social workers can help you navigate the healthcare system and assist you in finding resources for help with home care, financial issues, childcare, transportation, and other concerns.
12. Should I tell my friends and family that I have stage IV breast cancer? What should I tell them?
Just as your lifestyle adjustments depend on your individual needs, your decision to discuss your disease with your friends and family depends on your situation. Usually, however, it is best to inform your family and friends that you have stage IV breast cancer and what this means. They are likely to understand and be supportive, and this can be helpful to you.
Reprinted with permission from the Metastatic Breast Cancer Network, mbcn.org.
This article was published in Coping® with Cancer magazine, November/December 2017.