Breast cancer is not just one disease. There are different kinds, and metastatic breast cancer is the most virulent and deadly form. However, most people know very little about it. By building awareness and education of metastatic breast cancer, as well as righting some common misperceptions about the disease, we’re shedding a much-needed light for “metsters” and their families.
1. Metastatic is the fatal form of breast cancer.
Metastatic breast cancer, also referred to as Stage IV, is the fatal form of breast cancer. It means that the cancer has metastasized, or spread beyond the breast, to other parts of the body, most often to the brain, lungs, liver and bones. Metastatic breast cancer is a chronic, progressive and ultimately fatal disease. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S., roughly 110 people per day.
2. There are treatments, but there is no cure.
Once breast cancer metastasizes, it is not curable and women living with metastatic are on life-long treatments to try to control it. Scientists and researchers do not yet know why cancer cells spread beyond the breast, however there have been advancements in treatment.
3. Women with metastatic breast cancer can live rich and meaningful lives.
Each woman’s experience with metastatic is unique and significant and many women living with metastatic live rich and meaningful lives post-metastatic diagnoses, whether that means seeing their children graduate, attending family weddings, continuing to work, or going back to school. The past few years has also seen an uptick in programs enhancing quality of life.
4. Little funding of breast cancer research is channeled toward metastatic breast cancer.
Most funding for breast cancer research goes toward awareness, prevention, and early detection. Only around 7% of breast cancer research funding is specifically allotted to finding a cure for metastatic breast cancer. With additional funding for research, some investigators believe the disease could eventually become manageable similar to a chronic disease, rather than a rapidly terminal disease.
5. It’s not the patient’s fault.
Nobody “deserves” a metastatic diagnosis and it does not mean a woman made the wrong lifestyle choices or didn’t catch it early enough. Some types of breast cancer are just more aggressive than others.
6. “Metsters” have their own language.
There are many different terms for people living with metastatic breast cancer. Some people call themselves “lifers,” “thrivers,” or “metsters” rather than “survivors,” because they will spend the rest of their lives with the disease. Others don’t identify with any of these labels. Similarly, some prefer not to use the terms “battle” and “fight” with cancer, or “losing” and “succumbing” because of the implications that they could have done more to win the fight.
7. Being sick looks different for each woman.
Metastatic breast cancer looks different for everyone. Because women with metastatic may change treatment regimens frequently, the side effects of treatment change as well. Fatigue, pain and sleep problems are the most common disruptions. And like everyone, there are good days and bad days.
8. Everyone can help strengthen the community for people living with metastatic breast cancer.
Living with metastatic breast cancer takes a mental as well as a physical toll on both the patient and her family. People can feel alone and stigmatized for their disease, or feel like in some way they have failed. Issues of depression and anxiety can be overlooked. Friends and family members also have a lot to process through this time. More support from friends, family, and the wider community can make a difference, as well as increased awareness and education of metastatic breast cancer overall. There are great resources available to learn more. For example, this moving and informative video by lifer Holley Kitchen advises people in an approachable way on saying the right things to someone with breast cancer.
The Metastatic Breast Cancer Network (MBCN), BreastCancer.org, and Metastatic Breast Cancer Alliance, are all helpful sites to learn more and take action. For young women, there’s the Young Survival Coalition. SHARE Cancer Support offers dedicated helplines and support groups. Helpful guides can also be downloaded from the Cancer Support Community and Living Beyond Breast Cancer.
- Pfizer 2014: “Breast Cancer: A Story Half Told”
- Metastatic Breast Cancer Alliance 2014: “Changing the Landscape for People Living with Metastatic Breast Cancer”
- Metastatic Breast Cancer Alliance: “Survey Results”
- Living Beyond Breast Cancer 2006: “Silent Voices: Women With Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources”
- American Cancer Society, 2013:“Breast Cancer Facts & Figures 2013-2014”