Metastatic Breast Cancer Awareness: Speaking Out for the 30%
Breast cancer is a tricky beast. Over 90% of the women diagnosed with stage I or II breast cancer will survive five years. We celebrate their survival with pink ribbons and balloons every October, but some people feel left out of the celebration. They will be in treatment the rest of their lives for metastatic breast cancer (MBC). Many of those five-year survivors will join the 30% of breast cancer patients who have metastatic disease.
October 13 is the day during Breast Cancer Awareness month when we celebrate their courage and dedicate ourselves to doing more to end breast cancer.
No one knows better how tricky breast cancer can be than Cate Edwards, daughter of Elizabeth Edwards. Cate has recently become a spokesperson for the Advanced Breast Cancer Community. When her mother was originally diagnosed in 2004, Cate was 22. Her mom seemed fine after her original treatment.
Cate describes what happened when her mother’s cancer recurred in 2007. "Her focus changed from ‘beating’ cancer to not taking life for granted. We knew she would have breast cancer for the rest of her life, but we did not know how long that life would be–2 months, 2 years, or 20 years? Like all women facing advanced breast cancer, this uncertainty affected my mom differently from day to day. Some days she was sad. Some days she was just happy to still be alive, and would say, ‘None of us know how much time we have left. I'm no different than anyone else.’ And still other days she was filled with hope.” Her mother lived with MBC for three years until her death in 2010.
Cate’s story is just one of many on the Advanced Breast Cancer Community’s website. The site gives a voice for others who have advanced breast cancer and provides a comprehensive list of sources for information and action.
If early detection catches people’s cancer before it has spread, why do 40,000 people still die every year from breast cancer? What don’t the rosy five-year stats show? Breast cancer can recur many years later. My own oncologist told me that the longest he had a patient go with no evidence of disease was 21 years.
Although there have been advances in keeping folks with metastatic breast cancer (MBC) alive longer, it is still a devastating diagnosis. I have known a few people whose stage IV disease has been beaten back until it is undetectable, but MBC patients live with the uncertainty that Cate Edwards describes. Most are in treatment for the rest of their lives or until they decide they want to discontinue treatment because it isn’t working. For these women a report that their disease is stable constitutes a good day.
People with MBC want to see more research into what causes breast cancer to spread. If 30% of breast cancer patients have MBC, they would like to see 30% of funds going to research about metastasis and treatments for MBC. They point out that 100% of breast cancer deaths are from MBC, so it makes sense to concentrate resources in this area. They want to be visible at breast cancer awareness events, not shuffled to the side for fear of scaring newly diagnosed people.
Hope for MBC patients is different from hope for a newly diagnosed patient at Stage I, II, or III. Hope at Stage IV is hope that treatment will keep the cancer from spreading further or maybe even shrink it. It is hope that this treatment will have few side effects and allow them to continue work and take care of their families. It is hope that treatment will allow them to see a child start kindergarten or graduate from high school. And at the very end, hope may change to hope for a peaceful death surrounded by people they love.
On October 13 we recognize that breast cancer is a tricky beast. We can’t rest until it is defeated completely.
Here are a few resources if you or someone you know has advanced breast cancer.
Advanced Breast Cancer Community provides many links to advocacy and help organizations.
BCMets.org is the oldest on-line support group for people with MBC
Inspire is an on-line support community for advanced breast cancer
Metastatic Breast Cancer Alliance is a group of 15 cancer charities focusing on metastatic breast cancer.
Metastatic Breast Cancer Network is a patient-led advocacy group.
Metavivor works on providing resources and advocacy for research.