written by Christine Benjamin, LMSW
Senior Director of Patient Services and Education, SHARE Cancer Support
Every time I hear someone call Metastatic Breast Cancer chronic, it surprises and alarms me. I have never considered metastatic breast cancer to be a chronic disease. I understood from a young age that it was a deadly disease because it killed my grandmother, aunt, and later, my cousin Danielle. After an early stage breast cancer diagnosis two decades ago, I’ve immersed myself in breast cancer education, support and advocacy. I’ve met thousands of women and some men over the years who shared a breast cancer diagnosis. Working and socializing within the breast cancer world increases the chances of meeting sick people. People who die. Still, I’ll never forget my first friend who died from metastatic disease: Nomi Harris. Nor will I forget the most recent death of a friend: Shirley Brooks. Between Nomi’s and Shirley’s deaths there were thousands more people I have known who have died from MBC. Of those thousands, I know 2 women who have no sign of active disease and are not in treatment. There are probably more, but I don’t know them, and they are not the norm.
While metastatic breast cancer could technically fit some definitions of “chronic disease” this term is not usually adopted by those living with the disease. The average lifespan of a person diagnosed with Stage IV metastatic breast cancer is about 3 years. Some people do in fact live much longer than 3 years. I know people who are alive 5, 10, 15, and 17 years after an initial MBC diagnosis. Many of these women have a particular molecular subtype of MBC that happens to have a class of drugs that are very effective in managing the disease. This subtype, HER2+, comprises approximately 15% of those diagnosed with MBC. The majority of people diagnosed with MBC are HR+ or hormone receptor positive. This subtype has a poorer prognosis as does the Triple Negative subtype which makes up about 10% if those diagnosed with MBC. Can a disease where 85% of those diagnosed die in an average of three years be considered chronic?
There may be some initial benefit to a newly diagnosed patient in having MBC called a chronic disease. Chronic disease implies there is hope. Hope serves a purpose and allows one to move through the initial terrifying feelings that accompany the diagnosis. Hope allows one to put one foot in front of the other and get on with the business of living. Hope has its place and is crucial to the human spirit, yet the brutal reality is that most everyone diagnosed with MBC will die from the disease. Calling MBC a chronic disease has far reaching and lasting repercussions that serve no benefit and can harm those living with the disease. Will money allocated to MBC research be cut if the belief is people can live long lives with MBC? Will an alternative narrative negatively impact the progress that has been made in understanding the severity of MBC and how it differs from early breast cancer?
I’ve witnessed family members and friends endure lifelong treatment with harsh side effects that impact every aspect of their lives. Careers are cut short, dreams of having children are shattered, peace of mind is non-existent, sexual function is impaired, isolation and loneliness are the “new normal” and fear and anxiety are ever present. People living with metastatic breast cancer refute the term chronic disease because that term does not reflect their reality.
It’s time for people who interact with the metastatic community to stop using this misleading and potentially harmful description of the deadliest of cancers.