I have Stage IV (metastatic) breast cancer also known as MBC. There is no cure for MBC; oncologists keep patients alive until the disease eventually takes their lives. Basically, I will die of breast cancer; it might be today, it might be in 10 years but it will come eventually.
My oncologist gave me the grim statistics: for metastatic breast cancer patients, 20% will live 5 years; only 10% will live 20 years. The only thing I could do when diagnosed is to take one step at a time and hope I was part of the 10%.
Unfortunately, only around 7% of research dollars goes to study cures for MBC. The number fluctuates but it’s small nonetheless. Researchers use tissues for their samples of people with early-stage disease, not those with MBC. The issue is that 116 people will die of MBC every day and 115,000 will be diagnosed with it.
After my oncologist’s visit the first time, I looked on the internet for some type of support group but couldn’t find one in my area (Richmond). My oncologist offered one but it was open to all cancer patients, not just those with MBC.
I didn’t really find much information on MBC online but I did come across an organization whose focus is breast cancer, especially MBC. Living Beyond Breast Cancer (lbbc.org) a non-profit organization in Pennsylvania. They offer information and support for those with MBC. Each year they hold a major conference on MBC in April in which they have keynote speakers who talk about the latest research on MBC and what is being done to find a cure. I attended this year’s conference where the keynote doctor did give me some hope: there are clinical trials whose focus is on MBC.
LBBC reaches 500,000 people each year for their advocacy efforts. Charity Navigator Organization, which rates charities, has given LBBC a four-star rating 14 years in a row. LBBC has tailored programs to help specific groups of breast cancer patients: women under 45, MBC patients, triple negative patients and men. They offer conferences, webinars, Twitter chats, newsletters, guides and an 800 helpline (888-753-5222). I became interested in the organization, not just as an MBC patient, but as a volunteer. It gives me the chance to feel like I’m doing something about this awful disease; I’m trying to do my part.
I was diagnosed originally with MBC in November of 2015. It had metastasized (spread) to my bones too. My entire skeleton had lesions on it. Not only was there a tumor in my breast to worry about, there was also my bones at issue.
Since then I’ve been on two courses of treatment that didn’t work; by October of 2016, my oncologist put me on the regimen I’m on now. I have been stable with no spread of the disease since then. It’s been over two years. Boy do I feel lucky.
To those who have been diagnosed with MBC, know that you don’t have to go through it alone; there is information and support out there for you.
And there is hope. And know that there are others out there praying for you.