It’s the beginning of October. NFL teams are going pink. There is a wall of bras outside of my neighborhood mall. My grocery store is stocked with pink ribbon products. Meanwhile, I’m researching my eligibility for long term care insurance. Last November I was diagnosed with metastatic breast cancer, a disease for which there is no cure. The median survival after a metastatic breast cancer is approximately three years. As I come up to the anniversary of my diagnosis I can’t help but wonder if I’ve really just got 2 years left. Or am I an “extraordinary survivor”? I know women who are. I know women who’ve lived 7, 10, even 22 years since their diagnosis. I know more who won’t.
We’ve been told “Early detection saves lives!” and it does, but it does NOT guarantee a cure. Moreover, disease progression can occur regardless of the treatment or preventative measures taken. In fact, close to 30% of early stage breast cancer will eventually progress to metastatic disease. Three out of ten breast cancer patients are dying from the disease. That number has remained essentially unchanged over the last 20 years. Since 1976, the rates of women under age 40 who are diagnosed with metastatic disease has actually gone up approximately 2% a year. Here’s the rub: awareness of early stage breast cancer is high, but knowledge of metastatic breast cancer is low. I cannot tell you how many people have asked me, “Is that good?” when I tell them that my cancer has metastasized. Even cancer patients have asked this question. No. No, it is not good.
Even more frustrating, is that despite these statistics there is no standard of care for metastatic breast cancer patients, no clinical trial data bank that would allow patients and physicians to know what trials are available and where, and funding for research specifically focused on metastatic breast cancer is extremely limited. Only about TWO percent of breast cancer research funding goes toward curing or treatments for metastatic cancer.
A year ago, a group of patient advocates and MD Anderson Cancer Center faculty members began to envision a practice game changer in the fight against metastatic breast cancer. Our vision is to establish an Advanced Breast Cancer center at MD Anderson Cancer Center in order to:
- develop best practices, protocols and standard of care for the treatment of metastatic breast cancer by cancer subtype,
- streamline treatment and supportive care,
- fund clinical trials, and
- establish an information center for study, research and dissemination of information to MBC patients including: a comprehensive clinical trial data bank, tissue bank, and a database of “extraordinary” or “unusual” survivors who live well beyond the 3 year mark.
Of course, this all comes with a price tag; unfortunately, not a small one! Our long term goal is to raise $10,000,000 to make the Advanced Breast Cancer center sustainable. Help create the Advanced Breast Cancer center. Click on this link to donate online. Or email StompOutStageIVBreastCancer@gmail.com for a mail-in contribution form.