5 Things You Need to Know About Navigating Rare Cancer
Rare disease: sounds like hardly anyone gets it, right? Turns out that one in ten people will be affected by it, to the tune of 30 million people in the U.S. and 350 million worldwide. Half of these are children. One of them is me.
Last year, I made it into the wrong 1%. An otherwise healthy woman with a weakness for houseplants and vintage china, I learned that I had a ten-centimeter tumor touching my liver, kidney, adrenal gland, and the primary vein in my body. Sarcomas make up 1% of all adult cancers; I was diagnosed with a subtype called leiomyosarcoma (LMS), a cancer of the smooth muscle tissue. It makes up about 0.2% of cancers.
Where you start treatment matters — a lot
Like most people, I started my provider search by asking the doctor at the general hospital where I had my biopsy for a referral. Luckily, a doctor friend did some research and found that the survival rates of patients who were treated at high-volume sarcoma centers were drastically higher than those who were not — which led me to a completely different medical center.
It makes sense if you think about it: when you’re treating a disease that most people haven’t seen, you’re likely to get better results if you go to someone who has seen at least some of it before. For sarcoma…
