Support for Sarcoma Patients
The Liddy Shriver Sarcoma Initiative is an amazing organization whose mission is to support people with sarcoma, a very rare cancer type. (Candidly, until Alan was diagnosed with pleomorphic rhabdomyosarcoma in 2009, we had never even heard of the word “sarcoma” before.)
They have just published (electronically) A Guide for the Newly Diagnosed Sarcoma Patient. And WOW… tons and tons of great information & resources. This guide will help any sarcoma patient more easily navigate their cancer journey.
A couple of super important facts about sarcoma:
- Sarcomas are a very dangerous cancer that affects the connective tissues, such as nerves, muscles, cartilage, bones, joints or blood vessels. Sarcomas can arise anywhere in the body, frequently hidden deep in the limbs.
- Sarcomas make up only about 1% of total adult cancer diagnoses and 15% of pediatric diagnoses in the United States.
- Often times, sarcomas are misdiagnosed (sometimes they are thought to be sports injuries). Once they are diagnosed, they can be large and difficult to remove surgically. It is imperative that you get a second opinion (fyi… The Sarcoma Alliance provides up to a $500 grant for financial assistance related to obtaining a 2nd opinion.) as well as work with a surgeon who specializes in sarcoma.
- Many sarcomas tend to be resistant current treatment options.
Also check out Liddy Shriver’s Resource Center. You can search for sarcoma support based on your geographic location. As always, knowledge is power… share the power… please pass this on to anyone you know affected by sarcoma.
Read more about the wide variety of available cancer support services.