Story by Sharon Anderson
My path changed course in 2002. What was intended to be a surgery to remove a common uterine fibroid became the diagnosis of a rare sarcoma, leiomyosarcoma (LMS.) It’s estimated to occur in only six out of a million patients. The information online was sparse and it was terrifying news.
When I found an online support group for LMS, I sat at my computer and cried. It was a lifeline of information, support and hope. These people were smart! They shared clinical trial data, referrals to sarcoma experts, remedies for side effects and sometimes a kick in the ass to get you to fight for your life. They knew more than my own doctors. Their information saved my life, twice.
Convinced that only research could help come up with treatments that would work for us, I attended the scientific conference for sarcomas, CTOS in 2004. For three days the researchers shared their most recent studies. There was none on my sarcoma, LMS. I cried again.
I vowed to get researchers to study LMS. So began Leiomyosarcoma Direct Research Foundation (LMSDR.) Not only would money go directly for research, (we have no paid staff or overhead) we would help direct the researchers. Since 2005, we have organized a 500 tumor tissue collection donated directly by patients, a blood collection to study circulating DNA, sponsored over eight studies which had very significant targets, put on three LMS conferences, held a patient advocate training and started a Facebook group of over 1400 LMS families.
My survival and the LMSDR Foundation was created by the community. Without LMS families banding together to educate each other, donate tissue samples and fund research, we would have nothing. Together, we are stronger and more effective. I still cry every now and then, but with tears of gratitude.