Synovial Cell Sarcoma?!
Question:
Synovial Cell Sarcoma?
Hello everyone. On Holloween of 2000 I was dianosed with Synovial Cell Sarcoma. Since then, I have searched endlessly for people who've had the same cancer as me, to talk to and give support and get comfort. Find a friend who understands how I feel. I have found some, but unfortunately they were no longer living. For some reason, this cancer tends to be a recurring one if you are able to get into remission. There hasn't been many cases, maybe one or two, were someone stayed in remission for almost 10 years. But only to pass away shortly after..... I would like to have hope that this mean and aggressive cancer will never come back but every once and a while I get scared and feel like I'm living on borrowed time. If I found one survivor, just one, that went into remission and stayed in remission, past 10 years, I think I'd feel a little better. I just wanted to add that I was 26 when I was diagnosed and I am 33 now.
Answers:
Well, my dear, come on over to the Sarcoma Alliance where you will find some kindred souls!! We aren't all dealing with the same subtype of sarcoma, but we are dealing with rare and small groups who all face sarcoma. I know that some with Synovial Sarcoma post there.
http://www.sarcomaalliance.com/master.ht...
Also sign up for the Sarcoma Listserv.
The General Sarcoma (Cancer) Online Support Group
http://listserv.acor.org/archives/sarcom...
You can also become involved with the Liddyshriver Sarcoma Inititative which is raising Sarcoma awareness with a world wide fundraising event:
http://www.liddyshriversarcomainitiative...
They cover all types of sarcoma including Synovial
http://www.liddyshriversarcomainitiative...
As you are well aware Sarcoma is a very rare disease and having a subtype of sarcoma means your cancer is even more rare! We are dealing with the identical issue and only know one person who has survived more than ten years. Sarcoma is a lonely disease.
My son was diagnosed over two years ago and we are still fighting. It is very hard to make friends with other patients and their families and absolutely heart breaking when some lose that battle.