What a day yesterday... first visit to oncology team to be told that I don't have a stomach cancer but I have a 22cm gist tumor on my stomach which is also affecting my spleen...total bolt out of the blue and shock...never heard of this before and to be told that they are extremely rare just topped it off.I now have to have a series of biopsys and other rests to determine what type it is , treatment and prognosis..never a dull moment..sheesh
My wifes cancer is a different form of sarcoma - Leiomyosarcoma - but can relate to the story of thinking it is one thing then finding it to be something else. Janice was being investigated for sarcoid when they found her sarcooma and when they told us it was not even clear it was a cancer until I looked it up.
The wonders of the forum is we can find people with similar expereinces and diagnosis and that can help to make us feel slighty less alone. Whenever Janice sees a locum doctor it is often fun to watch them look up LMS on wikipedia as most GP's would never encounter a single case in their career.
There is some quite good information on GIST on the sarcoma uk wedsite here you might find useful.
Janice never wanted a prognosis and I really struggled with that, however with rare forms of cancer then the statistics are often not that reliable - I don't think anyone would have guessed her cancer might become stable and ten years down the line she is in really good health and only has an annual check up with the oncology team.
<<hugs>>
Steve
