CancerCompass message board discussion started by Vampsy on 1/25/2008 http://www.cancercompass.com/message-board/message/all,20326,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello im new to the this website and im so glad I found it.. I have spent 2 days reading all your stories and have been so touched by them all.. Its so nice to be able to find other people in the same situation as my best friend..My Name is Sam/Vampsy im 31 years old from London England.. My best friend is called Jane she is 36 years old and is living with Retroperitoneal Sarcoma.. She first had a tumour in her leg which was removed.. She started getting really bad back pains which she thought at the time was a water infection.. After loads of visits the doctor and loads of pain killers he sent her to a orthopaedic physiotherapist after a an hour long chat about her cancer in the leg he sent her to have a special kind of blood test.. She was referred back to the Royal Marsden in London where she was told that she had another Sarcoma but it was wrapped around her Aorta and pushing onto her Vena Cava they called it a "spindle Cell sarcoma" Her sarcoma is inoperable due to it being wrapped around the Aorta.. She had 25 lots of Radiation over the course of 5 weeks.. And 6 doses over 18 weeks of Chemo the tumour was 10x11cm which was much smaller then the one in her leg which was 4x5 / 16cm..Jane was always under the impression that she would grow old with her cancer under treatment.. Until we see Professor Ian Judson which is the top professor in the whole of Europe.. He explained to us that day that Jane's cancer would shorten her life dramatically which came to a massive shock to us all.. This was 14 months ago.. He said her life span would be 5 yrs from the day she was diagnosed but Jane takes her dates from when the pain first started 2 years ago this month.. Even though Jane stopped her Chemo 15 months ago her tumour has shrunk to 6x5cm which is a very good sign.. He did also make us aware that 50% of the people with this sort of cancer died within the first year.. So Jane is doing very well.. I would also like to add that Jane has 2 children.. Jamie who is 17 and Adele is nearly 15 she is a single mum of 13 years who loves her children too bits they are her world.. Its so sad to sit and have to watch this beautiful loving family fall to pieces by this terrible illness.. Its hard for me aswell being her best friend knowing that there isn’t a single thing I can do to make her better in anyway shape or form.. All I can do is be there for her and the children.. The kids are so strong and so is Jane.. She never sits about mopping about her illness she takes everyday as it comes.. She is a hero in my eyes because I don’t think I could go through what she’s going through..I would love to hear from anyone about any information about this kind of Sarcoma..Be Blessed friends.. Samantha xxx Vampsy Fri, 25 Jan 2008 00:00:00 GMT Hi Sam,I don't have much information as my father was diagnosed last month with RS. His is different, it's liposarcoma not spindle cell. He did have surgery to remove it luckily. He's going to be doing radiation soon. One of my friends sent me articles to read about RS, and the statistics Professor Judson gave you seem to be what I've read too. I can try to forward you the articles if you'd like. I think I have them somewhere in my inbox, but it's pretty grim. I prefer to look at it this way. All the studies I've read started decades ago. And if the survivors have survived with 5 years since diagnosis/detection, then their chances should be a lot better now in 2008. There should be newer treatments that they're not writing up about yet, and all that. So that's how I look at it at the suggestion of my friend who sent me the articles. She reads them in grad school so she understands them better than I do I think. All we can do is hope and pray for the best. I wish the best for your friend. I can only imagine how it would be if it was my best friend. Take care Sam. laivly Fri, 29 Feb 2008 00:00:00 GMT Yeah please send me it.. My email address is --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Thank you xx Vampsy Fri, 07 Mar 2008 00:00:00 GMT