CancerCompass message board discussion started by jeane c. on 1/17/2005 http://www.cancercompass.com/message-board/message/all,1487,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband has soft tissue sarcoma, been in remission going on 4 years...now the battle, he is putting off his yearly appt. the doc's told him WHEN it comes back it will with a bang...when he frist developed this in less then a month it was as big as a soft ball. It was bad and had engulfed the lymp glands under his arm. Thank God it had not gotten into the glands but why act as if it is over?? It isn't. He has had 3 skin cancers removed in the past 4 years, I guess I just need to vent. He is already 6 months behind on the yearly and he is coughing...Jeane jeane c. Mon, 17 Jan 2005 00:00:00 GMT Wow I too have (in remission) soft tissue sarcoma ... (ewings/PNET) it is normally a childs bone cancer. mine was (mass) the size of a small basket ball.. but to look at mine (it was on my right hip) it was a lil bigger than the palm of my hand, hot to touch hurt sooo bad, and almost a black, with alot of like surface veins. when it was found it was removed then 11 days later.....3x the size it was...then the next month i had my resection, and i was told i was late stage3. i am now 1 yr (in march) in remission...i still have my medi-port, cause i have this weird fear of having it removed!?!?!?!?!?! and i have seen soooooooooo many drs and had soooooooo many tests that i understand not wanting to go. one thing that gets me is i cant control that part of my life. i wish u and your family the best and tell your husband i understand...but i also know that i love my girls more than not going. all the best to u. Alice2 Alice2 Mon, 16 May 2005 00:00:00 GMT Tell me more about your ewings in your hip. How did you find out? How old were you? What treatment were you on? If you don't mind me asking you. I had some experience with that, my 12 yr. old had the same. Please tell me more. Louisiana mom Ptouc Fri, 17 Jun 2005 00:00:00 GMT Dear Louisiana Mom, First I was 29yrs old. (1 month from being 30)I had a cyst a year prior to the cancer but it was in the exact same place ....when I had it removed the dr told me it could come back (it was called a lipoma) so I watched it close but what grew there was not the same as before....ewings grew instead... mine, I was aware it was always there, cause it hurt and was so discolored. and very hot to touch. So I called the dr that had removed the other cyst (thinking the lipoma had cameback) he ordered tests then surgery...thats when it all started...after that surgery which the dr. only removed the cyst no tissue around it...because he told me it didnt look good. But we wouldn't know till we get the pathology report back...when we did it was ewings. So 10 days later I had my staples removed and it busted open (that is how quick mine was growing) I lost 3pints of blood in 10 seconds. a month later I was at the James cancer center in columbus ohio having a very big resection. After the resection (2 months) I was doing very high dose chemo, I had to do my chemo in the hospital 4 days straight and I was given 4 different chemo meds. Then 2 weeks after ...I would start chemo again.... after the chemo I did radiation for6 weeks every day except weekends. ewings with my experience is a brutal cancer...in 1 month of the dr finding it and my resection...I was late stage 4 (out of 5 stages) so I thank God and all my drs and ALL the MANY TESTS...for me now being in remission. My drs told me 1 yr remission is a very big step to being "cured" to learn about ewings I learned a lot online! I started with Web MD I hope all is well with your child now. Alice2 Sat, 02 Jul 2005 00:00:00 GMT