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new to this diagnosed ewings sarcoma

nemom4
Posts: 15
Joined: Mar 2010

Hi. Not sure how all this works. I'm looking for others who have dealt with this type of cancer. People who understand what I'm going through. So a little about me. I'm married. I have four wonderful children. Ok mostly wonderful =). I was diagnosed with ewings sarcoma of the 9th rib in October 2009. I have had 8 treatments and surgery. I try to stay positive and happy for my family but I get scared and angry sometimes. I would really like to find people to talk to who understand how hard it can be sometimes. Thanks.

bobcummings
Posts: 2
Joined: Jun 2009

Hello,
I am Ewings survivor of 29 years. When I was first diagnosed (1981) they gave a 50% chance to make it. Luckily I was in the right 50%. Since my diagnosis I have not believed much in the odds and I never will. In my experience a good positive attitude is the key to surviving. Surrounding yourself with people who love and care for you also helps a lot. I had the gamut of treatment from radiation to chemo and many operations. My Ewings was in my left femur and after radiation they put in a steel rod put in to support my femur. I was on crutches for about 5 years. Please email me if you have any other questions or just want to talk. I have been there. bcummings101@gmail.com

Bob

KareenBean
Posts: 3
Joined: Mar 2010

I'm new to this website as well, so it's nice to meet you :). I was diagnosed 6 years ago with ewings sarcoma, by the time they found it most of my right scapula had been eaten away by the tumor. I had 5 surgeries in total, and the chemo, but i'm happy to say i'm healthy now :). I believe keeping a positive attitude and having family and friends to support you is really a big part of overcoming this kind of obstacle. It's not easy and it's definitely not fair, but it won't last forever, and i know i came out of it with a much better outlook on life. For now, just try to stay positive, and know that you're not alone.

serenapal
Posts: 31
Joined: May 2009

I was wondering what your symtoms were. I have soft lump on my scapula where the point is near the spine side had xray didnt see anything dr says probly a lipoma. past 3 months been having pain on my lft arm where the deltiod muscle is not contance but when i move arm certain ways feels like the bone is breaking just had an exray today so waiting to see results most likely nothing. thank you

KareenBean
Posts: 3
Joined: Mar 2010

I wouldn't worry too much, it doesn't sound at all like what i had. It would be constant sharp pain for about a week, then fade away to nothing for weeks at a time. I couldn't actually feel any lumps, the first thing i could actually feel was the top of my humerus bone. It had shifted out of place because the actual tumor had eaten away most of my scapula. Also, i had an xray first thing too, and they could see right away that something was really wrong. So just stay positive, it's probably ok :). It's good you're getting it checked out though, just to be safe.

stevenm100
Posts: 1
Joined: Oct 2012

hi nemom4,
I found your story interesting as I have ewings in my 11th rib, am also not the usual pediatric patient (33 year old guy) and have two delightful children to live for.
I have been through my initial chemotherapy and am facing surgery. My initial consultation with the surgeon suggested removing the ribs on either side and so I would love to hear more about your intereaction with the surgeon and how you deal with three ribs removed.
Thanks for your help,
Steve

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