The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

new to this diagnosed ewings sarcoma

nemom4
nemom4 CSN Member Posts: 15 Member
edited March 2014 in Bone Cancers #1
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.
Like Care

Comments

  • bobcummings
    bobcummings CSN Member Posts: 2
    #2
    I have been there
    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
    Like Care
  • KareenBean
    KareenBean CSN Member Posts: 3
    #3
    I'm new to this website as
    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.
    Like Care
  • serenapal
    serenapal CSN Member Posts: 31
    #4
    KareenBean said:

    I'm new to this website as
    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.

    cancer on the scapula
    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
    Like Care
  • KareenBean
    KareenBean CSN Member Posts: 3
    #5
    serenapal said:

    cancer on the scapula
    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

    Don't worry too much
    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.
    Like Care
  • stevenm100
    stevenm100 CSN Member Posts: 1
    #6
    Would like to know about your surgery
    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
    Like Care

Discussion Boards