Uwings Sarcoma

katy04
katy04 Member Posts: 3
edited March 2014 in Sarcoma #1
i have Uwings Sacoma. i was diagnosed in aug of 2003. i am 17. im still doing chemo, and i might be starting radiation soon. Anyone have comments on radiation in my case, or any...?

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #3
    Hi,
    I had an undifferentiated sarcoma, but it was treated using a Ewing's treatment plan. My radiation did not have much of an effect on me, but it depends on where the tumor is as to what side effects you get. Basically, by the last of the 5 weeks, I was a little tired, but that was my only problem from it. I had mine done in September and October of 02 when I was 17. Hope this helps.

    Jason
  • MaryLouise
    MaryLouise Member Posts: 1
    #4
    my 19 year old son was diagnosed with a ewings type sarcoma in his lower back when he was 14. Half way through his year of chem he had 2 surgeries and proton beam radiation at Mass. Gen. hospital. the rad. was no problem for him, but he had to stay out of the sun for a while. also, when they opened him up to remove tumor from a big vein in his chest, at the same time they zapped the area with intraoperative radiation. It worked really well. it's great that this type of tumor is so sensitive to radiation!
  • VLTravis
    VLTravis Member Posts: 1
    #5
    MaryLouise said:

    my 19 year old son was diagnosed with a ewings type sarcoma in his lower back when he was 14. Half way through his year of chem he had 2 surgeries and proton beam radiation at Mass. Gen. hospital. the rad. was no problem for him, but he had to stay out of the sun for a while. also, when they opened him up to remove tumor from a big vein in his chest, at the same time they zapped the area with intraoperative radiation. It worked really well. it's great that this type of tumor is so sensitive to radiation!

    Hi, I was recently diagnosed with Ewings Sarcoma, specifically PNET (Primitive Neuro Ectodermal Tumor) in my lower back (L2 vertebral body and soft tissue around that part of my back). They saw some tissue in my big vein (inferior vena cava) and they think it may either be a clot or part of the tumor. How did they identify the tumor in the vein for you and which vein was it? Did they surgically resect it from the vein and then put the vein back together?? Right now, they put me on anticoagulants because they think it is a clot, but the radiologist who read the scans is not so sure...
  • MelAull
    MelAull Member Posts: 2
    #6
    MaryLouise said:

    my 19 year old son was diagnosed with a ewings type sarcoma in his lower back when he was 14. Half way through his year of chem he had 2 surgeries and proton beam radiation at Mass. Gen. hospital. the rad. was no problem for him, but he had to stay out of the sun for a while. also, when they opened him up to remove tumor from a big vein in his chest, at the same time they zapped the area with intraoperative radiation. It worked really well. it's great that this type of tumor is so sensitive to radiation!

    I recently read somewhere that some sarcomas are sensitive to radiation, but it didnt say which. My 13 yr old daughter had a lump under her breast. She didnt feel any pain in it until after they did an ultrasound to see if it was a solid or liquid mass. Not long after the ultrasound the lump began to become sensitive and shrink quite a bit. I'll have to ask the dr if the little radiation from the ultrasound would cause that.
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • Richellejb
    Richellejb Member Posts: 1
    #8
    VLTravis said:

    Hi, I was recently diagnosed with Ewings Sarcoma, specifically PNET (Primitive Neuro Ectodermal Tumor) in my lower back (L2 vertebral body and soft tissue around that part of my back). They saw some tissue in my big vein (inferior vena cava) and they think it may either be a clot or part of the tumor. How did they identify the tumor in the vein for you and which vein was it? Did they surgically resect it from the vein and then put the vein back together?? Right now, they put me on anticoagulants because they think it is a clot, but the radiologist who read the scans is not so sure...

    VLTravis

    How are things going?

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