Radiation pain after 2 yrs

bellasbell
bellasbell Member Posts: 6
edited March 2014 in Sarcoma #1
I am in remission after having liposarcoma. I underwent chemo, radiation, surgery and have been cancer free since my therapy ending in Jan/08. I go every 3-6 months for MRI and CT checks.I am wondering if anyone else is having pain from the radiation treatment(even years later)? My thigh is still hard as a rock and still painful to the touch with bright red blood vessels present. Its fibrosis damage Ive been told. I still have to take pain medication and wonder if this will be a lifelong problem. Its rather depressing to have such pain still. If anyone out there can share, I would love to hear from you!

Comments

  • bmscan
    bmscan Member Posts: 37
    #2
    Not The Exact Same...
    I am presently 3 years clear, and under the same 3 (now 6) month PET scans. I have had 7 liposarcoma tumors in all and have had surgery and radiation for all (except the last ...radiation only). From the 4th tumor on the radiation was with cyberknife which was originally designed for brain tumors only.

    As for side effects, I have not been in continuous pain, but have had problems with my small bowels. It started a month after my last radiation treatment and had two years of periodic hospital visits that got to be quite frequent (...the staff started to know me to well!). The final outcome was surgery last year to remove 3" of my small bowels.

    I haven't had any further "catastraphic" episodes, but I cannot eat high fiber. This has changed my eating habits tremendously!

    This was all an after effect of the radiation which my previous GI doctor fully disagreed with. ...I got another and he had me go through a capsulated endoscopy. That actually showed the damage. I have asked whether the damage will cure itself with proper eating, and was told that the damage will not go away. In fact it is likely that another catastrophic blockage is likely. Months, years, possibly decades away. ...I am planning on the decades answer.

    I trust my radiation oncologist implicitly, but I know that if I have to go through radiation treatment in the future, my mind will definitely be very anxious!

    I don't know that this has helped, but at least you know that it's not all in your mind only. Hope it does wear off for you!
  • Emilyfimily
    Emilyfimily Member Posts: 141
    #3
    bmscan said:

    Not The Exact Same...
    I am presently 3 years clear, and under the same 3 (now 6) month PET scans. I have had 7 liposarcoma tumors in all and have had surgery and radiation for all (except the last ...radiation only). From the 4th tumor on the radiation was with cyberknife which was originally designed for brain tumors only.

    As for side effects, I have not been in continuous pain, but have had problems with my small bowels. It started a month after my last radiation treatment and had two years of periodic hospital visits that got to be quite frequent (...the staff started to know me to well!). The final outcome was surgery last year to remove 3" of my small bowels.

    I haven't had any further "catastraphic" episodes, but I cannot eat high fiber. This has changed my eating habits tremendously!

    This was all an after effect of the radiation which my previous GI doctor fully disagreed with. ...I got another and he had me go through a capsulated endoscopy. That actually showed the damage. I have asked whether the damage will cure itself with proper eating, and was told that the damage will not go away. In fact it is likely that another catastrophic blockage is likely. Months, years, possibly decades away. ...I am planning on the decades answer.

    I trust my radiation oncologist implicitly, but I know that if I have to go through radiation treatment in the future, my mind will definitely be very anxious!

    I don't know that this has helped, but at least you know that it's not all in your mind only. Hope it does wear off for you!

    so...
    So, I just finished chemo for a liposarcoma recurrence in my leg that I'd had surgery for 3 months prior to the recurrence. My mid chemo scans came back NED, but I had to finish chemo anyway. Apparently, I did a pretty aggressive dose and type, so not only took care of the areas of recurrence, but also ground them into the dirt and spit on them so to speak. Now I have to decide whether or not I want to do optional radiation. I've got some time to decide - just finished chemo last week. Knowing what you know now about the long term side effects, would you do the radiation if you were in my shoes? Seems like a high risk for a low benefit to me... I don't think I want to, but am trying to weigh options fairly

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