Proton Therapy

Horse1
Horse1 Member Posts: 2
in Anal Cancer #1

Does anyone have any experience with Proton Therapy for anal cancer?

Thanks

Comments

  • tanda
    tanda Member Posts: 174 Member
    #2
    Horse 1

    yes, I had proton therapy for a.c....also had 5FU in pill form(Xeloda/capecetabine)

    Everyone experiences side effects in a slightly different way;. like most others, I experienced fatigue, lack of appetite, bladder and bowel frequency and urgency...diarrhea,soreness,pain etc in  area from vagina to rear(the crescent).

    I was fortunate to be on Medicare because proton therapy  and, in fact, all of my treatment was covered.

    As you  know, the theory behind proton radiation is that there is less collateral damage to surrounding tissues. I haven't seen any long term data about proton radiation for a.c, so I can't speak to that.  I know there is an ongoing study, but I don't think the results have been published.

    This is an older study   https://www.ncbi.nlm.nih.gov/pubmed/25734796

    WHERE were you considering being treated?  Have you had any consultations.  I would be glad to answer any questions, but I don't know if my experience was typical?

  • Horse1
    Horse1 Member Posts: 2
    #3
    tanda said:

    Horse 1

    yes, I had proton therapy for a.c....also had 5FU in pill form(Xeloda/capecetabine)

    Everyone experiences side effects in a slightly different way;. like most others, I experienced fatigue, lack of appetite, bladder and bowel frequency and urgency...diarrhea,soreness,pain etc in  area from vagina to rear(the crescent).

    I was fortunate to be on Medicare because proton therapy  and, in fact, all of my treatment was covered.

    As you  know, the theory behind proton radiation is that there is less collateral damage to surrounding tissues. I haven't seen any long term data about proton radiation for a.c, so I can't speak to that.  I know there is an ongoing study, but I don't think the results have been published.

    This is an older study   https://www.ncbi.nlm.nih.gov/pubmed/25734796

    WHERE were you considering being treated?  Have you had any consultations.  I would be glad to answer any questions, but I don't know if my experience was typical?

    proton therapy

    We have just learned about proton therapy as a potential option. From what we have read and why I'm interested in finding out more about it is the radiation is supposed to be more targeted and provides for less damage to adjoining organs.  My real concern is long term side effects and if I can reduce the chances of long term bowel issue, sexual disfunction ect. I would prefer to go that route.  It doesn't look as if this treatment is available in many areas. I live in Tennessee.

    When did you have your treatment and are you having side effects still?

  • 0626june
    0626june Member Posts: 73
    #4
    Proton Therapy

    When I got my diagnosis, I did research and was very much interested in having proton therapy.  Because I had lymph node involvement, i was unable to.  3 1/2 years later I still have issues with surrounding tissue damage that I would not have had if I'd been able to do proton therapy.  I am happy that it's an option for you.  From my research, it's a good one! I know Dr. Kim at Seattle Cancer Care Alliance is trained in proton therapy.

  • tanda
    tanda Member Posts: 174 Member
    edited January 2018 #5
    Proton Therapy

    Sorry to get back to you so late.  I had pencil beam scanning proton therapy.  As I mentionned before, I had bladder and bowel frequency and urgency during treatment.

    I am almost 3 years out and doing very well.  HOWEVER, there has been some collateral damages.  My bladder muscles were effected a bit and I now go to the bathroom more often than before and occasionaly leak a little.  I was slightly constipated before treatment, had diarrhea during and a month or so after treqatment, and am now more constipated than before  and have to push and strain more because muscles in the pelvic area effected. I do not have a partner so I have not been diligent about using the dilator

    The radiation dr acknowledges the effects on bladder and anal muscle, but not on colon muscle!

     

     

  • tanda
    tanda Member Posts: 174 Member
    edited January 2018 #6
    0626june said:

    Proton Therapy

    When I got my diagnosis, I did research and was very much interested in having proton therapy.  Because I had lymph node involvement, i was unable to.  3 1/2 years later I still have issues with surrounding tissue damage that I would not have had if I'd been able to do proton therapy.  I am happy that it's an option for you.  From my research, it's a good one! I know Dr. Kim at Seattle Cancer Care Alliance is trained in proton therapy.

    Proton Therapy

    There is not a body of  publlished outcome data on proton therapy for anal cancer; so the jusry is still out as to how much better it is than IMRT.

    I think it probably does offer less tissue damage, but because of the area being treated, I doubt that anyone will be completely restored to their original condition.

    I have had breast radiation and have had no lingering problems, even my skin is the same as before, but important internal organs and areas being treated is another story. Pelvic radiation has long term effects.

     

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