I’m thinking of quitting pelvic radiation

hopefulCindy
hopefulCindy Member Posts: 12 Member
edited January 2022 in Uterine/Endometrial Cancer #1

Has anyone here had no negative life altering after effects of pelvic radiation where there is no tumor to direct the radiation to? I’ve only had 5 treatments of external pelvic radiation - IMRT - (7 days after starting treatment) and I’m thinking of quitting treatment. I started constant diarrhea on day 5. After reading about the long term side effects and the quality of life issues that a large percentage have, I think I’d have to be crazy to continue. I was diagnosed with stage 3a Grade1 adenocarcemona originally in my uterus and secondarily in left Fallopian tube. No lymph node involvement and only 1mm invasion, but malignant cells in the pelvic wash. Gynecologist Oncologist originally told me only progesterone pills would be needed - possibly Brachytherapy. Then they found the Fallopian tube involvement in the pathology and said if I don’t get pelvic radiation it could come back everywhere. I’m thinking of changing over to Brachytherapy and progesterone. Just don’t want to be stuck at home, afraid to go out due to bowel incontinance. I like to golf, bike, go out with friends, and want to attend my sons wedding some day without fear of needing to leave the ceremony for bowel issues! I know we don’t live forever and maybe I’ll enjoy the rest of my time without these side effects. I’m so torn.

Comments

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #2

    Cindy,

    I was also Stage 3A and grade 2.

    I had severe diarrhea starting on week 2 and all throughout my radiation treatment. I had 6 weeks external and 3 brachy. I would use anti diarrhea meds daily just to insure I could make it through the 20 minute treatment. I found I could take 1/2 or 1/3 of a pill some days. It was a daily balancing act. I took weekends off from meds and stayed at home. I ate a very low fiber diet, too. I am not sure the diet mattered really.

    After radiation was finished and I found myself still having accidents on my daily walk. I went to my Primary in tears. My Primary recommended 12 sessions of pelvis floor therapy. You can look up those exercises online. I did the exercises with the ball. I found out eating fiber, both soluble and insoluable, helps bowel issues. The therapy and time corrected my situation. I am doing fine now.

    I remember telling the Radiation oncologist, "What if radiation is just not my thing?" To which he replied, "I certainly hope not, you talk to me first." I offer that advice to you. Talk to your doctor about what you are feeling right now.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #3
    https://csn.cancer.org/discussion/comment/1693037#Comment_1693037

    Such good advice, Lyn70!

    Denise

  • hopefulCindy
    hopefulCindy Member Posts: 12 Member
    #4

    Thank you so much Lyn. I saw my doctor today and he talked me off the ledge. I do appreciate you sharing your story. Thank you. My Dr said of his patients getting what I am, 95% have no long term side effects effecting quality of life. Good news!

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #5

    Cindy,

    I am pleased he could reassure you.

    You continue to post and let us know how radiation is going. There is a lot of experience on this site for coping during treatment.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #6
    https://csn.cancer.org/discussion/comment/1693046#Comment_1693046

    Cindy, I have not been on the chat for a few days and am glad to see you have gotten some resolution. I had Grade 3 Stage 1A and had both IMRT and brachy. I realize everyone is different but I have not had any long term effects from the IMRT after 9 years. I really struggled wrapping my head around radiation - and the radiologist always told me "it's your decision" but for me I wanted to do what was best at beating the beast.

    I would suggest finding a good probiotic if you are not taking one and practicing the BRAT diet. I read Lyn's story and thought how terrified I was as I thought I was going to have to take extra sets of clothes with me to work, and you ladies bring me back to it all these years later. We just never forget.

    You can do this. Hugs dear.

    NoTime

  • PrisPeck
    PrisPeck Member Posts: 10 Member
    #7

    Thank you so much

  • Maxster
    Maxster Member Posts: 102 Member
    #8

    Just to add to the good news. Stage 3C1 diagnosed September 2019. 25 rounds of pelvic radiation ended April 2020. No real long term affects. I had some diarrhea during but it was tolerable. My stools are looser now but since I always had the opposite problem before, it's been a nice change! Good luck to you.

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