Any tips for external pelvic radiation ?

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hopefulCindy
hopefulCindy Member Posts: 12 Member

Im looking for advice from those who have experience with Pelvic radiation. I found out I had Endometrial cancer Oct. 2021 and had full hysterectomy the day after Thanksgiving 2021. They took my ovaries and Fallopian tubes also. When reviewing my pathology, They found a tumor in my Fallopian tube which changed me from StageI to Stage IIIA FIFO Grade 1. Lymph nodes show no spread and only 1mm invasion. They found malignant cells in my pelvic wash. I start 5 1/2 weeks external radiation next week and they’ve given me no information yet in diet or anything. I’m wondering if there are things I can start this week to help my body. Maybe start eating a certain way or using certain moisturizers. I’m afraid to exercise as I worry getting my blood flowing would spread the atypical cells they found in my pelvic wash. Does anyone have any tips on enduring pelvic radiation ?

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  • cmb
    cmb Member Posts: 1,001 Member
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    Diarrhea is a common side effect of pelvic radiation. This link https://csn.cancer.org/node/319307 talks about this issue and has some suggestions to control this side effect as well as links to diets, etc.

    In addition, I developed radiation cystitis near the end of my radiation treatments, which my radiation oncologist had warned me often happened. It felt just like a urinary tract infection. It was annoying, but went away a couple of weeks after treatment ended.

    Members have had different reactions to radiation. Personally, I found it much easier than chemo, but other women had a much harder time with it. At a minimum, be prepared to feel fatigue during this period.

  • hopefulCindy
    hopefulCindy Member Posts: 12 Member
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    Thank you so much. I want to get supplies/meds in the house before I start. My doctor said the same thing - that everyone reacts differently. Hope you are doing well now.

  • mjacoby
    mjacoby Member Posts: 6 Member
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    Hi Cindy

    I finished 28 treatments of external radiation on 12/29/21. I had some intestinal irritation but it wasn’t bad. I also had some skin sensitivity but that was also minimal. For me it was way easier than chemo. My rad onc recommended unscented soap like Dove and also eucerin lotion. I used the one for eczema. I did experience some tiredness but resting seemed to take care it.

    Hope you have a good experience with it.

    maj

  • hopefulCindy
    hopefulCindy Member Posts: 12 Member
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    I will definitely get those. Thank you so much for this information. I feel so out of control - I guess going thru steps to prepare as best I can calms me a bit.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
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    Hey Cindy, I had both external and brachy radiation back in 2012. External radiation didn't hurt, but it gave me exhaustion like I had never experienced before. Whew! I remember sitting at the office wondering how the heck I was going to move to sitting down at home at 7 pm and falling over asleep. I tried to remind myself that "rest is restorative" and it quickly started to decrease when the treatment ended.

    If I could make one suggestion. I have been a probiotic believer before I did any radiation. I sat down with a dietician who specializes in helping cancer patients before radiation. That was incredible valuable. Before when I was told "Push the protein" I had no idea what that meant. This dietician really laid out HOW I needed to think that statement Here is the kicker. She had shared with me a study of women receiving radiation for cervical cancer faired with/without probiotics. It was DRAMATIC of the decreased instances of dehydration from diarrhea by those taking a probiotic.

    I just want to throw it out there for your consideration. I realize we are all different and each individual reacts differently. I will say, for me, I remember that fatigue though.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    edited January 2022 #7
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    dang it - did it again. I hit post and I don't see it posted above where I am at and so it posts an empty box. Sorry. I am still getting used to the new site specifics.

  • hopefulCindy
    hopefulCindy Member Posts: 12 Member
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    I saw your post and thank you. What probiotic are you taking? My husband has been unemployed for 4 years so Im the one working full time from home and carrying the insurance ( thank goodness for insurance!). I have lots of vacation time and manager said he’d be flexible with my hours. I told him I might take an after nap but I’d make up the time. Thank goodness he’s ok with that! But what did you mean about “push the protein”? Or did you mean probiotic and that was a typo?

  • Maxster
    Maxster Member Posts: 102 Member
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    I had 25 external beam radiation which ended April 2020. I used CeraVe ointment on my abdomen to avoid dryness or burn. I did experience loose stools and tiredness. It was far easier than chemo. I exercised regularly to keep up my immune system, ate 30 grams of fiber a day to keep my microbiome in shape (based on research from MD Anderson), was advised against probiotics for the same reason and take vitamin D daily for the immune system. I wish you the best of luck. I did have a severe diarrhea attack two weeks after the end of radiation which I guess is rather common. So far no ill affects. I still use the vaginal dilator which I believe I can discontinue in April.

  • hopefulCindy
    hopefulCindy Member Posts: 12 Member
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    Thank you Maxster. Interesting you were advised against probiotics. I’m interested in what I’ll be instructed when I go to my first session. Loyola gives out no information until first radiation session which is rediculous. So glad you are not having lasting side effects. That is the scariest part of this for me at 58 years old. Wishing you all best and thanks again for sharing. All the women here have been so helpful!!

  • Lyn70
    Lyn70 Member Posts: 214 Member
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    Hi, Cindy,

    cmb mentions diarrhea with radiation and that is what happened to me. I am Stage IIIA, too. I had 6.5 weeks of pelvic external radiation and 3 internal brachy. I bought this expensive cream for burns only to find I didn't need it. There were no burns or even redness. I did need a less expensive diarrhea med than name brand but I would use 1/4 or 1/2 a pill rather than constipate myself. I drank plenty of water each session to hydrate because you are asked to urinate before radiation. I would practice yoga breathing my entire session. Calm, Slow, Deep breaths, in thru the nose and out thru pursed lips. My center played music for the patients.

    I went to 8 weeks 2x a week pelvic floor therapy. I found this very valuable.

    I use my vaginal dialator faithfully.

  • LisaPizza
    LisaPizza Member Posts: 358 Member
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    I had chemo followed by external radiation, also for stage IIIa - in my case it was filling up my left ovary. Finished treatment 3 1/2 years ago, so there is hope :)

    I didn't really do anything for my skin, and had minimal effects on my skin.

    I also had a lot worse fatigue after chemo treatments than during radiation.

    I usually had a little nausea after each treatment, but very mild and short-lived.

    My problem was with diarrhea, but I was eventually (6 months later) diagnosed with microscopic colitis, which I suspect started after chemo and just before radiation. - no doubt radiation played a part too :) Despite the problem, I never got dehydrated or lost weight. I tried to keep fiber very low per advice - couldn't tell that it helped, and once treatment finished, I found that more fiber was better, not less.

    Regardless of what caused my ongoing diarrhea problem (microscopic colitis, radiation effects, gallbladder removal at same time as hystectomy - no way to really tell), just a few months ago it finally improved, even though I had given up hope. Not back to normal by any means, but the worst of it is better.

    So it can definitely vary greatly. And even when symptoms linger, they may still improve with time :)

  • Lyn70
    Lyn70 Member Posts: 214 Member
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    Lisa,

    Yes, I remember the fatigue of chemo. Naps twice a day! There was not much of that with my radiatiin either. I am sorry you experienced nausea.

    My continued diarrhea was diagnosed as Radiation Proctitis and occasiinaly it still occurs.. I ate very low fiber during treatment as you did witout much effect. I agree that now I think fiber is the key to controling diarrhea. This was confirmed by the pelvic floor therapist, too. She gave me a chart of soluable and insoluable fiber food choices. Both are important.

  • PrisPeck
    PrisPeck Member Posts: 10 Member
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    Thank you so much

  • hopefulCindy
    hopefulCindy Member Posts: 12 Member
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  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
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    Dang it. I am still getting used to this site. Sorry for not replying sooner, I just have not been in to visit and read.

    Cindy, I will explain by what I meant. I use an OTC probiotic - and there are ones at all price ranges for sure! The one I took when I was going through treatment I don't see anymore so I am always looking for a new one but I look for a high count (think billion) live probiotic cultures. I currently am using an Ultra Strength Probiotic 10 (10 probiotic strains) and it seems ok. It might run 15 - 20 bucks? I know there are more and less expensive. Think of this like mustard - it isn't that much so it is easy to experiment.

    On 'push the protein' the tip I got from the dietician was to eat 7 - 10 servings of protein every day. Sounds like a lot, but here is a way to think of it - approx an ounce. 1 egg = 1 serving. 2 oz of cheese = 2. Nuts, meat, yogurt are good. She told me ice cream, not sure, but it was fun and so I got maybe 11 that day? 😋

    How is it going? It has been a few weeks now, and I am cheering you on. I am so sorry I didn't reply to you sooner - if you PM me I promise you stand a better chance.

    Hugs dear!

  • Lyn70
    Lyn70 Member Posts: 214 Member
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    Hopeful Cindy.

    I pulled out my diet and exercise binder from the therapist and she printed my information on soluble and insoluble fiber from this website. It is the University of Michigan Bowel Control Program.

    https://medicine.umich.edu

  • cheryldbell
    cheryldbell Member Posts: 2 *
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    any news on the digni-caps wore for chemotherapy, anyone? My sister was telling me........ I tried on first treatment, trying to keep me life as normal as possible..... work too

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
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    Hello cheryldbell, I posted a link on the other post of "Ladies going through chemo.." I hope that helps.

    Chemo is tough, but doable. Hugs dear one.

  • hopefulCindy
    hopefulCindy Member Posts: 12 Member
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    I never did reply to this- thank you for your input. I did finally start probiotics after treatment but definitely needed the one with billions of different strains to cure my frequent diarrhea. It took months to get my strength back. It’s been over 10 years for you so you give me hope for having many years❤️thank you!!