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Has anyone had diarrhea with radiation?
Has anyone in the Forum had RT to their lymph node basin only and then experienced diarrhea during treatment? How did you handle it?
I’ve just completed my 15th VMAT IMRT treatment to my lymph node basin only. I started experiencing diarrhea two days after the 14th treatment and hours after the 15th treatment. My oncologist doesn’t believe that it’s connected to the radiation because he’s avoiding the bowel and previously treated prostate bed.
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@pesquallie As often happens having different medical teams, our experiences were totally different. I think that I was fortunate in having selected a medical team that was open to working with me.
When I was initially diagnosed with PCa in April 2012 (at 56y), my first comments to my urologist were “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” From that point on, it was about self-advocacy and shared decision-making.
With a localized 6(3+3) and PSA of 4.2, my urologist recommended surgery; (my wife agreed with him). I told them that the data showed that active surveillance was the preferred path. So, we did active surveillance.
There were at least a half-dozen decision points where we weren’t in agreement on the treatment path. I never felt pressured or that I had to do what the urologist/radiologist/medical oncologist suggested. It was always about self-advocacy and shared decision-making. When their argument was stronger than mine, we went with their recommendation; when mine was stronger than theirs, we went with my recommendation.
From my view, it was me who was going to have to live with the outcome of the treatments (not them) so, I had to have a voice in that decision.
Ultimately, I decided on 28 fractions of Proton + SpaceOAR Vue + 6 months (two 3-month injections) of Eligard.
So far, everything has gone just as planned and expected.
My next PSA test is on December 15th. I’m looking forward to seeing if things are still going as planned and expected, or (if not) if we’ll have to go with Plan B. (And yet, I wouldn’t be completely honest if I didn’t admit that every time my MyChart indicates “you have another PSA test result” that I hesitate just a bit….”)
Whichever way it goes, we’ll handle it appropriately.
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4 Reactions@pesquallie Don’t beat yourself up for your decision! Your situation called for quick action and your RO was correct in that long term outcomes are the same for photon vs proton.
However, SE’s with proton are supposedly less due to their lack of penetration of healthy tissue. But there ARE men who’ve suffered SE’s similar to yours even with proton radiation; it is really a function of YOUR response to radiation.
This is why your team gives you (or should) a pamphlet with a list of all possible SE’s and a warning that they could be severe in a small number of cases.
Diarrhea and tenesmus are kind of the same animal except one produces a stool and the other doesn’t, which is way worse- - I had it myself after RARP and it almost killed me, no lie…ugh!!
But you do seem on the road to recovery so that’s a big plus. If you ever do need to use ADT, ask for Orgovyx - as an oral tablet, MUCH less of the initial blast of Lupron and if it bothers you, you can discontinue it and be done with any SE’s in about 3 days…it’s far from perfect but amazingly well tolerated by most people. Best,
Phil
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5 Reactions@heavyphil
Phil, thanks for the comments. I have felt so alone in my treatment because the people I knew who had received similar treatment had only minor side effects. I have not seen any studies that measure the total harm done by treatments like Lupron. There are the obvious side issues like mine but what about the bone, joint, heart, liver, and brain type damages? For many people does ADT cause more harm than benefit?
@pesquallie
The SpaceOAR saved me from 90%_of the diarrhea. I started taking Orgovyx in August and expect to be done in February 2026, subject to my readings then.
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1 Reaction@pesquallie Yes - for many it does and the issue is hotly debated even as we speak.
However, it is well documented that ADT does make a clinically significant change in outcomes for those of us with higher Gleason scores, higher Deciphers and various pathologies like cribriform, IDC or spread beyond the gland.
Look, nobody gets through cancer unscathed. We’ve all seen women in waiting rooms wearing kerchiefs over their bald heads, other patients looking like death warmed over, dragging their IV poles up and down the hallways.
Whatever cancer they have it’s probably worse than this; that doesn’t change the fact that you were hit especially hard by the side effects of ADT. But I think in the long run, you will look back - in total remission or possibly even cured and realize that it was all worth it. Best,
Phil
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2 Reactions@bellasdad, have things improved with time?
@colleenyoung - I just passed the 3 week mark and things have improved dramatically over the past two days. Doctor had me on prednisone so I think that caused me to get up several times a night. Bowels are starting to normalize. Overall, I can't complain but there were a few days that I couldn't say that.
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1 Reaction@bellasdad
Many of us have been on prednisone, for a long time in many cases. I was on it over 2 1/2 years because I was taking Zytiga. Never caused me any sleep problems. We’re definitely like to hear from other people about their experience.
How much prednisone were you taking? 20 mg/
@jeffmarc - My oncologist had me on a dose pack two different times. I guess it helped some...would not want to know what it would have been like without it. He never has mentioned Flomax.
Natural to have bowel disruption during and found it much worse in the months following radiation. I suspect many of us crapped all over ourselves on the way to the bathroom. I now understand why women complain about leaving the toilet seat up. It's one more step you have to go through during extreme urgency when seconds matter. Just gotta laugh at the absurdity of the whole thing and then clean the mess up. The literal shit we will walk through to stay alive.
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