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Has anyone had diarrhea with radiation?
Prostate Cancer | Last Active: Dec 12 12:27pm | Replies (41)Comment receiving replies
@brianjarvis gett
I had little choice for my treatments. When I pushed for proton treatment, I was told that it was no better than the photon treatment and it would delay my treatment. I felt that I had to do what the urologist suggested or risk getting a dangerous delay. I was concerned about any delay because four years earlier I had a 1.4 PSA and my GP recommended against further PSA testing because I was way over 70 at 78. I had no further tests until 3 years later my GP gave in because I was having intestinal issues. My PSA was 11.1 and my GP recommended a urologist who did a biopsy which revealed 4 out of 12 samples with cancer with the worst a Gleason 4+4. A PET test showed the cancer to be real with it contained to the prostate except for one seminal duct entrance to the prostate. It took 3 months to get to this point, so I felt I had to expedite treatment as recommended by my urologist. I started on Lupron immediately and a month later started 44 photon radiation treatments. I had serious diarrhea and tenesmus issues almost every day and barely managed to finish the radiation treatments and the diarrhea and tenesmus went away. Then the Lupron side effects started, and I had 24/7 heavy sweating, headaches, muscle cramping, brain fog, frequent urination, and pain in fingers and toes. I could not sleep with even a sheet covering me or I would be soaked with sweat from head to toe. After 4 months of Lupron, I refused any more. PSA tests 1 and 4 months after radiation were < 0.1 and my testosterone levels were < 8. Now 7 months after my last 3-month Lupron shot I am just starting to see a reduction in side effects. I am dreading my next PSA in January as I suspect the effects of the Lupron will no longer be suppressing my PSA and I may have a high level. I found your comments very helpful and wish I had been able to get the treatment you did.
Pesqualie
Replies to "@brianjarvis gett I had little choice for my treatments. When I pushed for proton treatment, I..."
@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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@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.