Die with one condition, live with other(s)

Posted by jime51 @jime51, May 22 6:19am

I received great news this week: after eighteen months of ADT treating my PSA 6.4, Gleason 7 (3+4, 4+3) PSMA PET three tumors in prostate and activity in both Iliac lymph nodes cancer, my test results have been PSA <.01, Testosterone <10 for a year and I can go off medication at the end of June to begin active monitoring and, hopefully, Testosterone recovery. I received less-good news this week that the radiation proctitis I have from 44 IMRT (26 pelvis, 18 prostate) treatments is permanent. My gastroenterologist will attempt to help me reduce symptoms, but the tissue is not going to recover. My 3-4 loose stool bowel movements and bowel urgency will continue, perhaps interrupted a bit occasionally by Sucralfate enemas or Mesalamine suppositories and confronted daily through the use of Psyllium and probiotic. It's hard to know at the time whether you're making the best choices regarding longevity vs. quality of life, but I'm grateful for progress. Diagnosed at 73 and ending the first round of treatments at 75, we'll see what the future looks like and be grateful for each day.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Congratulations and Cheers!
You might want to check this article. https://pmc.ncbi.nlm.nih.gov/articles/PMC3539292/
The procedure is radiofrequency but completely different than RFA usually given for proctitis. It is a flat surface with exact control for vibration, depth and time. It doesn't just stop the bleeding temporarily, but allows the blood vessels to regrow normally.

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Profile picture for gently @gently

Congratulations and Cheers!
You might want to check this article. https://pmc.ncbi.nlm.nih.gov/articles/PMC3539292/
The procedure is radiofrequency but completely different than RFA usually given for proctitis. It is a flat surface with exact control for vibration, depth and time. It doesn't just stop the bleeding temporarily, but allows the blood vessels to regrow normally.

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@gently Thank you! I will keep this in my back pocket for now. Bleeding is occasional and minimal (spotting) and I'm not anemic. If it worsens, I'll definitely mention this to my gastroenterologist.

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Have they suggested for you to use hyperbaric oxygen therapy (HBOT) to heal the radiation-damaged tissues? I’ve read that it can be effective.

Curious as to whether you used a rectal spacer for your IMRT?

Regarding longevity vs. quality of life —> both are attainable; they simply shouldn’t overshoot your prostate and hit your rectum.

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Profile picture for brianjarvis @brianjarvis

Have they suggested for you to use hyperbaric oxygen therapy (HBOT) to heal the radiation-damaged tissues? I’ve read that it can be effective.

Curious as to whether you used a rectal spacer for your IMRT?

Regarding longevity vs. quality of life —> both are attainable; they simply shouldn’t overshoot your prostate and hit your rectum.

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@brianjarvis I don't think the GI believes my case is that severe, yet. Yes, a SpaceOar gel was inserted about 3 weeks before I started radiation. IMRT tends to blast through everything, and my body has a bent toward over-achieving. According to the biopsy report and Gleason score, the likelihood of my having lymph node involvement was about 3%. I've been treated as high risk based on the PSMA PET scan report, so had the maximum radiation. Being retired is a great advantage, but I have to be careful with my schedule and easy bathroom access.

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Profile picture for jime51 @jime51

@brianjarvis I don't think the GI believes my case is that severe, yet. Yes, a SpaceOar gel was inserted about 3 weeks before I started radiation. IMRT tends to blast through everything, and my body has a bent toward over-achieving. According to the biopsy report and Gleason score, the likelihood of my having lymph node involvement was about 3%. I've been treated as high risk based on the PSMA PET scan report, so had the maximum radiation. Being retired is a great advantage, but I have to be careful with my schedule and easy bathroom access.

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@jime51 Even with SpaceOAR Hydrogel (which reduces radiation toxicity to the rectum by 70%) they still can’t blast away haphazardly and significantly overshoot the prostate. Otherwise, there may still be damage done.

I was retired when I had my 28 proton radiation treatments as well. It was easy to work it into my days. My wife later told me that the short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go the gym, out for a drive, or shopping.

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Profile picture for brianjarvis @brianjarvis

@jime51 Even with SpaceOAR Hydrogel (which reduces radiation toxicity to the rectum by 70%) they still can’t blast away haphazardly and significantly overshoot the prostate. Otherwise, there may still be damage done.

I was retired when I had my 28 proton radiation treatments as well. It was easy to work it into my days. My wife later told me that the short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go the gym, out for a drive, or shopping.

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@brianjarvis Photon (IMRT) treatments that I had were targeted, but this type of radiation penetrates beyond diseased tissue into healthy tissue, certainly more than proton therapy. I had the maximum number of treatments prescribed, and while they didn't advertise this, radiation proctitis is apparently not an unusual result. I was mostly hoping it wouldn't be permanent. With four or more BMs daily, I have to be careful where and when I am and what I'm doing. Leaks or the sensation of leaking is among the features of this condition, as well. I'm embarrassed that my wife has become so proficient at administering enemas and suppositories.

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It sounds like they targeted the prostate and prostate bed to insure lymph nodes were treated. Is that what you recall? As I understand it, the additional treatment to the prostate bed can expose tissue in spite of the spaceoar.

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Profile picture for beachflyer @beachflyer

It sounds like they targeted the prostate and prostate bed to insure lymph nodes were treated. Is that what you recall? As I understand it, the additional treatment to the prostate bed can expose tissue in spite of the spaceoar.

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@beachflyer 26 treatments to pelvis generally, 18 to prostate specifically

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16 months after EBRT I developed severe RP. Curiously, the sigmoidoscopy prep and procedure made the bleeding much less severe, but I still had mucus, wet farts, and urgency. Mesalamine suppositories, more fiber in my diet, and prunes have helped a lot to keep all symptoms under control. I don’t tolerate probiotics very well. They cause bloating, cramps, and gas. I’m also on iron supplements for mild anemia. I don’t use the mesalamine every night, but I’ll use it several nights in a row if I have a flare up. Over time, it, too, causes gas problems. I have to pay attention to keep all these remedies in balance, but it’s better than the alternative.

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Profile picture for nikolai57 @nikolai57

16 months after EBRT I developed severe RP. Curiously, the sigmoidoscopy prep and procedure made the bleeding much less severe, but I still had mucus, wet farts, and urgency. Mesalamine suppositories, more fiber in my diet, and prunes have helped a lot to keep all symptoms under control. I don’t tolerate probiotics very well. They cause bloating, cramps, and gas. I’m also on iron supplements for mild anemia. I don’t use the mesalamine every night, but I’ll use it several nights in a row if I have a flare up. Over time, it, too, causes gas problems. I have to pay attention to keep all these remedies in balance, but it’s better than the alternative.

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@nikolai57 Thank you! Flatulence has been awful, so I’ll try backing off the probiotic. How long do you use Mesalamine daily for flare ups? I eat a lot of vegetables and fruit but not prunes. I appreciate your sharing. Looks like you take Mesalamine until symptoms subside.

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