radiation
I have to start radiation tomorrow after 12 year post prostectomy. Anyone have salvage radiation and if so what are the side effects like?? Do you need to run to the head like you drank water in Mexico if it irritates the bowel?? Does your urine control go ? TY
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It's not that bad.
I only lasted 6 months after my prostatectomy before I started salvage radiation because my PSA didn't drop to anywhere near zero (it went from 10.6 pre-surgery to 0.53 three months later, then 0.75 three months after that). So, you're extremely lucky!
The side effects were bearable. Yes, you will end up with loose bowel motions, but it's not like you have gastro and urgently need to go. Maybe an extra poo a day and they will be a bit runny. There is a lag effect though and things won't get completely back to normal until a month(?) or so after treatment finishes.
The worst side effect for me was fatigue. I was working throughout the treatment up until about 8 sessions to go when my body cried out 'enough!' and I took a couple of weeks off. Again, there was a lag effect and I definitely wasn't back to normal immediately after the treatment finished.
Apart from that, no real problems at all.
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I was told before starting the radiation that whatever level of continence I was at, I wouldn't improve further. And that was true. I wasn't completely dry 6 months after my RP so I stayed at that level (probably one light pad or shield per day) for many years, but more recently and I'm talking this year especially, I became much worse and I have since had a procedure to deal with it. My urologist said that the cystoscopy that I had before I had my recent operation showed evidence of erosion due to the radiation. So in my experience, the radiation did lead to some long term damage to my urinary system, yes. Nothing that can't be dealt with though.
Secondly, about the hormone therapy. I didn't have it. It wasn't even mentioned. I think it is more likely to be used as an adjunctive with radiation as part of primary treatment, not salvage treatment, but it might depend on other factors.
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Hunter49, for sure I will be following your future path with treatment.
Our numbers are very similar, with my age in the middle (of you now to first treatment)... I am 56 with Gleason 7, 4+3, 5.3 PSA. My PSA actually dropped in the last month to 5.3 from 6.5 (due to stopping excessive working out and supplements) .
Just waiting on the PSMA Pet Scan appoint (4 weeks... ughh). I have been leaning towards radiation, since with my luck, I will be back on radiation in 1-2 years if I do the robotic surgery. But if I could make it 12 years (like you), or even 8 years, I would probably do the Surgery at my age....
Good luck with the salvage radiation...
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so you just have discovered you have it and had no treatment? Not sure why PSA dropped by not excercising. Where you being treated.. I am 2 weeks into radiation no issues and start Orgovyx tomorrow for 3 or 4 months to cut off food supply unless side effects are bad. From what I heard they are there but able to be dealt with
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I was exercising non stop and on hard core supplements, training, etc. I think the supplements were increasing my testosterone and perhaps made my cancer more active. I have been training pretty hard for the last 2 years, intermediately. When I stopped,my PSA dropped from 6.5 to 5.3 in 3-4 weeks.
My PSMA PET Scan is tomorrow (they moved me up 3 weeks) and will be making the rounds between 4 docs next week with the results. My original urologist, and 3 different doctors at UTSW Dallas. Radiologist, Oncologist, Urologist (also their expert on Tulsa Pro) and my original doctor. On my biopsy 10 of 12 cells were active (4 cells have 4+3). 2 are borderline at 50% and 50% and the other two were 70% and 90% I think. MRI shows just one Lesion, PIRAD 5, but it also shows one mildly enlarged pelvic lymph node. But they were not sure what it was on the report, could just be inflammation.
Not too worried on PSMA tomorrow, I figured with a 5.3 PSA, my worse case is probably regional (but it could be worse or better). I will formulate a treatment plan when I get the results Tuesday.. UTSW wants to put me in a study with SRBT, Hormone Therapy & Darolutamide. But it's a randomize study, so 50% chance I get the Darolutamide. The study is looking into how this combo works for intermediate cancer. Figured I would talk to the Tulsa Pro expert too.. See what he thinks (I am probably too late in stage for that). If Scan is negative, that might be an option.
I stopped reading research last week (driving me nuts), and will just wait on the results and will pick the 2 best paths to debate farther. But will for sure, make a choice and live with it, in next 2 weeks.
Thanks
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yes research will drive you crazy. My biopsy had 3 of 18 positive but high involvement. I was a 3+4 and was only on one side. After removal of gland the path report upgraded me to 4+3 and on both sides with perineural invasion cited. I had all lymph nodes removed clean and no positive margins or bladder involvement. My thought is I would lean toward removal see what is really going on. Any oncologist will suggest at least 1 year most likely 2 of hormone therapy with radiation. Surgery was not horrible back to work in 9 days no urinary issues and ED was not an issue until my back pushed on the nerves which lead to 2 12 inch rods and 5 cages. that effected it more than the removal. Do you have any vascular or perineural invasion cited?
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Perineural was noted, here is my biopsy, a lot of crap on there.....
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You have a lot of involvement in a lot of cores. I assume you did not have surgery yet. You are a 4+3 with Perineural which means most likely it has escaped the gland with micro metastasis. I started hormone this week so far just tired and mild hot flash when I sleep but had them before treatment as well. The scan will show if it escaped if it did I would go a radiation treatment if no evidence it escaped then remove it and do hormone therapy before and after surgery. I would hold off on radiation until you see it return. The scan will not show any micro metastasis but good chance there are and if they appear later you can treat them. Your 1st PSA post surgery will tell you a lot. i ran this by my friend at Hopkins who is a specialist in this field and I am paraphrasing his words. Are you doing pills or a shot for ADT?
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Will do Old Salt, I was replying to a different message and then we started talking more.. lol I will make a new thread after I get my PSMA scan.. thank you
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Thanks Hunter. I'm engaged with the Huntsman Cancer Institute's Integrated Health group. The program includes fitness training with trainers, nutrition, massage, and acupuncture. I do 120 min per week of fitness training, all resistance and weights. The massage and acupuncture are great as well.
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Rick: Starting off with a 6-month dose of leuprolide is a bad idea. It's safer to start with a 1-month dose to see if there are any unusual side effects. Then follow up with a bigger dose if warranted.
I also see no reason for an expensive PSMA scan early on.
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