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Salvage radiation therapy after radical prostatectomy

Posted by samadhi @samadhi, Jun 15 8:13am

Hello:
I had radical prostatectomy in 2020 but now PSA is high at 0.26 so radiation specialist recommended salvage radiation to prostate bed.

Can you share your experience with Salvage Radiation? Side effects to
1. Bladder
2. Bowel
3. Sexual function.

Thank you

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budisnothome | @budisnothome | Jun 18 7:04am
In reply to @sansman "I am a 65 year old male who had a radical robotic prostatectomy in the fall..." + (show)
@sansman

I am a 65 year old male who had a radical robotic prostatectomy in the fall of 2017, did the radiation in early 2018.
Everything was good for about 18 months, then I started to pass blood, then started passing “pieces” of bladder.
Had to go to the ER and Dr’s office numerous times. They showed me how to “self-cath” so I did this for the next 3 years, it got to where I was cathing more than 30 times a week.
Having to self-cath at work became a problem with all the UTI’s. (Warehouse environment)
I took early retirement in late 2021 because of the stress increase due to a change of management.
I had a Supra Pubic Catheter installed in June of 2022, this did get my bladder to quit “peeling” but the spasms were horrendous. Took it out in March of this year after the doc said my bladder was “the best he has seen it look.”
No stones or cotton candy, (his words not mine) .
I have had to self-cath a few times since.
The scar tissue and neck constriction is my problem.
The bottom line is my doc says the only thing he can do to give me at least some improvement in my quality of life is to do a cystectomy with an ileal conduit.
Doc says the radiation did too much damage to do anything else.
I’m looking for ideas. Not real fond of wearing the bag full time.

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Sansman. Diddo. I was looking at a bag for life. Found surgeon who specializes in radiation caused problems. Got an AUS installed after urethroplasty and suprapubic catheter for a year. No bag for me. Good luck with your journey.

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samadhi | @samadhi | Jun 18 7:41am
In reply to @sansman "Adding to this is a MRI in 2020 that lit up a few spots on my..." + (show)
@sansman

Adding to this is a MRI in 2020 that lit up a few spots on my hip area around the prostate bed.
Tried taking chemo pills but my breast became so sensitive that I couldn’t wear a shirt.
Ended up getting an orchiectomy which took away my testosterone, thus eliminated the threat of the cancer spreading, but it opened up a whole new can of worms.

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Looks like you have been going through major side effects. My best wishes...

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1 reply
sansman | @sansman | Jun 18 8:01am
In reply to @samadhi "Looks like you have been going through major side effects. My best wishes..." + (show)
@samadhi

Looks like you have been going through major side effects. My best wishes...

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Thank you, it’s been rough but seems to be improving

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VancouverIslandHiker | @vancouverislandhiker | Jun 18 9:24am
In reply to @retireddoc "My MO at Johns Hopkins uses regular PSA test (Labcorp undetectable is < 0.1). When I..." + (show)
@retireddoc

My MO at Johns Hopkins uses regular PSA test (Labcorp undetectable is < 0.1). When I asked him why he didn't use the ultra sensitive test he said, 1) the ultra sensitive tends not to be accurate a low numbers and the results can fluctuate, 2) the PSA would have to rise above 0.1 before it would trigger possible additional testing i.e. another PSMA PET. Makes sense to me. I've had enough anxiety without watching an ultra sensitive test yoyo and not do anything about it.

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Here in Canada I think you need a PSA of over 0.4 to get a good reading on the PSMA PET scan . Our PSA tests in Canada is the ultra sensitive one. Last one for me was 0.056 , prior to that I had 0.072 . I cant see what I did different . I have had surgery and 22 sessions of EBRT ( no hormones or chemicals) about 2 years after surgery. Had surgery 3 years ago. I feel well , and go hiking 4-6 times a week here on Vancouver Island . God Bless to all !

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1 reply
samadhi | @samadhi | Jun 18 9:28am
In reply to @vancouverislandhiker "Here in Canada I think you need a PSA of over 0.4 to get a good..." + (show)
@vancouverislandhiker

Here in Canada I think you need a PSA of over 0.4 to get a good reading on the PSMA PET scan . Our PSA tests in Canada is the ultra sensitive one. Last one for me was 0.056 , prior to that I had 0.072 . I cant see what I did different . I have had surgery and 22 sessions of EBRT ( no hormones or chemicals) about 2 years after surgery. Had surgery 3 years ago. I feel well , and go hiking 4-6 times a week here on Vancouver Island . God Bless to all !

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Looks like you did well with combination of Surgery and EBRT, 22 sessions. Do you know what was the dose? How many Gy? Thanks

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2 replies
VancouverIslandHiker | @vancouverislandhiker | Jun 18 9:32am

At 0.26 , you're under what a PSMA Pet scan would pick up I think . What does doctors say ? Do they feel like there is stray cells in Pelvic bed or ? I had 22 sessions - no chemicals . Bladder wa funny after the 22 sessions for about 2-3 months , but that was about it . I went from PSA 0.14 to now 0.056 over the last year . it takes times for the external Beam radiation to work ....but it does . I had no PSMA Pet scan before my radiation as at 0.14 its too low to get accurate reading for scan . Dr's felt it was in prostate bed , some stay cells producing PSA . I recommend EBRT for sure at some point after surgery . Adverse effects are minimal.

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1 reply
samadhi | @samadhi | Jun 18 9:44am
In reply to @vancouverislandhiker "At 0.26 , you're under what a PSMA Pet scan would pick up I think ...." + (show)
@vancouverislandhiker

At 0.26 , you're under what a PSMA Pet scan would pick up I think . What does doctors say ? Do they feel like there is stray cells in Pelvic bed or ? I had 22 sessions - no chemicals . Bladder wa funny after the 22 sessions for about 2-3 months , but that was about it . I went from PSA 0.14 to now 0.056 over the last year . it takes times for the external Beam radiation to work ....but it does . I had no PSMA Pet scan before my radiation as at 0.14 its too low to get accurate reading for scan . Dr's felt it was in prostate bed , some stay cells producing PSA . I recommend EBRT for sure at some point after surgery . Adverse effects are minimal.

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Radiation oncologist recommends 22 session of salvage radiation therapy to prostate bed. My PSMA PET scan was negative which was done last year.

Threshold to start salvage radiation is when there are 2 consecutive PSA readings above 0.2

Glad to know that you had minimal adverse reactions. Did radiation affect sexual function?

Do you know how many Gray (Gy) of radiation was used?
Thanks

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VancouverIslandHiker | @vancouverislandhiker | Jun 18 9:45am
In reply to @samadhi "Looks like you did well with combination of Surgery and EBRT, 22 sessions. Do you know..." + (show)
@samadhi

Looks like you did well with combination of Surgery and EBRT, 22 sessions. Do you know what was the dose? How many Gy? Thanks

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Samadhi, I dont know what the dose was . At the Victoria Cancer Clinic on Vancouver Island it is very modern. The tech was saying to me they have this new software that boosts strength and also has different patterns . Interesting technology actually. So I dont know the exact GY level, but it did the job well. Jumpy Bladder and bowel for a couple months and that was about it . After EBRT oddly the PSA was at 0.02 right away and then went back to 0.014 and stayed there for about 3 months , then started gliding downwards . The Dr's said this was usual . After 6 months I could really see a PSA drop . No ill effects on sexual health or other . The Dr's were. saying the usual dose was 33 sessions , but with their new software and the nature of my profile , 33 sessions were not needed and that 22 was going to be fine for me . I gather so far they were right ! I didnt have to wait at all for my radiation as I put myself on cancelation list . The Victoria Cancer clinic even had a room for me at their Cancer pavilion , as I live 1.5 hours north of Victoria on Vancouver Island . I have to say their accommodations were wonderful with cancer nursing support there and Doctors came around 2-3 times a day . I was out seeign the sights and walking most of the time . The food was terrific too ! All organic , and hand made . Totally free for us ( I guess we paid high taxes over the years for the service) . I spent 4 weeks there and went home on weekends . Great experience . I did leave them a tax ductile donation of 1000 dollars though . The least I could do !

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samadhi | @samadhi | Jun 18 9:52am

We have visited Victoria Vancouver British Columbia and it is one of the most beautiful places....
Glad to hear that your journey was smooth with minimal side effects...Plus you had good staff, food, accommodation, hiking and care provided from your tax dollars...Thanks for your feedback...

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VancouverIslandHiker | @vancouverislandhiker | Jun 18 10:25am
In reply to @samadhi "Looks like you did well with combination of Surgery and EBRT, 22 sessions. Do you know..." + (show)
@samadhi

Looks like you did well with combination of Surgery and EBRT, 22 sessions. Do you know what was the dose? How many Gy? Thanks

Jump to this post

I don't know what the power setting was - 22 sessions , instead of 33 though . What is the normal range for Grays ? I was fascinated at the equipment though . Get the crew at the hospital to give you a tour of what their equipment is like and process . The radiation rooms at Victoria Hosp was amazing though . Gave me confidence in process .

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