1. < Prostate Cancer

Cystectomy yes or no?

Posted by sansman @sansman, Sep 8, 2023

I am a 63 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 my 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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chipe | @chipe | 1 day ago

How common is this condition after salvage radiation?

REPLY
sansman | @sansman | 1 day ago

I was told, “It’s not unheard of but it is rare.”
Let me also add to my previous status. I am better than I have been in years except for the constant pain, I guess you just get used to it.

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1 reply
heavyphil | @heavyphil | 8 hours ago
In reply to @sansman "I was told, “It’s not unheard of but it is rare.” Let me also add to..." + (show)
@sansman

I was told, “It’s not unheard of but it is rare.”
Let me also add to my previous status. I am better than I have been in years except for the constant pain, I guess you just get used to it.

Jump to this post

I am in salvage radiation now and this thread is making me woozy. I was told of “possible” complications such as frequent or burning urination, perhaps hematuria but you poor guys are on a whole different level! I’m at my 17th tx today out of 25 and just yesterday my RO told me that if I have no symptoms at this point ( I don’t) I probably will be OK barring any unforseen complications.
I did take his comments with a large grain of salt, knowing that symptoms may arise in weeks, months or years. But I know the DRs need to project a positive attitude so I get it.
Sorry you guys are going thru this - nobody can predict what will happen to every individual getting radiation but we all take our chances when we hear the word ‘cancer’ and hope for the best.

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1 reply
sansman | @sansman | 8 hours ago

You appear to have the right attitude, defeat is not an option. It took me a couple of years to get that attitude.
Stay strong and keep pushing on
You got this!

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conchman | @conchman | 7 hours ago
In reply to @heavyphil "I am in salvage radiation now and this thread is making me woozy. I was told..." + (show)
@heavyphil

I am in salvage radiation now and this thread is making me woozy. I was told of “possible” complications such as frequent or burning urination, perhaps hematuria but you poor guys are on a whole different level! I’m at my 17th tx today out of 25 and just yesterday my RO told me that if I have no symptoms at this point ( I don’t) I probably will be OK barring any unforseen complications.
I did take his comments with a large grain of salt, knowing that symptoms may arise in weeks, months or years. But I know the DRs need to project a positive attitude so I get it.
Sorry you guys are going thru this - nobody can predict what will happen to every individual getting radiation but we all take our chances when we hear the word ‘cancer’ and hope for the best.

Jump to this post

My experience with 39 treatments of radiation salvation treatment has not been good. Hate to post negative, but want to be adding reality. Had the radiation treatments in 2021 and bladder neck started bleeding in early 2024. Had surgery to cauterize, and that did stop it. Also had a lymphocele form that created a fistula between my bladder and the lymph seal. Infection set in as my bladder was dumping into this. Ended up with a couple of drains and another surgery to try to block the communication between the two. At this time, they also used Omentum(sp) to attempt to fix the tissue damage at the bladder neck. Had 68 HBOT sessions and feel it has helped. The surgery was not successful as it still leaks. Dr says I have too much radiation tissue damage and is suggesting a couple of options that don’t seem worth it with the ultimate decision of cystectomy. Very disappointed in not knowing what could be the results of radiation treatments. There was no mention of the road I have traveled. Not quite sure if I would’ve opted for different treatment or not at the time they make you feel that that is the only option. I think treatments have gotten better And more focused without creating fallout near the treatment sites. I’ve just decided on my own that you can’t take that much radiation without injuring something on its way to fixing what will eventually spread if not treated. Best of luck to you and hoping you have better outcome than many of us on these pages

REPLY
1 reply
heavyphil | @heavyphil | 7 hours ago
In reply to @conchman "My experience with 39 treatments of radiation salvation treatment has not been good. Hate to post..." + (show)
@conchman

My experience with 39 treatments of radiation salvation treatment has not been good. Hate to post negative, but want to be adding reality. Had the radiation treatments in 2021 and bladder neck started bleeding in early 2024. Had surgery to cauterize, and that did stop it. Also had a lymphocele form that created a fistula between my bladder and the lymph seal. Infection set in as my bladder was dumping into this. Ended up with a couple of drains and another surgery to try to block the communication between the two. At this time, they also used Omentum(sp) to attempt to fix the tissue damage at the bladder neck. Had 68 HBOT sessions and feel it has helped. The surgery was not successful as it still leaks. Dr says I have too much radiation tissue damage and is suggesting a couple of options that don’t seem worth it with the ultimate decision of cystectomy. Very disappointed in not knowing what could be the results of radiation treatments. There was no mention of the road I have traveled. Not quite sure if I would’ve opted for different treatment or not at the time they make you feel that that is the only option. I think treatments have gotten better And more focused without creating fallout near the treatment sites. I’ve just decided on my own that you can’t take that much radiation without injuring something on its way to fixing what will eventually spread if not treated. Best of luck to you and hoping you have better outcome than many of us on these pages

Jump to this post

That’s a very tough road you’re on, my friend. I have already had bladder cancer and my urologist did voice concern that radiation might make it turn more aggressive. Hence, my fears…
But I still decided to go with SR because my personality would not allow me to ignore it. Thank you for the well wishes and hope your journey gets better.
Phil

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