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Anyone experienced anything similar?

User
Posted 28 Jun 2025 at 10:02

 

Hello everyone, I hope everyone is doing well.

I’d like to briefly tell of my experiences, if I may, following a recurrence of prostate cancer and see if anyone else has experienced anything similar.

I previously had treatment for prostate cancer in 2017, continuing to 2020. In early 2024, on-going PSA tests suggested a recurrence. 

There followed sixteen months of trying to locate the disease. I had many different types of scans but they all failed to find any cancer cells. 

After six months, a scan showed apparent disease, very unusually I was told, at the neck of my bladder. 

A camera in the bladder also showed this and a biopsy definitively confirmed it as prostate cancer

My two treatment options were removal of the bladder or drugs management.

I chose the surgery option but a third treatment was then put forward - SABR radiotherapy, which would have to be funded privately.

However, after preliminary scans, the consultant said he could not be 100 per sure of zapping it all and so that was abandoned.  

It was then suggested to try to remove the prostate (there was a high chance it would not be possible due to my previous treatment) to gain access to the bladder neck and surgically remove the diseased area. 

This was done and I was immediately told that everything had gone to plan – a great relief despite the incontinence I now had.

But seven weeks later at the post-op follow-up I was told that no disease was found at the bladder – that the scan must have been a false positive and that biopsy was 'open to interpretation'.

My PSA was still on the rise slightly, so another PET scan was commissioned.  

After a five-week wait for the results, it showed disease in some of the pelvic lymph nodes. 

I've now been put on Apalutamide

There is obviously the big picture but the incontinence four months on from the prostatectomy – which was ultimately unnecessary – hasn’t improved and is quite severe.

In the circumstances, and aware of the ticking clock, I now plan to ask for a urinary sling procedure even though patients aren’t normally considered for the procedure until 12 months of incontinence.

Thank you for reading this, any advice or thoughts would be most welcome as I feel a little befuddled by it all.

I know everyone has their own path to travel and I wish you all the very best on your journey.

 

User
Posted 28 Jun 2025 at 18:43

TT, sounds like you had had a pretty rough ride during the last few years, was there any mention of SABR treatment to the lymph nodes. I had one done on the NHS, the second one was done through our health insurance. Another scan found spread through the lymph system and I am now on apalutamide and decapeptyl injections. I just keep soldering on. Hope it all goes well for you.

Thanks Chris 

 

User
Posted 29 Jun 2025 at 00:28
I can't recall any member here having reported being treated and progressing in quite the same way as you. Unfortunately, diagnostic tools are not perfect and patients response can differ. If spread is located in a few areas sometimes these can be treated but if more distributed you have to rely on systemic treatment. I think it is more rare for damage such as you have suffered through treatment to require a sling but it can happen. Sorry you are in the position you find yourself and hope a sling or another alternative will ameliorate your situation.
Barry
User
Posted 30 Jun 2025 at 13:34

Thanks, Chris and Barry, appreciate your thoughts and insights.

SABR was ruled unsuitable in my case so I'm focusing on the drug treatment and staying fit to try to counter the side effects. That is difficult, however, with my current level of incontinence (about 55g a day).

I'm seeing a consultant privately tomorrow to see about the possibility of getting a sling, although it seems the drug treatment may weaken the tissue and muscles that  are required to make it effective.

An artificial urinary sphincter, however, looks more viable - albeit a bigger procedure. I guess the NHS would be unwilling to fund that, however.

If all else fails, I'll try an external catheter. Got a trip planned to watch the Ashes in Australia this winter so I really need to find a way to manage the leaks!

Thanks again for taking the time to respond. All the best to you.

 

 
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