So much for planning!

User

Posted 10 Mar 2021 at 15:18

Hi folks,

I'd started a thread on the 'being diagnosed 'forum, but basically I'd been on active surveillance for nearly four years, had three TRUS biospies and never scored more than Gleason 6 and a PSA of around 5. However, on the last MRI they spotted a 10mm PIRADS 4 lesion and recommended treatment.

Since Christmas I've been going through the choices for treatment. My prostate was 50cl, so it was too big for bracy, meaning the options I had were surgery and external bean RT.

I had a much better experience with the oncology side than the surgeons and backed-up with statistics (from the NHS site that has been flagged elsewhere in the forum) I felt I'd have less chances of most side effects going down the RT route.

Anyway I had my first dose of RT yesterday and last night could hardly squeeze more than a couple of drops out. I'd noticed a reduction of flow over the past few weeks, but nothing like last night. I had problems today holding on to the 500ml of water prior to the RT and dashed to the toilet just before the scan. An ultra-sound was organised and they found I had 860ml in my bladder post voiding, which seems to be some sort of a record (not one I'm particularly proud of). They got a doctor to look at me and he said that I needed a catheter or faced kidney problems. The doctor and the nurse then asked me if I was happy to go ahead! I wasn't happy, but understood that it needed to be done. I'm now sitting with a catheter that I'll have in for the remains of my RT (4 weeks) and then another 4 weeks afterwards. The catheter was one of the things that put me off surgery, but I guess that hasn't worked out too well!

I was feeling pretty down, but just writing this has cheered me up a bit. Hopefully the next four weeks will be a bit less traumatic than the first two days.

Best wishes to everybody.

User

Posted 10 Mar 2021 at 19:48

Sorry to hear your situation.

The catheter might prove to be useful as you move through the treatment - many people have trouble holding it in, and you will presumably have the luxury of a valve to turn off.

860ml is quite a lot bigger than most peoples' bladders (typically up to 500ml). If you've had retention for a while, it can cause your bladder to enlarge.

Wishing you all the best for the rest of the treatment.

User

Posted 10 Mar 2021 at 20:09

Bruce

First thing to do is get some instilagel or hydrocaine in case the end of the penis gets sore. I assume you have the Catheter in the penis, I had a suprapubic catheter for my salvage RT.

Have you got a valve and bag or just a valve. I got a locking device for the tap, saves getting wet socks.you can improvise with elastic bands. I found a statlock device better than a thigh strap.

"By passing" where urine comes out the end of the penis past the Catheter is common and a little uncomfortable.

Hope all goes well.

Thanks Chris

Edited by member 10 Mar 2021 at 20:11 | Reason: Not specified

User

Posted 10 Mar 2021 at 20:43

Thanks to both of you.

Chris those are really helpful suggestions and I’ll follow them up.

I’m already suffering from bypassing - every time I try to pee my hand and the catheter is getting covered in it. A district nurse is on her way to hopefully save me!

User

Posted 10 Mar 2021 at 23:38

Hope you are feeling better. An interesting post. I always try to improve my knowledge. I hold 450ml max now. May I ask 3 questions.?

No biopsy has shown Gleason 7 or higher then ?

At 860ml was there any pain then ? Was this purely as a result of 1 RT session ? Or could you have not been voiding fully before ?

Ie would you normally been emptying 500ml ish, ie fullish bladder in 30 secs or less then ?

When you say.. trying to pee.. isn't the bag effectively filling continuously ?

As an aside I had RARP and the catheter was the minor issue (excuse the pun). No discomfort and with leg bag I was out walking most days. Only in a week.

All the best. Gordon

User

Posted 11 Mar 2021 at 08:13

Hi Gordon,

No, none of the biopsies showed higher than Gleason 6, but the results were peculiar with different parts of the prostate showing positive in different biopsies.

There was no pain, but I’d been having problems peeing for four or five years with low flow.It’s what prompted me to get checked. It had been getting a bit harder over the last couple of weeks, but nothing like the night after the first treatment.

The catheter I have has a flip valve. You open it when you are at a toilet. It means your bladder fills normally.

I’m glad to hear that things have gone well for you, and hope I can see the same in a couple of months.

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