Getting a diagnosis

User

Posted 03 Aug 2025 at 11:00

Hi Callanish

That's great news. Hopefully the histology/pathology didn't differ (worsen) from your initial diagnosis. You're now into your recovery, which with dedication and care, will allow you to recover most of your modified plumbing, etc. One bit of advice would be to try hard to get that crucial balance between exercising both body and pelvic floor and allowing time to recover. It's taken me around 12 months to fully understand how things have changed in subtle ways. I thought I understood more than I did when my body was telling me something else. I think you will probably know what I mean in a few months time. Not everybody responds the same to a fixed exercise program. We are all so different.

Good luck ...

User

Posted 03 Aug 2025 at 11:29

There was one nasty shock as when the surgeon was operating he could see the cancer had gone beyond the capsule, so he had to cut around it. Once histology came in then my cancer was subsequently ‘upgraded’ from Stage 2c to stage 3a. That was a bit of a blow. Gleason also changed slightly from 7(3+4) to 7(4+3). However this has just confirmed my decision to get the bloody thing removed as soon as possible. On the recovery front I’m happy where I am, just taking it steadily, improvement seems slow but I’m lucky I didn’t have bad leaks from the beginning after the catheter was removed. The pad is easy to manage and I don’t think about it much. I do seem to have a lot of physio exercises to do plus the PFEs and the pump etc! All seems to take a lot of time. To be honest not sure the PFEs are doing that much, although I understand the science suggests they help with both leaks and ED.

User

Posted 03 Aug 2025 at 14:06

Seems to be happening all too often in the NHS. This is exactly what happened to me. I assume you had negative margins?

So we both have the long waiting for years, sadly, hoping to get regular "undetectable" results. After the shock of my T3a I decided to reduce my, already limited, alcohol to zero (or as near as). Similar I consume red meat and UPFs infrequently - I never had much before, but now I'm even more observant. I've run for decades and that will be maintained for as long as I can. I'm 14 months post-op and have convinced myself, most days anyway!, that PCa is in my past - reality may decide a different outcome, but I'm doing what I can, without getting obsessive about it.

My surgeon said, he believed he'd removed all my prostate and adjacent infected cells, and the negative margins helped to confirm that. He then added that there was little difference at this point in outcomes between T2 and T3a as the surgeons' skills in removing the gland and nerves etc, are key in whether or not any risky tissue was left behind. I trust him, which helped me a lot post surgery as I came to terms with what lay ahead of me.

You're unlikely to be able to shut out the period just before each test, but hopefully, after each good result you'll go for weeks where it drops out of your head as you work through your plumbing ups and downs, and get on with life.

If you can keep adding to your profile as tests come and go, it will allow those whose histology have been upgraded to T3a, which does feel so much worse.

Fingers crossed ...

User

Posted 03 Aug 2025 at 14:31

Callanish, great news on your successful operation and the PSA test being positive.

In your position I would have opted for surgery too, as you said the MRI showed one thing, the biopsy another and the actual organ showed a worse picture than both.

I am concerned that my own biopsy could have missed any cancer cells as they only took the bare minimum of three cores from two areas of concern on the MRI.

I know it's easy to scare yourself to death on this journey but there seems to be plenty of evidence that the scans and biopsies are not the gold standard of diagnosis we are led to believe.

At least I'm on my guard now and not ignorant of my prostate.

Wishing you well for your future recovery mate,

Mick

User

Posted 03 Aug 2025 at 15:03

Thanks mate! Yes it’s a waiting game but I guess that’s the case with most folks with PCa and nobody was ever going to tell me that I’m ‘cured’. I had negative margins, so with the undetectable levels of PSA in my first test the surgeon is feeling optimistic of a good outcome in the long term. He’s a very skilled and experienced surgeon who has done 1000s of prostatectomies so I do trust him. He did warn me that statistically speaking, as I’m stage 3 the risk of recurrence is higher than for 2, but that I should stay positive.

User

Posted 03 Aug 2025 at 15:10

Thank you! I had a 21 core needle biopsy and 9 contained cancer. Just as much cancer was found in the non targeted area compared to the targeted lesion. The surgeon suspects that it didn’t all show up on the MRI because the cancer was occurring patchily throughout the prostate and not always in lesions. One of the advantages of having the prostate removed is that the histology tells you what the real situation actually was and in my case things were a bit worse than the imaging and biopsy suggested. I’m feeling positive about life and glad I went down the surgery route. Even if my leaks don’t improve much I can live with the side effects I have.

User

Posted 04 Aug 2025 at 15:56

Thats great news Callanish re the first PSA, it cannot get any better than undetectable! I’m sure the continence will continue to improve as your body adapts and heals too.
I'm now 8 months post-surgery, and my experiences were/are very similar to yours. I’ve found that the continence has continued to improve, though I’m unsure if it will ever be 100%. I have found that its more of an issue when I have a drink, with the need to go to the loo a lot more frequently than I used to, I guess this is something you have to just get on with. I actually went out dancing and drinking the other night (I'm way too old really but a mate of ours was DJ'ing so a lot of us went). I’m glad I stuck a pad in as the two together did mean I seemed to spend as much time in the loo as I did on the dance floor! :)
I have my 3rd post op PSA in a few weeks, and yes as others have said Its very hard not to think about it. Had some great advice in here though, the best one was to actually accept worrying makes no difference to the outcome, just makes you more miserable/anxious. I try to think like that, though I think we wouldn't be human without a little worry.
Good luck with the continued recovery.
Take care
Gus

User

Posted 04 Aug 2025 at 16:37

Thanks Gus, always good to hear from others about their experiences. Fingers crossed my leaks get better, they are really quite manageable already after 3 months post op except when I have too much alcohol or coffee. Good luck to you with your continued recovery

User

Posted 04 Aug 2025 at 16:57

Just saw your post Gus. Re the frequency. I'm now 14 months post op and I reported to my consultant at 6 months that my frequency was greater than before my op. At that stage I was experimenting with my maintenance pelvic floor exercises. He said it shouldn't be worse. We concluded that my maintenance regime (twice a day exercises were too many). I switched to a gentler, once a day at bedtime. Over the next few weeks the frequency control improved. I believe that the regular exercises were both too vigorous and too frequent, and were leaving my pelvic floor too sensitive/strained. Just a thought ...

User

Posted 04 Aug 2025 at 17:41

Thanks Barry

I haven’t been doing any pelvic floor exercises since the op. I have been reasonably lucky (well as much as any us PCa people can be!) I guess as from the day I had the catheter out I didn’t have major leaking issues, just the odd bit here and there. It used to happen when I played golf, literally just walking down the fairway, or sometimes just randomly if I moved suddenly from sitting. That has practically stopped completely now, but I have noticed the increased frequency when having a beer. I don’t really drink that often tbh, I was tea total for about 6 months after the diagnosis and post op. I didn’t feel any better for not having the odd drink, and enjoyed it socially, maybe it’s a sign I’m trying to unconsciously ‘return to normal’. I have had two occasions recently when I went out and behaved very much like I did pre surgery/PCa diagnosis and noticed a distinct difference. Strangely I now often go through the night without getting up to go to the loo, which I did every night pre op. I think I will start some gentle PF exercises and not go too mad as you have suggested, see if that helps. Sounds like good advice.

Many thanks

Gus

Notification

Join the online community now.