Getting a diagnosis

Sounds like you are doing it right step by step. Be sure your biopsy will be MRI fusion guided to get extra bites from the lesion. Keep us posted with your detailed biopsy pathology for best comments from members. Biopsy is fairly straightforward and painless.

Hi Callanish.

I'm sorry that you've had to join us but welcome to the forum, mate.

The PI-RAD 4 means that it seems likely the lesion is cancerous, however, only a biopsy will confirm or negate that. We have had cases where PI-RAD 4 and 5's have turned out to be inflammation or benign lesions.

Do you know whether your prostate is enlarged, because that itself can elevate your PSA, as can other non cancerous prostate conditions.

Best of luck with your biopsy results. Please keep us updated.👍

When you talk with the surgeon, questions I would ask are:

How likely is the surgery to be nerve sparing, i.e. to preserve erections? (That depends where the cancer is.)

How good is your urinary continence likely to be? (Some aspects of your anatomy, and the cancer, and the way the operation is performed can influence this.)

How many lymph nodes might be removed? (The more which are removed, the higher risk of lymphodema.)

What are the chances of a cure first time, versus having to have more treatment afterwards? (The chances of needing more treatment increase with the level of risk associated with the diagnosis.)

If you don't like any of the answers, that could be a cause to look at other treatments or surgeons.

Edited by member 09 Feb 2025 at 16:33  | Reason: Not specified

Hi Callanish.

Sorry to hear your diagnosis.

This time last year I had PSA 6.7. Pi-RAD 5. Biopsy 3+4. I was and am a runner. I opted for surgery, which I had in May 2024. I walked a mile the day after surgery (with catheter in) and continued walking every day, extending distance steadily. I was running again a few weeks later. I leaked badly from the start, but at 3 months things were a lot better. At around 4 months stress incontinence, all but gone. Pathology worse after surgery T3a, rather than estimated T2 - this happens quite a bit, apparently. Negative margins - crucial. Nodes not removed. Having regular PSA tests - so far undetectable.

My running is back to what it was before surgery, albeit marginally slower as I'm a year or so older now. I'm 66.

So a young, fit person with a good surgeon (crucial) and with dedication and a positive mindset can get through this. Your stats seem to be better than mine.

A contact of mine has metastasised PCa. Chemo, hormones the works. In his bones, sadly. He's now back to running marathons.

Take your time. Get your head in a positive mind set. Ignore Dr Google as much of the material is out of date as PCa treatments are moving fast - this I think is important. I got involved in a hospital patient forum after surgery and this point was made and acknowledged by the staff. If you choose surgery, be prepared for significant incontinence (most), but it gets way better for nearly everyone with dedication.

Good luck

Edited by member 11 Feb 2025 at 22:00  | Reason: Not specified

Surgery. First choice. Second choice ... surgery.  If you've been offered surgery, the medics have assessed you as suitably fit, so at 57 I'd go for surgery ...

There is the reassurance that after surgery you'll have an accurate histology/pathology which will tell you exactly what you had. MRIs are getting better, but as many folk here will testify, they are by no means perfect. It's helpful to know whether the 3:4 is indeed 3:4 etc. 

Try and ensure your surgeon has completed (successfully) a sufficient number of the procedures and is doing them regularly, this is critical as the best surgeons will likely give you a better chance of not leaving microscopic cells around and saving your nerves.

Surgery is a not to be taken likely. Take care with getting yourself in the best possible condition. Start your Kegels yesterday (:-)) and keep going with them properly every day - for life. Expect that you will have to re-learn bladder control afterwards - it can take some time, though some folk are lucky and sail through this part. 

So my recommendation is ...

Good luck

Hi Cavendish, that sounds like you're on a good path. This upgrade (downgrade??) seems all too familiar. I do wonder if the NHS underplays intermediate diagnoses as their argument might be that PCa is slow spreading and resources are limited so lets down play it a little. Less worry for the patient. However, I saw my scan and quizzed the doctor as even I could seem the boundary bulging. I was reassured (not). I went private (painful raiding of savings). The private consultant agreed with me that it was likely T3, rather than all contained. I had surgery two weeks later.

Pleased you got the important negative margins and you seem to be making excellent progress with your plumbing.

It's a year tomorrow from when I had surgery. Where did it go? Try not to let your regular PSA tests dominate your thinking. Hard at first, but it does get easier each time they come back undetectable. Hopefully you'll be able to post regular undetectable results for years to come. It's helpful for others to keep posting results, I think, especially for the locally advanced of us because if things are going well most folk move on and nobody reads the good stories.

Fingers crossed for you.

Whoops, sorry about the aberration with your name, Callanish.

I was being diagnosed closer to the Covid backlog and during the doctors strike. I didn't get to see an NHS consultant, instead only a nurse specialist (by phone) and a registrar. A consultant appointment was promised, but as all targets were being missed by months - January initial PSA to mid May before I received biopsy results - I jumped out of NHS care. I was to be put on a consultant waiting list to discuss my options after the biopsy. Who knows when I would have eventually have had NHS surgery. I felt I was being managed while I was waiting and waiting. My GP put me on a 28 day fast path. Post code lottery would, no doubt, have been playing its part.

That's all behind my now...

Hi Callanish.

Thanks for your update.

It's fabulous news that your first post op PSA is undetectable. Long may it continue. 

You are making a speedy recovery, especially on the incontinence front.

Please keep updating us. It's very helpful to others going through the same process.

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 

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.