I need you input please

- % of patients with positive margins

- % needing salvage treatment

- % on one pad or less per day at 12 months post-op

- % who can get an erection naturally or with chemical assistance at 12 months post-op

The problem with comparing data is a) some urologists cherrypick patients with low level disease, while others are prepared to operate on men where it is already known that the outcome might not be great - the data of the cherrypickers therefore looks better, and b) on the NHS, you may get a great urology consultant but there is no guarantee that s/he will actually do the operation.

It is said that you should ensure you get a surgeon who is doing at least 100 RPs a year - you perhaps don't want someone who is just learning or a very senior consultant who spends a lot of time lecturing and not so much practical these days. We paid to get the surgeon we believed gave John the best chance of success although if we had stuck with the NHS we may have had one of his underlings operating under his supervision and that might have been okay.

Which ever route you choose you might find that you can put the whole thing in a box for a while but every so often a blood test pops up, 3 monthly at first, then 6 monthly and eventually yearly. The old anxiety seems to affect many of us around this time.

All these treatments have consequences. It might be worth getting the prostate cancer tool kit, that might help the decision making process. It's free.

https://shop.prostatecanceruk.org/tool-kit

Check my profile if you see where I am at on this journey.

Kind Regards

Jim

Hi Geoff,

We had similar thoughts to yourself when rob was diagnosed. Although it had spread to his lymph node he still wanted the op.

Thankfully for us it felt like it was quickly all over after surgery and life began again. It didn’t go without side effects but continence has been really good….ED still a work in progress but we both handle that part pretty well. 12 months down the line and currently undetectable PSA’s, still a worrying time every 3 months though.

We did find who we thought (and still think) was the most amazing surgeon and person and feel incredibly lucky. We saw him privately initially then got referred to him on the NHS. Unfortunately with lack of knowledge it took me a long time to sort the referral so opted back to private  when the waiting time had increased. There will be lots of amazing surgeons available I’m sure.

Best of luck with your decisions and future treatment.

Hi Geoff - I was operated on at the Marsden hospital London. Many of the uk’s high volume surgeon’s work at the Marsden. Marsden RP surgeons are alleged leaders in their field. Unfortunately this site doesn’t like publishing the surgeons names but he’s listed in the Daily Mail article quoted above. My surgery was very successful and now 4.5 years since surgery every psa has been ‘undetectable’ and no significant side effects - I have an active sex life, bonus. I did a lot of research on who was going operate on me. All the best with your decision!! Cheers

Edited by member 27 Dec 2022 at 10:00  | Reason: Fixed grammar error