Just diagnosed need a bit of guidance

Prostate Cancer is a complex disease which can affect men in varying ways so experiences may be quite different even in men with a fairly similar diagnosis. You and your husband may find it helpful to view this excellent video that considers various treatments:- https://www.youtube.com/watch?v=zYTU94-8pTc

Another useful link is the "Toolkit", produced by this Charity :- https://shop.prostatecanceruk.org/our-publications/all-publications/tool-kit?limit=100&_ga=2.206109653.795867346.1564408880-1013787081.1564408880

Edited by member 05 May 2026 at 02:14  | Reason: to highlight link

My husband is 55 fit & healthy no symptoms 

Psa 6

PI-RADS 5

gleeson 3 + 3

T3

a lot of information to look at trying to make the right decision both come with side effects which husband is worried about

thank you for advice

Hi Andres,

I had the operation in June 2024.  I would urge you to have a good discussion with the team helping you choose your route.  I was 64 when it was done and had non-nerve sparing which means no erection ever again.  You may be lucky and he keeps enough nerves to still get an erection.  I would ask the team which route gives you the best chance of preserving those erections as having no erections to deal with is a substantial pressure on his mental health.  I would also suggest that asking your GP for a referral for Cognitive Behaviour Therapy (CBT) might be a good move.  I had CBT to help me deal with the impact of PC and it helped so much!

A word of warning - I was offered the same choice until I made my team aware of my Ulcerative Colitis.  They instantly took the RT/hormone option off the table.  Please make sure they know any conditions you're husband has as my UC was in the notes but my team hadn't even read them!

Hi Andres

Sorry to hear about your husband and that you find your self here. However you'll find lots of help and support. You're right it is all very overwhelming and stressful waiting for results.

Your husbands PSA and gleason score are relatively low, you have time to make a decision in which route you wish to take so don't feel you have to rush it.

I took the HT/RT route in the end, although I was advised both routes by different surgeons which made the choice quite hard.

I think surgery was suggested as I was 48 at diagnosis. however a second surgeon said HT/RT was best. Reason being I was T3b (so seminal vesicle involvement) N0M0 (no bone or lymph node involvement).  Being T3b the surgery would be none nerve sparing (the deal breaker for me), and I would most likely have needed salvage RT, so double wammy of side effects.

With surgery you get immediate side effects, which can and generally do improve over time. RT/HT side effects tend to increase as time goes on. 

I'm very happy with the choice I made, things still work albeit less enthusiastically due to the HT, but that should improve as the HT wears off.

If my cancer hadn't of progress as far and surgery could have been nerve sparing I reckon I would have taken that route. Both options have very similar rates in terms of cure. In answer to your original question on side effects, as I understand it there are the following. 

Surgery:

Incontinence & ED - but can improve over time especially if you are younger/fitter. Some people are dry straight away

HT/RT:

ED can develop over time (years)

whilst on HT - loss of libido (ED), hot sweats, muscle loss, weight gain. How badly you're affected can vary greatly, some really struggle, some get of lightly

Both:

Either route will result in dry orgasms

You should look at Viagra (or similar) and vacuum pumps - both available on the NHS, to avoid penis atrophy whilst the nerves recover after surgery or whilst on HT. Worth asking about a referal to the ED clinic if it's not mentioned.

There's the NHS squeezy app for men for pelvic floor muscle exercise, its only a couple of pounds and can help with incontinence so worth starting that now

Urinary strictures can occur from scaring, I think I was quoted 1/10. This can be treated with medication through to further surgery depending on severity.

I hope all that hasn't worried you further, it seems a bit scary reading it back and I've been through it! However your husband has lots of things going for him, low gleason, low PSA, young fit and healthy, a proactive wife who's seeking out help (not to be under estimated!!)

All the best 

John

Totally understand how your husband feels about the side effects. My choice was also very much influenced by the likely hood of needing RT/HT anyway. Why suffer the side effects of surgery too.

During my meetings I was also given the consent forms for HT/RT/Brachytherapy to take away and look at before making a decision. They listed the side effects and probability of them. Might be worth asking if you can look through these too

The NNUH where I was treated also ran a tutorial/seminar on the surgery root which walked you through the whole process, from lead up to surgery through the first few weeks of after care at home, side effects and what to look out for. I felt very informed if a little rabbit in headlights.

Once you have a chosen treatment path it's surprising how much better you feel