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Advice on options please

User
Posted 27 Jan 2026 at 21:44
Sunshine, my best wishes to your husband and you. The point of diagnosis and being given options was probably more stressful than anything subsequent when I had chosen my "conveyor belt" and had to accept what happened.

The dilemma is that all the main options have similar overall outcomes based on historic data. They do though have different experiences you have to go through, and different side effects.

Surgery is tough short term - the fact the robotic procedures leave only small surface incisions make one forget how major it is. It takes a few months to recover, and you will have a catheter for the first couple of weeks and with most hospitals anti-clotting injections. The side effects range from nearly nothing for a few lucky folk, to long term issues of incontinence and/or erectile dysfunction.

Radiotherapy is easier (though not that easy) and usually is given alongside hormone therapy which makes it more effective. Recovery is quicker. There are short term side effects from the radiotherapy, like tiredness and bowel sensitivity. The lack of testosterone during hormone therapy means low libido, a tendency to put on weight, and various other issues and a fair proportion of patients find those effects remaining after the treatment finishes. Long term (20+ years) there is risk of cancer in the tissues near the prostate that have bad some exposure to radiation, particularly bladder and colon.

Brachytherapy is another form of radiotherapy where instead of being exposed to a beam, radioactive pellets are inserted into the prostate. I haven't experienced that but some people on this forum have done well with it.

Active surveillance sounds like doing nothing, but since they are keeping tags on it it actually means doing one of the above once it is clear the cancer is progessing. That means having a few years without suffering any of those side effects, and if you are lucky and your situation remains stable that delay could be quite a long time.

Another thing people take into account is what happens if the cancer comes back (PSA increase). If you have had surgery they can still radiate the nearby areas where any remaining cancer cells might be, if you have had radiotherapy first time it isn't often possible then to do surgery.

The usual advice is for surgery if younger and radio if older. I think the argument is that after 70 the risk of cancer in your nineties is less of an issue plus your body may take a lot longer to recover from surgery than a younger patient. But on the other hand surgery side effects of poor continence and/or erectile function may (arguably) be tougher to deal with in your fifties. AS delays side effects but for some people the anxiety is unbearable. No one else can say what is right for you.

The other thing I always add is: the statistics on recurrence over 10 years inevitably relate to the treatments as they were over 10 years ago. In that time things have improved. With surgery I think it is mostly more experienced surgeons and some tweaks to procedure but essentially the same operation; with radiotherapy a new generation of machines has been introduced which are better at focussing the beam on the target area and give less risk of cancer to nearby tissues. But we don't yet have the 10-year figures for those!

User
Posted 27 Jan 2026 at 22:46

Originally Posted by: Online Community Member
This is an interesting discussion with Prof Mark Emberton (UCLH) where he touches on the concerns around biopsy and potential mets(51m40m): https://youtu.be/Jigoy-1-aXw?

Hi Simon,

 I found the video very interesting 

I see the men asking him the questions had been on AS for over 16 and 14 years, so it least it had worked for them. 🙂

This video focuses more on his view of active surveillance in general and what he thinks will happen in future.

https://grandroundsinurology.com/changing-relationship-between-active-surveillance-and-focal-therapy/

We certainly need more accurate screening, diagnosis and risk stratification. It will come, I'm sure.

Edited by member 27 Jan 2026 at 23:54  | Reason: Add link

User
Posted 28 Jan 2026 at 10:50

Rolling with it is good advice, but easier said than done sometimes!

I'm glad your husband seems to be responding well to treatment - that's very encouraging. 

User
Posted 28 Jan 2026 at 10:54

Thanks a lot, J-B - that's a really comprehensive overview and it's really helpful to have it set out like that. 

I think my husband is veering towards surgery everything considered, but we've got another meeting with the surgeon tomorrow post MDT meeting so we will see what comes out of that. 

Thanks again for taking the time to respond and set it all out in detail. 

It is much appreciated. 

User
Posted 28 Jan 2026 at 20:52
Happy to be of assistance Sunshine.

Surgery is what I chose myself, but because I had recurrence (PSA rising to over 0.2) I then had salvage radiotherapy which is why I have experience of both. I sometimes wonder how it would have been if I had gone for the radio first time round, but if I had it wouldn't have been with the fancy machines I experienced six years later.

Good luck weighing the options.

User
Posted 30 Jan 2026 at 12:42

Thank you very much, J-B!

User
Posted 03 Feb 2026 at 17:47

Hi ALL

 

After much delibiration and back and forth. I have decided to go on AS.

Gleason 3+4 10% 4 which I think is very low.

diagnosed 3 weeks ago and had a meeting with both a Surgeon and an Oncologist .

i can change my mind at any time . 3 month PSA 1 year MRI Happy with my decision but found it difficult to make one. 

 

Edited by member 03 Feb 2026 at 17:48  | Reason: Not specified

User
Posted 04 Feb 2026 at 05:10
Important thing now is set a reminder for the PSA and MRI then forget all about prostates.
User
Posted 04 Feb 2026 at 09:30

Hi Mick both of us on the same journey. My first PSA on the monitoring phase is on the 24th Feb. My GP surgery will do all the blood work and I’m responsible for making the appointments every three months. 

TrueNTH website https://truenth.uhs.nhs.uk/Default.aspx is holding the information not sure if they do any analysis of the results. Or the local urology department just gets an alert if PSA is above 15 (the alert on my paperwork). 

I will be doing the detailed analysis myself though. 

User
Posted 04 Feb 2026 at 11:17
Hi I believe your GP will get the results, and if increased will notify you, and refer you onto Urology.

User
Posted 04 Feb 2026 at 13:13

I won’t be leaving it to the surgery. I didn’t get informed my PSA was 13 on the first test just some information about reducing cholesterol. 

I copied my results into AI to see if the cholesterol was high or just a bit raised. The first paragraph from AI was “sorry you’re going through a cancer diagnosis”. That led me to phone and ask GP for an explanation. An hour later on the two week pathway. Four weeks after the results. 

User
Posted 04 Feb 2026 at 13:53
DO NOT RELY ON THE GP!!!
User
Posted 04 Feb 2026 at 14:13
Oh dear sounds like your GP isn't very invested in the process. Once you've been referred surely its standard practice to give and receive info? Following a letter from the consultant, my husband was rung up by pharmacist who told him GP had prescribed Vit D as following blood test at hospital his vet D levels were low. His Calcium was fine and so was his cholesterol.

That is a big issue if info can't flow freely between the two organisations

User
Posted 04 Feb 2026 at 14:56
I don't think GPs even see most blood results, PSA doesn't get flagged unless it's " not normal". When on AS any rise is not normal but it is unlikely to be picked up by GPs or their staff.

There have been countless examples of unqualified and inappropriate PSA results interpretation on this forum. I too have experienced it eg being told my PSA of 0.11 is "normal" even though I don't have a prostate.

User
Posted 04 Feb 2026 at 18:24

Hi John

 

Had a glitch  already .I had a psa at the hospital yesterday and its doubled since November! Another test tommorrow to Clarify. I suspect it may be elevated due to the biopsy on the 29th January.

Fair play to the hospital getting back to me so soon.

All the best on your journey

Mick

User
Posted 05 Feb 2026 at 07:30

Hi, Mick

Such a sudden rise PSA will almost certainly be due to the tissue trauma and  inflammation. 

User
Posted 05 Feb 2026 at 16:35

Hi Adrian

 

Yes hopefully

All the best

 

Mick

 
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