Stop taking HT ?

Hello Louise (Louise73) 

So he's a Gleason 8, Initial PSA 28, T4a/T4N0.

Personal opinion, no stick with it - he's not on it for life and I assume he's on a "Curative Pathway". I wouldn't be taking advice from the GP either - they lack experience in Prostate Cancer treatments - he needs to speak to his oncology team.

OK - if he comes off it early for quality of life - what if it comes back? What treatment then?

I've been on HT for almost 4 years, yes, I have had almost every side effect going but I value medical advice and I know my team want to keep me alive. I am a T3aN0M0.

There's other cures for hot sweats apart from sage- ask your GP for Medroxyprogesterone - fatigue and lethargy happen, when I suffer I just take the dog for a walk. I am aware it's a question of quality of life but I can't go against medical advice.

At the end of the day, it's his personal choice - let me know what you think - I can signpost you to further help if you think he would accept it.

Best wishes - Brian.

I agree with Millibob ,

Any help to keep the cancer away at this stage is good for you even with a few side effects.

The brain fog is old age. The sexual stuff cal be over come by various means - see your doctor.

The standard of life is a mental thing and should be addressed by talking or prescribing professionals.

Look, it’s not easy nor is it nice but we are men and we can overcome, we are behind you so grab life by the scruff of its neck and enjoy each day saying “I will survive”.

Hello Louise,

I have to disagree with Millibob - and agree with him at the same time !   I was getting all sorts of strange things going on - way more than the "usual" side effects (most of which I didn't actually get). I wanted to try and rule out all the possible causes...........stopping the HT early was one of them. Another was B12 levels - get this checked, I was way down !! There is quite a bit of "informed and reputable" opinion online regarding giving HT for shorter periods than what has long been considered the usual period. I would not have asked my GP on this. I floated this past my cancer specialist nurse - within a couple of hours I had a call from the Oncologist !  After some lengthy discussion on this it was stated by the Oncologist that the risk of my coming off HT early was minimal - I did stop early, after 18 months instead of 24. 

As lots of people say on this site - "everyone is different". I was Gleason 9, PSA 19, contained, no discernible spread, "curative" pathway.............................BUT ...I am in my 81st year, which puts me and your hubby way apart. My outlook is hugely different from his. He could reasonably expect another 25 years ............I certainly wasn't looking that far ahead !!  Two years of HT misery means entirely different things to me compared to him.   If it all goes pear shaped I go back on the HT............but I will have had 12 half-decent months in the mean time.  Certainly consider it with him - but with the experts on board !           

I had my last HT "top up" in Sept 2025, I think most of it has leached out me by now - just had my latest PSA - 0.05, my MDT is happy with that and so am I. I do not regret stopping early in the slightest - but what I did was based on what my MDT had to say about it, as much as I did.

Unfortunately, the ultimate decision is down to you two - my story applies to me alone !.

Hi Louise73,

You haven't said how long your husband is due to be on HT or how many months there is left to go, but the important thing if he is seriously considering this is to speak to the experts.  Whilst your GP will have an opinion, they are not the ones in control of the treatment so you need to speak with his oncology team.  It may well be that they can offer another HT drug which causes less side effects or something to take alongside the existing medication which will ease the symptoms he is having.

I agree that quality of life is important however by thinking long term, and hopefully this treatment is aimed as a cure, the difficulties being experienced now will be well worth it.

Best Wishes

Brian  

Thank you for your considered reply. Yes it is a curative pathway. He is very reluctant to take yet more hormones to offset the sweats but I am trying to persuade him. He’s just had a 3 month injection so it’s fixed now for that period of time but I will get him to ask about an alternative. His mood is exceptionally low. This isn’t easy! 

Thank you for replying. 

Thanks for your insight. I have also seen information about the trials for treating men with lesser doses for shorter periods of time - it’s interesting. He’s having a full blood test done next week but the B12 thing is likely now that you have mentioned it, because we don’t eat red meat, and it’s been flagged before. He’s taking lots of other supplements and annoyingly we have overlooked this one for some time. 

Thank you. He has his first review with the oncology team at the end of this month. He’s on month 7 of 24 and has 3 monthly injections. I do think the first few weeks are the worst (?) and over time things seem to adjust again because before this injection he was doing alright on the whole. This is all still new to us so we’re getting to know the pitfalls! 

Hello Louise (Louise73 ) 

I know what men are like at accepting help - would any suggestions help?

Do you have a "Maggie's" near you, this is a cancer charity where you can drop in, have a brew and chat things over - no appointment required.

There's Andy's Man Club (it's not only for men thinking of taking their own life) and there's also Men's Sheds. There's also of course exercise and possibly the Gym.

At Macmillan we could pair him up with a "Buddy" for a telephone chat each week -it can be about anything it can even exclude cancer - link here - Macmillan Buddies.

There's also our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week). They are there for both of you - why not give them a call and have a chat.

I know it's hard (I've had the 2 weeks of hell during my HT journey) but sometimes just reaching out and accepting help can just be that trigger you need.

Best wishes - Brian.

Thank you. All great suggestions but he’s not a group person and definitely finds it hard to accept help. I did say we should ring the Prostate helpline. I think I will do that tomorrow.