Stopping HT early?

Hi  Coltrane.

I have read your profile but a couple of questions, can't see any PSA figures, was your Gleeson 7 or ,9?

I presume cancer contained in the gland?

I don't think anyone really knows if it should be  30 or 36 months but does depend on stats.

If it was me and I was getting fed up with side effects I would probably stop but please remember that's just my opinion.

But I would look at all the stats including current PSA figures.

Also see what others say

Best wishes 

Steve 

My understanding is that the general guideline is "the more aggressive the cancer the longer the duration".

Given that my own treatment, as a Gleason 9 diagnosis is also for 36 months, I would suspect that yours is similar.

Reading the NICE guidelines, and other papers, I will hang on for the full period. If it is suggested I have less I will be concerned.

Hello Coltrane 

I am also a Gleason 9 and told 36 months - I am with Steve (mstev2 ) here - it's an aggressive cancer, the oncologist said 36 months - I would stick with the 36 months (if you read my profile I have had a biochemical relapse and am back on another 9 months HT).

You mention 2 side effects in your profile:

* Hot Flushes - have you tried Sage Tablets ? - they cured mine within a fortnight.

* Weight Gain - I put on 3.5 stone during HT - my oncologist has put me on Ozempic the weight loss drug -it costs nothing to ask!

I hope this helps. Happy to answer any questions.

Best wishes - Brian.

Hi Brian

yes, tried Sage and now on medroxyprogesterone and that doesn’t make that much difference. The flushes are worse at night - i still wake up several times a night. I’ve put on 2 stone and this has effected my attempts at resistance and mobility training. The extra weight puts pressure on my knees. I understand what you say and I sorry that you’ve had a relapse.  

Hello Coltrane

my husband was diagnosed with in Autumn 2022 T3a No M0 Gleason 4+3 he was told he would need to have HT for 3 years, then 6 months, then 2 years! He also had 20 factions of RT. He aged 10 years in the first 3 months of HT and by 18 months and with other (non prostate cancer) health problems he reached rock bottom and told the oncologist so. The HT was stopped immediately and we were told to expect a rise at the next PSA test. It went from 0.02 to 0.2 and has been in the 0.2 range since with 2.0 being the time to start worrying, we’re told. It took a long while for the affects of the HT - tiredness and brain fog mainly- to wear of 

I guess it’s a risk to finish early but for us, it was the oncologist’s call and we were only too happy to agree enough was enough!

I do think there seems to be little evidence for the optimum length of time to be on ht -,especially when you weigh up the side effects and the known risks of taking it for a long time.

My best advice is to try to talk to your oncologist and, if not possible, with your GP - asking him/ her to clarify your situation with oncology for you. 

best of luck and hth

From my experience I am tempted to say that there does seem to be a general reduction in the length of HT required. There are a number of studies (pretty reputable !) reported on line that also seem to think the same way. There will always be exceptions though !!

I was PSA 16.9.  T2/T3a N0 MX.  Gleason 4+5    at diagnosis. Initial plan: 20 X RT, 3 yrs HT. The 3 years was quickly reduced to 2½ then 2 yrs.  For various reasons I enquired about ending the HT (Prostap) after 18 months, the Oncologist and the Urologists conferred and agreed to me doing this, saying it was "minimal risk".  I had a PSA test done at the 18 month mark (0.01 - as a base line), I am booked  in for the next after 6 months. 

I still have to option of restarting the RT if the "risk" looks a bit more than "minimal". 

Thank you for sharing your experience, Moonraker. At the time I could find little evidence to support longer or shorter times for HT for intermediate to high risk ( my husband’s stated diagnosis).  I could find it for lower and higher risk. We both found the HT brutal - he because of the extreme side effects and me because I hated seeing his struggles. I know that you men all react differently to the ht - some getting on better than others. I would have encouraged my husband to persevere if that had been the medical advice but I am not sure he would have been able to given how poorly he was at the time. Some 18 months since stopping the ht he is much, much better and living a full, active life again at age 78. As I said, his PSA has remained stable.

My fear is that if relapse and the need to resume the ht. if this happened I would encourage him to ask about other formulations off ht which act in a slightly different way. ( can’t remember the drug name but there has been recent comments here about it). He was on decapepyl.

I hope your own PSA journey remains stable, too.

In my area I’ve found it impossible to contact the Oncologist.  The best I can get to is a Urology Nurse and i merely told that it’s my risk if I stop early. I don’t think there is any evidence that 36 months is better than 30 months.  The Oncologist told about side effects before my treatment started but I wasn’t really prepared for it. What i do wish he had told me was the importance of mobility and resistance training. Sadly, he didn’t and I only discovered its importance by reading posts on here and some Facebook sites.

also a 9 locally  advanced..i just had my 3rd 3 monthly..id stick with 36 months..tbh.

My husband was diagnosed in April 23 and a timeframe was never discussed. He remains on 3 monthly injections plus daily daralutamide