High Risk localised HT length

User

Posted 23 Aug 2023 at 11:42

I am in a bit of a dilemma as ti when to stop the Zoladex ADT - I had high risk G9 localised (with clear PSMA scan) July 2022 after a failed HIFU 8 months earlier for what had been intermediate risk G7 (3+10%4).

everyone surprised at the jump to G9 (4+10%5) but had Bicalutimide for 8 weeks then Zoladex beginning October - RT moderately hypofractionated (20x3Gy) no pelvic RT due to other conditions (polio muscle and polio related breathing issues) and benefit risk thought to favor avoiding as PSMA clear and PSA <10.

all went well and now since March PSA suppressed so far at 0.01 and testosterone variable between 0.7 and 0.8

my consultant is concerned that the side effects of long term HT with my existing post polio syndrome might destroy or seriously impact my quality of life so suggest I could stop HT now with only a small 10 year outcome effect and as I’m 73 was it worth it.

I know that with my high risk 18-24 months is the latest best guess for best results. If I stop now that is only 10 months adjuvant Zoladex. To be honest I was trying for 18 months. I know I can be stubborn fighting through treatment even if hard as that’s what happened be done all my life with my polio - and yes I can’t exercise due to polio weakened muscles and a wheelchair user - but the issues are complex - and is the weakness and fatigue and mood struggle the HT or my normal polio ageing muscles ?

I am aware that I am unusual but also there a lot of discussion on just how long adjuvant HT is required- seems there is a lot of debate and differences of oncologist opinion even with high risk!

any comments - advice - experience would be really helpful as I’m a nit in a quandary right now

User

Posted 23 Aug 2023 at 12:05

I had high risk PCa at age 53 and was on zoladex for two years. The main benefit is the six months before RT and the six months after RT. Anything beyond that is offering a little benefit, but if it causing other problems it is almost certainly now doing more harm than good.

With me hoping to survive another 30 years I needed the best chance of cure. You need about ten years of remission, if I were you I would come off zoladex now. If you do come off and the cancer returns then you will be between the devil and a hard place.

Dave

User

Posted 23 Aug 2023 at 12:47

I was high risk too. My oncologist said to me it's the total time on HT which matters, not just adjuvant. At the outset, he said 18-36 months. When I got to almost 18 months, I asked again, and he said because my PSA was <0.01 since the RT, he was happy for me to stop anytime I liked. If my PSA had been ≥0.5, he would want the full 36 months. I'm quite a lot younger than you so I'm looking for a longer time in remission, and I wasn't having any problems with the HT I couldn't put up with for a bit longer so I continued to 22 months. I can't comment on the interaction with post-polio effects.

User

Posted 23 Aug 2023 at 12:56

Yes I can see my life expectancy at 73 is an issue to consider. I am minded to tie the next one early september and that will take me to 13 adjuvant and reassess then. As you say if it returns when I stop ther ADT then obviously it means I would have to bite the long term HT options. As I’m still need to work part time that is also something that I need to consider. Thanks for your thoughts/experience

User

Posted 05 Sep 2023 at 07:55

Originally Posted by: Online Community Member

is the weakness and fatigue and mood struggle the HT or my normal polio ageing muscles ?

I would guess that it's the HT. I found that much of the HT experience was not something I was briefed on beforehand and it certainly does effect mood and outlook. On the plus side, when you get out the other side there's a big improvement in QoL, and I'm not talking about testosterone returning, as it hasn't happened for me yet.

What are the particular post polio risks of staying on Zoladex for another 3 to 6 months? If you're willing to do it, it would have some minor gains as you know but that could easily be balanced out by the debilitating side effects of Z, which inevitably cause muscle weakness and often weight gain. Your psa reading couldn't be better.

At 75 I was G9, high risk, psa 11, 3 lymph node mets. After RT/HT I stopped the Zoladex at 21 months. So far, so good, psa still <0.01 though I guess it's still a waiting game for a few years.

Jules

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