Stopping ADT early

User

Posted 14 Apr 2025 at 16:53

Hello All. I posted earlier in the year under the Conversation title Curative Path. I was diagnosed in March last year as Gleason 3+5 T3b with PSA at biopsy of 48. Prostap brought that down to almost nil and following radiotherapy ending mid July it has been undetectable. I have complained bitterly from the start about the unpleasant side effects of the ADT and at a consultation end January the oncologist reiterated that my best chance for prolonging my life was to continue with Arbiraterone for another year and Prostap for another 2 years. For me that was unconscionable. At our meeting end March the oncologist conceded that it was recognised that some men are unable to tolerate the side effects. He did not reiterate the previous mantra and said that if it was him, with similar results and ADT intolerance he would stop the treatment. I immediately stopped taking the Arbiraterone. My next Prostap 3 is in 2 months which I am not intending having. This current one has produced the worst side effects. I am not happy about putting myself through any more. However I am now having concerns about risk of recurrence given I am stopping the HT early. Am I playing Russian Roulette with my health? Are there any definite studies to the effect that 3 years is better than 15 months on ADT? John

User

Posted 14 Apr 2025 at 20:28

The video in his thread is a good place to start.

https://community.prostatecanceruk.org/posts/t31561-Hormone-treatment---do-you-need-it#post306366

In short it is saying that over the last decade radiotherapy has become more precise, so they have been able to up the dose on the cancer, and not do too much damage to the surrounding area. So now the cancer is getting a bigger dose of RT it doesn't need as much HT to knock out the remaining cells (because they were knocked out by the RT). Dr Shultz in the video, suggests oncologists have not really factored in that this means they can reduce the amount of time on HT.

The exact criteria for the trial in the video, I can not remember. Your diagnosis may not match the sample group in the trial, so you can't reliably say your outcome will be comparable to those in the trial. Dr Shultz does point out that 10 more people (out of 750) died in the arm without HT, so HT is effective, but not necessarily effective enough to justify the side effects.

Most people don't find the side effects of HT to be too bad, so for most people the tiny added benefit may be worthwhile. However if you are in the group of people who find the side effects of HT to be quite bad, then there is a very strong argument for stopping early and taking a very slight increase in risk of recurrence.

Edited by member 14 Apr 2025 at 20:29 | Reason: Not specified

Dave

User

Posted 15 Apr 2025 at 14:40

Dave, Derek and Schubert thank you for your replies you are all tremendously informed, encourage and experienced through this miserable disease and devilish ADT. The treatment room nurse said as she was injecting me “I have to apologise for putting you through the menopause but it’s very effective and you have a woman’s sympathy”. It has felt like a double doze the last 3 weeks which seems to have supercharged the adverse effects. I am taking medroxy progesterone supposedly to take the edge off but still having to change my top at least once each night with frequent hot flashes during the day never mind the rest of its unwelcome companions. I am still in full time self employment and will be happy to see the back of HT effects which the oncologist said will last 6-8 months from the time this last one is out of my body. I read that recurrence rate is higher than one would think however as you said Schubert the miracle of modern RT seems to have worked for me and Dave you said what I needed to read about the relative risk. Although the oncologist could not be drawn into comment he seemed confident that the cancer gone. I was to have another consultation on 24 April which has been cancelled and replaced with one on 29 September and I expect 6 monthly thereafter. I guess that’s a bit of good news. My grateful thanks again. Maybe now I will be less hesitant about jumping into other conversations. Incidentally, I was treated at the Lanarkshire Beatson. An absolutely wonderful place with wonderful staff. It was definitely an emotional moment saying thank you on my last day.

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User

Posted 14 Apr 2025 at 20:28

The video in his thread is a good place to start.

https://community.prostatecanceruk.org/posts/t31561-Hormone-treatment---do-you-need-it#post306366

Edited by member 14 Apr 2025 at 20:29 | Reason: Not specified

Dave

User

Posted 14 Apr 2025 at 20:34

Hi John,

I stopped after 2 years (was suppose to be on it for 3) with my Oncologists consent. I didn’t have Arbiraterone, but for me Prostap has wrecked my body, and a year after my last injection I am still suffering. The worst is joint pain and that was my main reason for stopping. I too found the effects cumulative to the extent where I struggled to out a chair and getting up from the floor was nearby impossible. Before I started on this stuff I was fit and active, and I tried as hard as possible to keep that way and keep my muscle strength during treatment. I know think permanent damage has been done to my hips.

i read on here people saying that there had been research showing that there was not much point on staying on ADT more than 2 years. I also read that it’s important to be on ADT for a period after RT. That helped me with my decision.

if my Oncolgist had not given his consent, I’m not sure what I would have done, but I am scared stiff that if this hasn’t done the job I may end up in this awful drug for life😩 There comes a point where QOL may need to take precedence over length of life. If it were to happen to me I would seriously consider an orchidectomy as I’m convinced it’s the effect of the drug rather than lack of testosterone that causes the problems.

Some people have an easy time on ADT, others like you and me REALLY suffer. I think the attitude that ‘well put you on this for 3 years just in case’ is wrong. There is also little or NO support whilst on it, I feel you are just left to suck it up.

i wish you luck with your decision whatever it is, if it’s any consolation I started to feel better as soon as the last injection was out of my system, and there has been a gradual improvement. My latest testosterone test showed it’s now 6.5 and I’m waiting on the results of my latest PSA test…it’s a very anxious time especially now that my testosterone is returning.

Derek

User

Posted 15 Apr 2025 at 07:17

JohnScot just to add another point to the excellent comments above. How rapidly your PSA came down when responding to the initial HT is a good indicator of the level of risk you face. If your PSA came down quickly, that is a good response to HT and I think yours did. But for people where it doesn't I begin to suspect there could be an early element of castrate resistance developing. My OH stopped Decapeptyl twice during his treatment because of side effects. His PSA went from an initial 290/ 264 only down to 23 after four months on Decapeptyl before radiotherapy. After his second pause on HT after radiotherapy he quite quickly became castrate resistant and is now on lifelong HT. Keep a very close eye on PSA and your response to HT. Good luck with your decision.

User

Posted 15 Apr 2025 at 08:54

As you are in your 70s I would argue QOL trumps Length and should be a factor in your decision.

If it comes back you can always go back on the HT.

If it comes back and you are on HT and your life is miserable then you really have a problem.

Life is for living.

User

Posted 15 Apr 2025 at 14:40

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