Hormone treatment - do you need it? - Side effects - Prostate Cancer UK Online Community

User

Posted 03 Apr 2025 at 14:41

Zoladex injections (ADT) can be debilitating and cause long-term damage.

Make sure your oncologist is not overprescribing ADT. Watch this video from the US Prostate Cancer Institute and press your oncologist hard on whether to start ADT and for how long 👇

https://youtu.be/cyY0nHXvzGc?si=bkUJ3WW5ZUpM3FtW

User

Posted 06 Apr 2025 at 15:04

Andy,

You are correct. The UK oncologists optimise to reduce risk of prostate cancer. They do not optimise overall survival.

If a patient dies of a cardiac arrest that does not tally on their death statistics, even though the patient's heart has been crippled by lack of testosterone.

And quality of life? I was not asked once about it by oncology. I could not walk properly because of ADT and I had a deep vein thrombosis on Xmas eve. Not oncologist fault us it? Nothing to do with cancer...

Finally, mental state. I had deep anhedonia on ADT. It stopped in the week which was my wash-out day (13 weeks after last Zoladex). That week my blood pressure returned to normal along with resting heart rate. I started going to the gym.

Suicide rates are 4 x normal for age cohorts, and yet the research papers link this to cancer, or the shock of diagnosis. IT IS ADT THAT CAUSES THE ANHEDONIA.

I agree that ADT is needed to put a 'emergency handbrake' on before radiotherapy for the reasons you stated. Fair enough. But that handbrake needs to be taken off immediately afterwards. Testosterone Replacement Therapy (TRT) straight away with intensive PSA monitoring (monthly).

My oncologist wanted me on ADT for 36 months. This would have caused me even more damage to my heart and lower body (I still cannot run).

User

Posted 06 Apr 2025 at 17:33

I have seen some of the debilitating side effects of HT on men and have done all I could to avoid it in the long term. I was on Zoladex for 6 months and then a further 2 months pretty much concurrent with my RT. Subsequently, as my PSA began to increase I was offered HT but plumped for HIFU instead. Further on my PSA began to rise again and I was offered HT again but declined. I argued my case for a further session of HIFU and am now in remission. I have now run out of radical treatment so should cancer present itself I will have to consider whether what I have avoided since 2008 and have HT or another systemic treatment such as Chemo. I appreciate that men find themselves in different situations and some might prefer HT to further radial treatment but the effects of 8 months of HT was enough for me to try more radical treatment than opt for extended HT and so far it has worked for me.

Barry

User

Posted 06 Apr 2025 at 18:54

I'd just say that my treatment for locally advanced t3b PCa was 3yrs ADT (Zoladex plus 2yrs of abiraterone, enzalutimide, prednisolone on trial) with 32 sessions of RT. Yes I had most of the side effects of ADT but I was comfortable with the effects looking forward to the treatment doing its job, which it seems to have done. Treatment finished summer 2018 and PSA stayed at or below Nadir of 0.5 and although it took couple of years the effects disappeared. Admittedly my view is affected by, up to now the treatment was successful, I'd have same again.

Peter

User

Posted 09 Apr 2025 at 18:51

I wanted to wait until I got the results of my latest testosterone test before replying to this post, but I can empathise with everyone of you who has had a tough time on ADT. For the minority(from what my experience is) who don’t suffer debilitating side effects whilst on ADT, I am pleased for you but I wish I understood why some men seem to get off really lightly and others (including myself) have their QOL seriously impacted by ADT.

What I can’t understand is why it’s regarded as normal to be on ADT for 3 years, and if you are not proactive in your treatment, you will be left to suffer…and suffer…and suffer for 3 years. I suffered for 2 years to the point where it was seriously affecting my mobility, but when I questioned whether I could stop early, my Onco was happy for me to stop. if I had stayed on it for another year, I reckon I could have been in a wheelchair.

So, why is this not reviewed very 3 months? I have no idea 🤷🏼‍♂️ I was lucky in that my CNS was caring and when I questioned whether I needed to stay on it for any longer, she chased the Onco for an answer, but I wonder how many men are just left to rot away.

Don’t get me wrong, I am eternally grateful to the NHS and what they have done in hopefully curing my PCa, and also what Prostap has done in helping me achieve this…but I felt abandoned whilst on Prostap with little support. It’s almost as though you just have to suck it up as it’s part of your treatment because it’s ‘helping’ you. I tried everything, I was active, I went to the gym, walked, cycled, took supplements, had acupuncture, went swimming, ate reasonably healthily. I really don’t know how I would have got through this without sertraline and the support from Maggies.

I was reflecting with my wife on the flight home from Fuerteventura about the instant effect it had on my mental health when I started ADT. I suffered dreadful anxiety, part of which was anhedonia. I distinctly remember the turning point for me was when I went with my grandsons to Arran for the day…it should have been such a joyous experience but was one of the worst days of my life, I just felt SO miserable…and trying to put on an act for my grandsons was just so, so hard. That was the turning point at which I spoke to my GP and was prescribed sertraline.

My point to all this is? please men if you’re suffering, don’t stay on ADT any longer than absolutely necessary, be proactive in your treatment and find out if you can stop early if things are going to plan. Why go on injecting yourself with this drug when all it’s doing is destroying your body.

I have no idea what longterm damage it’s done to me, but my hips are still giving me problems and I’m not sure whether I will ever be able to ski again….this was a my goal. I DO know that I started to feel better very soon after Independence Day and there’s been a gradual improvement ever since.

I wish everyone on ADT all the best and hope your recovery goes well!

Derek

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User

Posted 05 Apr 2025 at 11:27

That is an interesting video. The latest best practice for low/intermediate risk cancer is SABR and no HT, this is pretty much in line with Dr Schultz's opinion in this video.

Dave

User

Posted 06 Apr 2025 at 11:28

So, he's talking about 6 months on hormone therapy.

I'm pretty sure we have run trials in the UK which show there's no survival benefit of 6 months hormone therapy. There are other reasons to use hormone therapy though, e.g. to shrink the prostate before radiotherapy which enables the use of narrower beams with less collateral damage (radiotherapy side effects), and also happens to reduce any symptoms of enlarged prostate (which is less easy to treat after radiotherapy). Hormone therapy for shrinking the prostate alone before radiotherapy would be Bicalutamide, which has significantly fewer side effects anyway.

The other thing I would say is I tend to see a quite different attitude in UK and US patients to any choices which compromise between immediate side effects, versus cure/long term survival. In the UK, there's more of a tendency to want to hit it hard and cure first time (when that's an option) and put up with short term pain for long term gain. In the US, there's perhaps more worry about immediate QoL than there is a wish to hit it hard to cure first time, and a feeling that we'll deal with whatever happens later when it happens. There is probably more opportunity for repeatedly retreating with curative intent if you have good employer health insurance in the US than in most other places.

Edited by member 06 Apr 2025 at 11:40 | Reason: Not specified

User

Posted 06 Apr 2025 at 15:04

Andy,

You are correct. The UK oncologists optimise to reduce risk of prostate cancer. They do not optimise overall survival.

If a patient dies of a cardiac arrest that does not tally on their death statistics, even though the patient's heart has been crippled by lack of testosterone.

Suicide rates are 4 x normal for age cohorts, and yet the research papers link this to cancer, or the shock of diagnosis. IT IS ADT THAT CAUSES THE ANHEDONIA.

My oncologist wanted me on ADT for 36 months. This would have caused me even more damage to my heart and lower body (I still cannot run).

User

Posted 06 Apr 2025 at 17:33

Barry

User

Posted 06 Apr 2025 at 18:28

Originally Posted by: Online Community Member

You are correct. The UK oncologists optimise to reduce risk of prostate cancer. They do not optimise overall survival.

It's the patients I was referring to, rather than the clinicians.

Clinicians in the US have massively different incentives - they only get paid if you use them to treat you. Mark Emberton (UCLH) did a webinar on UK versus US treatments where he highlighted this difference. When he's talking through treatment options with a patient, he gets paid exactly the same whether he treats the patient or suggests the patient gets a different treatment by someone else. This is massively different from the US.

But I don't agree with your point above either. Surgeons have a tendency to consider just the cancer, but oncologists tend to be much more holistic and consider the whole patient including their specific views on life and attitude to risk, etc. The risks of ADT are well understood, at least by better oncologists. (Obviously there are exceptions both ways.)

No treatment is risk-free, but most people do manage time-limited HT OK, although it's the ones who don't who tend to write about it. If you're on life-long HT, then yes it can be the HT which kills you, but on average, nowhere near as soon as untreated prostate cancer does. These considerations are weighed up in each case.

User

Posted 06 Apr 2025 at 18:54

Peter

User

Posted 06 Apr 2025 at 20:42

I was T3a, PSA 58, and considered high risk. I was to do 18-36 months ADT. I manged the ADT fine. I didn't get hot flushes, and I did a lot of cycling. I was a cyclist beforehand, but did a lot during treatment and ADT. This minimised muscle loss and I didn't get fatigue. At 18 months, I was told I could stop because my PSA was undetectable, but I decided to go on to 22 months in case it gave me an extra 1% or 2% chance of a cure. I'm now 5 years after treatment and have no side effects from the ADT.

Peter, I was aware of that trial. Using Abiraterone or Enzalutamide was beneficial for high risk patients on a curative treatment path, although using both didn't add any more benefit. The government has recently refused to make Abiraterone in the standard of care in this case in England, although it is now in Scotland, Wales, and many other countries. Some people are paying for it themselves.

Edited by member 06 Apr 2025 at 20:47 | Reason: Not specified

User

Posted 06 Apr 2025 at 21:18

I was put on Zoladex for three years January 2020. I curse myself for not doing more research and not asking more questions. I just thought "doctor knows best" and went with it. Had my last implant January 2023. For the first year after coming off my testosterone remained undetectable. Then in May last year it was 1.9 nmol/l, in November it was 4.7 nmol/l. My next blood tests are next week. I still have all the side effects of ADT five years on. The return of some T has caused a slight return of libido. Sadly that's combined with total ED.

I have the anhedonia which is a huge struggle after five years. I also worry about my cardiac health, not least because I've been unable to shed the body fat I put on while on ADT. My oncologist refuses to even consider TRT.

I would strongly advise anyone to ask questions of their oncologist before accepting any long term ADT.

User

Posted 09 Apr 2025 at 18:51

I wish everyone on ADT all the best and hope your recovery goes well!

Derek

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