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Hormone therapy,length of treatment

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User
Posted 01 Aug 2026 at 17:13

Hi, first time on any forum, on any subject. Here goes.

I'm 69 and was diagnosed last year with stage 3, Gleason score 9 and cancer spread to local lymph nodes. I'm on a trial (PEARLS), the main aspect being radiotherapy to a wider area.

I was discharged from urology to oncology around early Oct. I had no further opportunity to ask questions and, probably like, most people receiving such bad news, I was in no state to think clearly at this appointment. I was told to immediately start taking pills to stop the androgen spike and to arrange my first hormone injection with the GP asap. I was not given any options for treatment, or even time to think about it and had no medical path to turn to for advice during the intervening period. I felt that I was railroaded with the haste.

One thing that I was told was that the hormone therapy would be from 6 month to 3 years. Being an optimist (or maybe dreamer) I latched on to the 6 months figure. 

I had my radiotherapy earlier this year and am continuing with the injections. The hormone treatment is a big cause for concern: I'm worried about the side effects, in particular the risk of cardio-vascular disease and osteoporosis, and the total loss of libido. I am getting some side effects but the fhe former is especially worrying as there is a family history.

Because of these concerns I thought to question the oncologist about the length of the hormone treatment (which I’ve been told has to be 3 years). That didn't go down well, espacially as I voiced a desire for a 2nd opinion in the hope that another oncologist might suggest something better.

So what's my point? I was wondering if anyone out there with a similar condition has been offered a different treatment plan, either within the NHS or outside, and how has it gone?

Thanks, in anticipation.

User
Posted 03 Aug 2026 at 10:52

Originally Posted by: Online Community Member
I know there's no simple answer. But it's down to accepting the risks v quality of life. If pressing on with the full 3 years of ADT means that it's only likely to extend my life by a short period vs shortening the treatment but then improving quality of life, then I know what choice I'd make. But I'm not getting that choice - they're fixated with just extending life as long as possible.

Hello again, mate.

There is research showing that for lowish grade cancer that is prostate contained, that the outcomes for those on ADT after 36 months is virtually the same as ADT at 18 months.

Here's a link to one of the conversations on it.

https://community.prostatecanceruk.org/posts/t30506-Duration-of-ADT---18-or-36-months

Your diagnosis of Gleason 9 and local lymph involvement, obviously doesn't fall into this category.

I haven't searched for any evidence on the affect of reducing ADT times on those with your diagnosis. I suspect they'll be none, as it is too specific.

I'm not medically trained but I would have thought that ultimately the choice is yours. We've had several men, that due to quality of life issues, have decided to deviate from medical opinion.

I wish you the best of luck, whatever you decide to do.

Edited by member 03 Aug 2026 at 11:01  | Reason: Add link

User
Posted 04 Aug 2026 at 08:08

Hi Antoinette

I have been on Zoladex for 10 months and Darolutamide for 6.  There has definitely been shrinkage! I am also awaiting a prescription for a pump.

My body hair is just all falling off now, whilst what little I had on my head is starting to come back after falling out due to chemo. It’s strange being “smooth “ after a lifetime of being hairy!!!

I am on HT for life, so that is my lot but I get to see the grandkids (8&nearly 5) grow up - I am their only grandad as we lost their other one to cancer nearly eight years age - so this gives me purpose and strength!

I am so glad that your husband seems to have come out of RT so well, I am expecting to start mine in late autumn ( next oncologist meeting in 2 weeks).  It seems the RT effects can be as variable as the HT effects - it just goes to show how we are all so different on the micro scale.

Have a lovely day with the grandkids, and enjoy your tea ( just taken my wife hers as well!!)

 

Edited by member 04 Aug 2026 at 08:18  | Reason: Additional text

Best wishes - stay positive

CeePee

User
Posted 04 Aug 2026 at 09:02

Hi CeePee

He is on Apalutamide which did add to the sweating and ED a bit. 

There is no research into why some have worse side effects than others. 

Yes there is one worse side effect of PC just not being here. 

I also checked and Darolutamide is very effective and comes with less side effects than Apalutamide.  

Husband is an ex teacher and very actively looks after them. They do have a great relationship with him. They parents split up last year. They adjusted well but my husband is a dad substitute on holiday etc so I was worried about his energy levels. He is 74 but he seems ok so far. 

Hope you have many more happy times with yours 

User
Posted 02 Aug 2026 at 05:58

Hello, mate. 

Welcome to the forum. 

I've just done a little Internet research on this trial, and it seems that the period for continued hormone treatment is more likely to be between 18 months and 3 years.  To be on it only 6 months, seems very optimistic.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9550847/

I had surgery, so have no personal experience of prolonged hormone treatment. However, a lot of the lads on here have and I'm sure that some will be along to make comment. I know that many have had unpleasant side effects.

I suppose, you can only be safely advised by those monitoring your trial treatment and it will come down to trying to strike the right balance between the effectiveness of the hormone treatment and the adverse side effects it causes or may cause.

Best of luck.👍

User
Posted 02 Aug 2026 at 17:37

Hi our experience was very similar to yours. Husband is G8.

He's been on Decapeptyl for 9 months and Apalutamide for 3 to 4 months.

Yes ED is a side effect. But not the utter despair you might think. No one mentions it. It's the elephant in the room! I feel I'd like to start a campaign .if you'd like me to go in more length about how he's  mitigating this side effect message me. Our GP is most helpful. 

Hot flushes... yes but not awful. A few seconds, worse in extreme heat. But not too bad at all. 

Anything else.   Not really. 

He's doing well. So far. On Vitamin D to absorb more calcium. He's bought an exercise bench and walks a few miles most days. 

We've altered our diet. No red meat No processed meat. And I've started making my own bread. We've been on 2 holidays.  1 more in late August, 1 to Italy in October. He finished 20 sessions of RT on July 26 . 

User
Posted 02 Aug 2026 at 18:30

Hi Antoinette

That sounds absolutely fantastic, great team work!!! Good diet, exercise is a must do...

Best wishes - stay positive

CeePee

User
Posted 03 Aug 2026 at 10:26

Hi yes but the Radiotherapy oncologist we saw did say QOL was important. 

I can understand your fears completely.

Someone said to me once she thought a lot of medical people were a bit on the lacking in empathy as all scientists and all had experience of dissecting dead bodies. They aren't usually very imaginative.

On the other I feel your fears are at the extreme end. Modern diets are more informed, and there is a lot of mitigation you can do with exercise. andOurr sex life has not ended by any means. No help from the Oncoligy team whatsoever.. I thought  everyone got told they were being taken to castration level??

The nurse dismissed my distress with "well he's got the Radiotherapy too you know. You can always have a cuddle"  Obvioysly her sex life isn't quite on the same level as mine! 

Well we're both a bit stronger than this depressive nonsense.  If you do have anxieties I'm happy to message more. 

User
Posted 03 Aug 2026 at 18:46
Praying for snow- you asked about testosterone returning after 12 months after ADT. I cant remember exactly how long it toom but it was at least 1 year and it returnec suddenly. Someone who posted a lot on here a while ago and well respected was Lynn Eyre who, with others, suggested it takes as long as you were on ADT to recover. For me that'd be 3 yrs and probably wouldnt be too far off for all effects to disappear but i'm sure testosterone wasnt anywhere near 3yrs.

As far as effects to be expected, I think I found what to expect from the likes of this site, not just the forum, not from oncologist/nurse. There may have been a leaflet/booklet given to me.

Peter

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User
Posted 02 Aug 2026 at 05:58

Hello, mate. 

Welcome to the forum. 

I've just done a little Internet research on this trial, and it seems that the period for continued hormone treatment is more likely to be between 18 months and 3 years.  To be on it only 6 months, seems very optimistic.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9550847/

I had surgery, so have no personal experience of prolonged hormone treatment. However, a lot of the lads on here have and I'm sure that some will be along to make comment. I know that many have had unpleasant side effects.

I suppose, you can only be safely advised by those monitoring your trial treatment and it will come down to trying to strike the right balance between the effectiveness of the hormone treatment and the adverse side effects it causes or may cause.

Best of luck.👍

User
Posted 02 Aug 2026 at 11:13

Hi

I went down the hormone route immediately, then Chemo and now probably onto radiotherapy...

The hormone therapy messes with your body and mind all around, but is bearable I believe - I have to think that way as I shall be on it for life..

I started last October 25 with Zoladex 3 monthly injections and then onto Darolutamide before starting chemo.

Libido is absolute zero, I have been to the Andrology Clinic and am awaiting the requisite paperwork/prescription for a pump for rehabilitation purposes.

Loss of energy, fatigue is par for the course I am afraid together with brain fog - but this is manageable especially using phone for notes/reminders/alarms to take meds etc.

I am now really losing my body hair after about 9 months, it seems to be just falling off.  What little I had on my head is now growing back after falling out during chemo!

Emotionally it can be a bit of a rollercoaster - I am generally a very positive person but I do get down and a bit tearful at times (about the slightest saddest thing..)

I do not have the cardio problems but am on high blood pressure and cholesterol meds anyway - have been for years.  My recent bloods came back with raised levels - but I believe these to be a result of the hormone meds.  I am also now pre-diabetic again a little to do with the meds but I was borderline anyway before all this kicked in.

I do try to keep up an exercise regime of walking, weights and resistance to fight the fatigue and it does really work.  Physical weight gain is another factor but I am on a support programme around lifestyle and diet which is leading to weight loss and helping with the HbA1c levels.

I do hope that things will work out for you and you will settle on the pathway that suits you best.

 

Best wishes - stay positive

CeePee

User
Posted 02 Aug 2026 at 11:13
and don't forget to click on our names or avatar roundals to see out profiles!

Best wishes - stay positive

CeePee

User
Posted 02 Aug 2026 at 13:28

Thanks Cee Pee. Reading your story makes me think I should be grateful - I'm sorry to read that you're on hormone therapy for the rest of your life. That's my worst nighmare scenario and the oncologist occasionally brings out that threat to stop me winging. I don't know how you cope with it - it wouldn't be easy for me if I have to go down that route.

best wishes

User
Posted 02 Aug 2026 at 14:36

I am not sure - but it does seem to be easier - both to accept and to cope with - as time goes on. I suppose that you/the body adapts and there becomes a new normal .  My view is that at least this way I can beat the expiry date on my new credit card!!!

Best wishes - stay positive

CeePee

User
Posted 02 Aug 2026 at 17:37

Hi our experience was very similar to yours. Husband is G8.

He's been on Decapeptyl for 9 months and Apalutamide for 3 to 4 months.

Yes ED is a side effect. But not the utter despair you might think. No one mentions it. It's the elephant in the room! I feel I'd like to start a campaign .if you'd like me to go in more length about how he's  mitigating this side effect message me. Our GP is most helpful. 

Hot flushes... yes but not awful. A few seconds, worse in extreme heat. But not too bad at all. 

Anything else.   Not really. 

He's doing well. So far. On Vitamin D to absorb more calcium. He's bought an exercise bench and walks a few miles most days. 

We've altered our diet. No red meat No processed meat. And I've started making my own bread. We've been on 2 holidays.  1 more in late August, 1 to Italy in October. He finished 20 sessions of RT on July 26 . 

User
Posted 02 Aug 2026 at 18:30

Hi Antoinette

That sounds absolutely fantastic, great team work!!! Good diet, exercise is a must do...

Best wishes - stay positive

CeePee

User
Posted 02 Aug 2026 at 19:00
I was diagnosed end of 2015 with T3b Gleason 8 (upped to 9 after TURP to ease urine flow [section of prostate cut away]) slight spread to seminal vesicles, aged 59 at the time.

My treatment was 3 yrs ADT on Zoladex with 32 sessions of RT to prostate and pelvic region. I was also on trial which added 2 yrs of abiraterone,enzalutimide,prednisolone.

I suffered from many of the expected side effects but they were generally expected and accepted relying that the treatment will do the job and effects will fade once treatment finished.

I was fairly fit prior to all this, no BP, cholesterol, weight etc etc issues. I started on 3 lots ofBP tablets and statins soon after treatment started, however I cant be sure natural aging would have come into play.

I finished treatment summer 2018, my PSA remains 0.5 or under. Effects gone although still a bit weighty for my liking but thats rather down to laziness!

I cannot complain about treatment/effects etc but maybe thanks to it doing what it was supposed to.

Peter

User
Posted 03 Aug 2026 at 07:11

Hi Peter

Thanks for sharing - it's good to hear a 'success' story.

Sitting here at less than 1 year into ADT, facing 2 more years seems almost like a life sentence - well a long time. I've been told that it could be another year or longer before my testosterone returns to normal. Is that your experience?

You mention that the side-effects were to be expected. I suppose that's my problem - I was given little information from urology (in fact I never saw the consultant, except when she did my 2nd biopsy, and she wasn't particularly approachable then) and the oncologist assumed that everything had been explained to me, including how serious my cancer is. All my information about the treatment and side-effects had initially been obtained from the internet.

After 9 months ADT the oncologist was a bit put out with my questions about the treatment plan. We had a 'bust-up' on my last appointment. My GP, who's very on-side with me, had written to complain (he also wrote a stronger letter to the urologist). The oncologist brought in a manager (admin) as backup (presumably to cover her 6). Suffice it to say that it was a torrid meeting and instead of the 7.5 minutes allocated it lasted over an hour - I felt sorry for those scheduled to come after me. 

I'm still not content with the treatment plan. All I keep getting in the party-line - they're ever so afraid to deviate from that, so I don't know if I'm getting the best option or just the standard. Hence my origial post here - I wantto know if anyone has had a different journey. It might be that my treatment is the best on offer, but I'd like to know - I suspect it's not given the information I've picked up from the internet.

User
Posted 03 Aug 2026 at 07:28

Hi 

I also felt, although I knew his treatment was the best option, ADT and RT the delivery was appalling. 

To sit with your husband you adore and respect and be told well we take you to castration level is quite shocking. And frankly insensitive and not totally as black and white as it sounded. 

His 'cancer nurse' was even worse. She practically laughed when I said sex was still very important to both of us. 

Together after 4 months we wrote an email to PALs and this brought about an instant effect. It was escalated by PALS to complaints. 

There is talk online of best time for ADT possibly being adjusted.

 

I'd say try not to focus on this figure of 3 years but more on how you actually feel. What is it you'd like to improve on? 

If you don't think this is best line, what do you think is? 

The aim is possibly get rid of the cancer but next best thing is hold in check to lowest level for as long as possible.  10 years + 

 

User
Posted 03 Aug 2026 at 10:11

Hi Antoinette

That's an awful thing to say to anyone and to laugh is just appalling. No wonder you complained. 

My niece is an oncologist (breast) and she told me quite recently that the NHS just never dismisses staff unless it's an extreme case (such as the baby killer case recently). Her comment was that they either move them to another role or promote them!

I wholeheartedly agree with your view on sex life. They just don't seem to think it's an important issue, especially as we're older. It's kind of "well, we're saving your life, it's a small price to pay, so don't complain".

The truth is (for me anyway) that it has to be a balance. I don't want to live my life not being able to enjoy life's pleasures (not just sex). If the treatment results in osteopirosis or heart disease then it'll curtail the sports I currently enjoy. I know from past experience that if I have to stop sports then it'll affect my mental health.

The medics just don't seem to get this. Even when I explained my deep fear of heart disease resulted from being alone with my father when he had a massive heart attack (I was only 12). He died a horrible, painful death - I experienced PTSD for the majority of my life and have only recently had treatment for this.

I know there's no simple answer. But it's down to accepting the risks v quality of life. If pressing on with the full 3 years of ADT means that it's only likely to extend my life by a short period vs shortening the treatment but then improving quality of life, then I know what choice I'd make. But I'm not getting that choice - they're fixated with just extending life as long as possible.

User
Posted 03 Aug 2026 at 10:26

Hi yes but the Radiotherapy oncologist we saw did say QOL was important. 

I can understand your fears completely.

Someone said to me once she thought a lot of medical people were a bit on the lacking in empathy as all scientists and all had experience of dissecting dead bodies. They aren't usually very imaginative.

On the other I feel your fears are at the extreme end. Modern diets are more informed, and there is a lot of mitigation you can do with exercise. andOurr sex life has not ended by any means. No help from the Oncoligy team whatsoever.. I thought  everyone got told they were being taken to castration level??

The nurse dismissed my distress with "well he's got the Radiotherapy too you know. You can always have a cuddle"  Obvioysly her sex life isn't quite on the same level as mine! 

Well we're both a bit stronger than this depressive nonsense.  If you do have anxieties I'm happy to message more. 

User
Posted 03 Aug 2026 at 10:52

Originally Posted by: Online Community Member
I know there's no simple answer. But it's down to accepting the risks v quality of life. If pressing on with the full 3 years of ADT means that it's only likely to extend my life by a short period vs shortening the treatment but then improving quality of life, then I know what choice I'd make. But I'm not getting that choice - they're fixated with just extending life as long as possible.

Hello again, mate.

There is research showing that for lowish grade cancer that is prostate contained, that the outcomes for those on ADT after 36 months is virtually the same as ADT at 18 months.

Here's a link to one of the conversations on it.

https://community.prostatecanceruk.org/posts/t30506-Duration-of-ADT---18-or-36-months

Your diagnosis of Gleason 9 and local lymph involvement, obviously doesn't fall into this category.

I haven't searched for any evidence on the affect of reducing ADT times on those with your diagnosis. I suspect they'll be none, as it is too specific.

I'm not medically trained but I would have thought that ultimately the choice is yours. We've had several men, that due to quality of life issues, have decided to deviate from medical opinion.

I wish you the best of luck, whatever you decide to do.

Edited by member 03 Aug 2026 at 11:01  | Reason: Add link

User
Posted 03 Aug 2026 at 16:24

Hello

Indeed the standard treatment for metastatic prostate cancer is RT and HT.    

I have been on Decapeptyl (ADT) and enzalutamide (ARI) for about a year and I suspect the Decapeptyl has ruined my life (energy wise).  I had 177Lu PSMA therapy in Germany and the professor tells me to stop the Decapeptyl (it will shrivel your testicles) and just rely on the enzalutamide.  I am in a good state (psa < 0.01 ng/mL and clear PET scan); I will see my oncologist(france)) in 10 days and tell her that I want to stop the Decapeptyl, I hope that she will understand.  

Do you take an ARI? If not - maybe you can try suggesting this option?

Keep strong - Keep posting

Crispin

User
Posted 03 Aug 2026 at 18:46
Praying for snow- you asked about testosterone returning after 12 months after ADT. I cant remember exactly how long it toom but it was at least 1 year and it returnec suddenly. Someone who posted a lot on here a while ago and well respected was Lynn Eyre who, with others, suggested it takes as long as you were on ADT to recover. For me that'd be 3 yrs and probably wouldnt be too far off for all effects to disappear but i'm sure testosterone wasnt anywhere near 3yrs.

As far as effects to be expected, I think I found what to expect from the likes of this site, not just the forum, not from oncologist/nurse. There may have been a leaflet/booklet given to me.

Peter

User
Posted 04 Aug 2026 at 07:23

Hi Crispin

Thanks for sharing.

Interesting to hear about your treatment plan and your German doctor's comment on Decapeptyl shrinking your testicles. I'm on Leuprorelin and my testicles have shrunk to the size of small grapes - I'm surprised my voice hasn't changed to match :)

I haven't heard of your medication. I was initially on an injection of Leuprorelin that lasted 1 month, it was stepped up after that to a 3-monthly injection. I had a bad reaction to the 3-monthly - I had serious insomnia and had to beg the GP for something to help and eventually got Darodorexant pills to help (still taking them). Also, Leuprorelin has been changed back to monthly. The sleeping problems have not quite stopped, but it's much better - not sure which was the main factor in that (maybe both).

On my last oncology appointment I talked her into giving me Relugolix pills instead of Leuprorelin. The pills are reputedly a bit kinder on the heart - I got that from the Prostate Cancer UK nurse (can't praise this service enough). Not yet started them as I'm mid-point with the injection. 

Thanks again

 

User
Posted 04 Aug 2026 at 07:56

Hi it is most odd how different men react to different treatments.  Husband has been on Decapeptyl for 9 months. He has had his 2nd 6 monthly injection. I did read it has a bit more gentler effect and recovery of testosterone is slightly quicker. 

His testicles have definitely not shrunk to grapes. His GP agreed to Sildenafil and daily Tadafil. He uses a pump every two days We are coping very well. Things are not spontaneous. He schedules it, jokingly every Saturday night. But RT moved that to Sunday as he had Monday and Tuesday off.   

 He's just making a cup of tea while I'm in bed. He's walking a neighbours dog at 8.30. Then we're entertaining our lively granddaughters 8 and 5 till 6pm. His energy levels are about 90% what they were, but he finished RT 9 days ago. He is getting up more in the night too. 

He has been sweating more but the weather here in the SE has been extreme 32° yesterday. 

User
Posted 04 Aug 2026 at 08:08

Hi Antoinette

I have been on Zoladex for 10 months and Darolutamide for 6.  There has definitely been shrinkage! I am also awaiting a prescription for a pump.

My body hair is just all falling off now, whilst what little I had on my head is starting to come back after falling out due to chemo. It’s strange being “smooth “ after a lifetime of being hairy!!!

I am on HT for life, so that is my lot but I get to see the grandkids (8&nearly 5) grow up - I am their only grandad as we lost their other one to cancer nearly eight years age - so this gives me purpose and strength!

I am so glad that your husband seems to have come out of RT so well, I am expecting to start mine in late autumn ( next oncologist meeting in 2 weeks).  It seems the RT effects can be as variable as the HT effects - it just goes to show how we are all so different on the micro scale.

Have a lovely day with the grandkids, and enjoy your tea ( just taken my wife hers as well!!)

 

Edited by member 04 Aug 2026 at 08:18  | Reason: Additional text

Best wishes - stay positive

CeePee

User
Posted 04 Aug 2026 at 09:02

Hi CeePee

He is on Apalutamide which did add to the sweating and ED a bit. 

There is no research into why some have worse side effects than others. 

Yes there is one worse side effect of PC just not being here. 

I also checked and Darolutamide is very effective and comes with less side effects than Apalutamide.  

Husband is an ex teacher and very actively looks after them. They do have a great relationship with him. They parents split up last year. They adjusted well but my husband is a dad substitute on holiday etc so I was worried about his energy levels. He is 74 but he seems ok so far. 

Hope you have many more happy times with yours 

User
Posted 04 Aug 2026 at 11:45
I'm really surprised at the varieties of ADT drugs everyone's mentioning. I'd been under the impression that there was very little to choose from. I wish I'd been better informed when I had the insomnia last year - might have made a difference.

Another surprise is the timings for RT. I went on RT as soon as they could fit me in, but I recall that I had to have been on HT for a minimum amount of time (think it was 3 months). Have to confess that I struggled with RT - nearly threw the towel in half-way through due to the side-effects. I found it quite draining and it played havoc with my bowels (but that could well have been down to having extended RT because of the PEARLS trial I'm on). The side-effects haven't yet completely disappeared (after about 6 months now) but they're certainly not as bad, at least I can go a whole day now without the ned for an afternoon nap :)

User
Posted 04 Aug 2026 at 16:59
Re return of testosterone, as I mentioned before I was 3yrs Zoladex with 2yrs abiraterone, enzalutimide, prednisolone on trial.

My treatment finished July 2018 and at Jun 2020 testesterone was 20.4 which I gathered was good. It hadnt been tested before or since.

Peter

 
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