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RT and HT - HT side effects

User
Posted 14 Sep 2023 at 19:44

Hi all, I have the choice of Prostatectomy or RT with HT.  The HT side effects ( probably for 3 years but to be decided) seem pretty life changing in themselves and are putting me off that option, so does anyone have any Experiences , good or bad, they can share with me?  I am well versed in after effects of Prostatectomy But can’t seem to find many real life experiences of HT.  Thanks

User
Posted 15 Sep 2023 at 19:05

I did radiotherapy and hormone therapy. Told HT would be for 18-36 months at the outset.

I didn't have any issues on HT that I couldn't cope with. Exercise should be considered mandatory. I am a cyclist anyway and continued doing that, and also added some online exercise classes for cancer patients which tackled things like avoiding osteoporosis.

When I was coming up to 18 months, I asked my oncologist how long again. He said given my PSA, I could stop anytime I liked from 18 months. I decided I could cope easily for a bit longer and actually went on to 22 months, on the basis it might give me an extra 1% chance of a cure.

I was lucky on HT, very few troubling symptoms. I think the exercise prevented any fatigue, and I didn't get hot sweats.

I would choose the same treatment again. After my Testosterone came back, I told my oncologist I almost wouldn't know anything had been done, which was not at all what I was imagining at the outset. Again, some luck was involved there, but I did put in quite some effort learning who to look after myself during the treatment, although I'll never know if it made any difference. Clearly there are people who really struggle on HT, but I think most get by OK when it's time limited. (Different thing when it's lifelong.)

User
Posted 15 Sep 2023 at 20:25

I was on zoladex for two years from 2018 to 2020. Click on my avatar and view my profile to  see more. I had no real problems, yes a few hot sweats lack of libido etc. If I were in the same position again I would have the same treatment. I do have ED, if I had known about penile rehab earlier it may have helped, but it is manageable with tablets. 

If I had to be on HT for life I would probably refuse, life is more fun with testosterone. 

Just for balance as you have had three reasonably positive reports, one of our members hated being on HT. He has a link from his profile to his blog.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=49973

 

Dave

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User
Posted 14 Sep 2023 at 22:22

Hi Tmick,

you might like to read about my  continuing journey(ordeal!) through HT/RT…

https://community.prostatecanceruk.org/posts/t28905-My-Journey-through-HT-and-RT

Everyone is different some men have very few side effects, others (like me) have them all..and more I didn’t  know about. RT for me was a breeze but HT? You have to work hard to overcome the many possible side effects.

There are many posts about this difficult  decision Marky has recently just made the decision to go for surgery so worth reading his post as well.

Good luck with your decision. 

User
Posted 15 Sep 2023 at 18:52
I had RT and 3 yrs of HT (ZOLADEX) including 2 yrs with abiraterone, enzalutimide, prednisolone as part of trial.

My PSA was 21 on diagnosis, slight spread to seminal vesicles, gleason 8 (later 9 after TURP [part of prostae cut away]).

Treatment finished summer 2018, I seemed to get all the side effects but, after a fair bit of time upon completion, side effects were sort of history.

I'd 'choose' the same treatment again knowing what I know now, tho the RT/HT route was the only option put to me.

Peter

User
Posted 15 Sep 2023 at 19:05

I did radiotherapy and hormone therapy. Told HT would be for 18-36 months at the outset.

I didn't have any issues on HT that I couldn't cope with. Exercise should be considered mandatory. I am a cyclist anyway and continued doing that, and also added some online exercise classes for cancer patients which tackled things like avoiding osteoporosis.

When I was coming up to 18 months, I asked my oncologist how long again. He said given my PSA, I could stop anytime I liked from 18 months. I decided I could cope easily for a bit longer and actually went on to 22 months, on the basis it might give me an extra 1% chance of a cure.

I was lucky on HT, very few troubling symptoms. I think the exercise prevented any fatigue, and I didn't get hot sweats.

I would choose the same treatment again. After my Testosterone came back, I told my oncologist I almost wouldn't know anything had been done, which was not at all what I was imagining at the outset. Again, some luck was involved there, but I did put in quite some effort learning who to look after myself during the treatment, although I'll never know if it made any difference. Clearly there are people who really struggle on HT, but I think most get by OK when it's time limited. (Different thing when it's lifelong.)

User
Posted 15 Sep 2023 at 20:25

I was on zoladex for two years from 2018 to 2020. Click on my avatar and view my profile to  see more. I had no real problems, yes a few hot sweats lack of libido etc. If I were in the same position again I would have the same treatment. I do have ED, if I had known about penile rehab earlier it may have helped, but it is manageable with tablets. 

If I had to be on HT for life I would probably refuse, life is more fun with testosterone. 

Just for balance as you have had three reasonably positive reports, one of our members hated being on HT. He has a link from his profile to his blog.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=49973

 

Dave

User
Posted 18 Sep 2023 at 08:23
There are lots and lots of accounts of HT in these forums. Most men tolerate it well; a very few find it unbearable. Personally I found it tolerable. Not pleasant, but nothing too awful. I had major "brain fog" for the first couple of months on HT, but that cleared up. I had fatigue and gained weight, but I didn't experience the hot flushes that many men do.

Basically it's very much a personal experience and it's impossible to predict what side-effects you will or won't have.

Chris

User
Posted 18 Sep 2023 at 13:51

Hi all, Thanks so much for all your replies.  As I thought, it’s different for everyone but your replies have given me a better picture. 

 
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