Hormone therapy duration

User

Posted 13 Jul 2022 at 20:46

I'm coming up to 18 months on Zolodox and had radiation (6*6) last October and Enzalutomide (daily 4*40). My PSA and testosterone have been undetectable 9 months. I have 3 monthly telephone chats with oncology department but there is never much to report - fatigues, loss of libido, no weight gain, feel OK. Last time I met with the oncologist I asked him what the future held in terms of the hormone treatment and whether I would be able to come off it - to which he replied with a firm no.

User

Posted 14 Jul 2022 at 02:09

I was 56 when I started HT.

User

Posted 16 Jul 2022 at 17:10

Hormone therapy for too long is like killing a Ant with a sledge hammer!!

I have been on hormone therapy for 18 months my psa is now 0.01, I have asked to stop the hormone injections 6 months early they are saying maybe to replace injections with tablets which are kinder to my body with less side effects the tablets will allow my testosterone to come back slowly to help to get some sexual function back hopefully.

User

Posted 16 Jul 2022 at 17:32

Mingman, I doubt 6 months will make any difference to your cancer, it could make a massive difference to your life.

User

Posted 18 Jul 2022 at 18:19

Thanks for the post, I had prostate cancer 8 years ago in 2014 I was 59 years old and I flatly refused hormone treatment because I was terrified by it and the side effects. my oncologist understood and arranged for me to have RT and brachytherapy. it worked and I had 8 years of remission. It is now back with a vengeance and has spread to my ribs and lymph nodes. The oncos are saying I must have the HT, but I am still sh*** scared of it and don't know what to do, and don't know If I can face the horrible side effects.

User

Posted 18 Jul 2022 at 18:24

Hi Nick been on decapeptyl 14 months found it tolerable 👍

User

Posted 18 Jul 2022 at 18:40

I was on HT for two years it was OK. Now if someone said, you will have to go on it for life, I would have to give it a lot of thought.

It might be worth you starting a new thread, because I'm sure this will start plenty of discussion and I'm sure you will be here a few more years yet.

Dave

User

Posted 18 Jul 2022 at 20:11

Thanks Dave!!

User

Posted 19 Jul 2022 at 19:27

Originally Posted by: Online Community Member

Thanks for the post, I had prostate cancer 8 years ago in 2014 I was 59 years old and I flatly refused hormone treatment because I was terrified by it and the side effects. my oncologist understood and arranged for me to have RT and brachytherapy. it worked and I had 8 years of remission. It is now back with a vengeance and has spread to my ribs and lymph nodes. The oncos are saying I must have the HT, but I am still s*** scared of it and don't know what to do, and don't know If I can face the horrible side effects.

It would be better if you started your own thread Nick so that we are not cluttering up someone else's information but I do wonder how realistic you are being. You have advanced prostate cancer with bone mets; any side effects from the hormone treatment will be nothing in comparison to being terminally ill with bone mets - loss of mobility, possible paralysis due to dpinal cord compression, trying to breathe with rib mets, inability to urinate leading to permanent catheterisation, odema leading to possible heart or other organ failure, it can be a fairly awful death. And if it is loss of libido that worries you, once those bone mets take hold you probably wouldn't be able to have sex anyway due to the pain and risk of breakages and, as the disease progresses, you would be far too ill to feel randy.

It is easy to compare life as it is now with your greatest fears about life as it might be on treatment but that is flawed thinking - the comparison should be between what life is going to be like without treatment v what life could be like with treatment. Better perhaps to have the hormones, control the cancer and negotiate yourself a decent quality of life for as long as possible followed by an end of life in which the worst bits have been avoided / controlled?

Edited by member 19 Jul 2022 at 19:58 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Jul 2022 at 06:18

Originally Posted by: Online Community Member

Sexual function all works, lots of surprise erections, but strangely libido might not be back to pre-HT levels, or it might be that I've forgotten a bit what libido is.

Interesting observation Andy. Like most ADT people I expect, libido vanished almost instantly for me when I started on zoladex. Strangely [to use your word] I was still able to have orgasms up until about 6 months ago [a year and a half from the start of ADT]. Now, at 2 years, I can't. It seems that although testosterone libido drops off fast, there's some sort of "mental" libido that persists while the brain still remembers.

Nothing new in the observation that libido isn't locked to testosterone but the extent to which libido is a mental thing is not to be understated and your observation that you might have forgotten what libido is, sounds spot on to me.

Aaagh, if it's not difficult enough rebuilding physically, it's another little challenge that libido might need to be treated sensitively and with empathy 😀.

Jules

User

Posted 20 Jul 2022 at 13:38

Hi, Thank you for your very clear reply, I am new to this forum game & I did not intend to clutter up anybody else's stuff & am sorry if I did. I will start a new thread. I am trying to be realistic but it's hard when you are scared. thanks, NICK

Edited by member 20 Jul 2022 at 13:50 | Reason: Not specified

User

Posted 20 Jul 2022 at 20:41

Libido still good 18 months into Decapeptyl. Erections fine and useable. But pretty much lost the ability to orgasm myself but doesn’t stop some fun.

User

Posted 22 Oct 2022 at 14:01

Started zoladex Jan 2022 following diagnosis with T3b N0M0 gleason 9 at age 78. RT at Royal Surrey May/June,60 gy in 20 fractions. Saw oncologist Sept 2022, psa now 0.08 a d told I can stop zoladex now after 3 implants As side effects not good I am happy to do this. Is this short duration HT usual?

User

Posted 22 Oct 2022 at 15:09

It is a little unusual, but not a problem. HT is most important before and during HT, after HT it adds diminishing benefit. Treatment to cure prostate cancer is about 70% successful, stopping HT early might reduce that to 65%.

At 78 you have to accept your life expectancy is about 10 years, if the cancer returns it will be about 7 years. Another 2 years of HT with side effects would reduce your quality of life now, for the potential of giving you an extra couple of years in a nursing home.

No way of knowing what your actual future holds with or without HT, but on balance I think you are better without it at your age and with your side effects.

Dave

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