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Should I have testosterone treatment?

User
Posted 15 Nov 2023 at 18:16

Eight weeks of radiotherapy and three years of androgen depletion therapy seem to have sorted out my locally advanced prostate cancer, but I have been left with unwelcome side effects. Erectile dysfunction didn't come as a surprise, but intense hot flushes and an increase in breast tissue did, both of which are more publicly obvious and something I find embarrassing socially. I have recently been offered testosterone replacement therapy to treat the issues but I'm not sure whether to go ahead, given that every treatment I have had for my cancer, which included two rounds of Hifu, has resulted in unexpected and unwanted side effects. I understand that testosterone treatment can't reverse the increase in breast tissue and may even increase it, which is why I am wary of going ahead. My final zoladex injection was 16 months ago and I thought things might have improved over time, but they haven't and I am told they are unlikely to without medical intervention. However, I have sort of learned to live with the situation and wonder if I should leave well enough alone rather than risk more side effects. Any advice or experience you can share would be most welcome.

User
Posted 16 Nov 2023 at 07:54

How long since you finished hormone therapy (i.e. how long since the date you would have had the next injection if you hadn't stopped)?

Is your Testosterone being monitored? (My oncologist added Testosterone to my 3-monthly PSA tests once I finished the hormone therapy.)

I was a bit surprised to be offered TRT by urology about 4 months after my HT ran out, but I said I'd hold fire for the time being knowing it takes 6-15 months to get your Testosterone back, and taking TRT might delay or even prevent my own Testosterone returning. In the event, after 2 years on HT, my own Testosterone remained between 0.2-0.3 until about 9 months when it suddenly recovered (and even overshot the normal range on one reading before settling at a sensible level). PSA and Testosterone graph

I wouldn't wait 5 years because lack of Testosterone has other risks such as cardiovascular disease, but after 3 years on HT, waiting at least 18 months before looking at interventions is probably a good idea.

User
Posted 16 Nov 2023 at 22:30

Very glad it helps Derek.

One thing I should have said was that the insidious mental effects of HT dropped off quite sharply [for me] as soon as the Z was out of my system, so well before the return of any testosterone things improved. I can only deduce from this that the drug itself does have some side effects.

Jules

User
Posted 15 Nov 2023 at 18:16

Eight weeks of radiotherapy and three years of androgen depletion therapy seem to have sorted out my locally advanced prostate cancer, but I have been left with unwelcome side effects. Erectile dysfunction didn't come as a surprise, but intense hot flushes and an increase in breast tissue did, both of which are more publicly obvious and something I find embarrassing socially. I have recently been offered testosterone replacement therapy to treat the issues but I'm not sure whether to go ahead, given that every treatment I have had for my cancer, which included two rounds of Hifu, has resulted in unexpected and unwanted side effects. I understand that testosterone treatment can't reverse the increase in breast tissue and may even increase it, which is why I am wary of going ahead. My final zoladex injection was 16 months ago and I thought things might have improved over time, but they haven't and I am told they are unlikely to without medical intervention. However, I have sort of learned to live with the situation and wonder if I should leave well enough alone rather than risk more side effects. Any advice or experience you can share would be most welcome.

User
Posted 16 Nov 2023 at 00:00

This is just a personal opinion ...

I'd wait till at least 5  years post HT before considering testosterone, partly because it needs at least that period of time before you can start to breath a bit easier on the possibility that you might have dealt with the PC. You would not want to stimulate the cancer if there's still some hanging around. Taking testosterone now might also suppress your own ability to produce the stuff. Continuing on the personal note, although testosterone is returning for me I'll be knocking on the door for some testosterone supplement at 10 years post HT when I'm 85 because I think it has significant QoL values.

For now, I'd suggest that if possible you work on improving your physical fitness. If you haven't been big on this in the past, don't try too much at first and build up slowly with some daily walks and simple stationary exercises. Exercise will burn off some of that fat, re-build your lost muscle mass, improve your bone strength and even eliminate the hot flushes. At 8 months post HT I have no significant hot flushes though the man boobs are going to take some work and I don't expect them to completely go away. Medical intervention shouldn't be required. You haven't given any information on your general level of health, body weight etc, so maybe this doesn't apply to you but post HT your body is inevitably down on where it was before your treatment. The good news is that it's possible to do something about it.

Have you had tests to see if your testosterone is returning naturally?

 

Jules

Edited by member 16 Nov 2023 at 07:55  | Reason: Not specified

User
Posted 16 Nov 2023 at 18:43
I was on Zoladex for 3 years (together with abiraterone & enzalutimide for 2 yrs in trial) with 37 sessions of RT . I had all expected side effects including ones you mention. Some people more knowledgable than me say side effects last for as long as you were on ADT, not in same intensity throughout of course. I'm not sure how long it took for my effects to disappear but it was a long time and I was

prepared to wait that long. The effects did all 'fade away' and no problems since.

Startec Zoladex Autumn 2015 so finished summer 2018, all good so far, latest PSA 0.44 (I obv still have prostate).

Hopefully with luck your effects will go with time and the "added bulk" will go when get a bit more active? I had a lot of added bulk to get rid off &I was pretty active, it is a bit hard to accept I know. I'm sure oncologist & team will look at testosterone levels if you express concern and advise accordingly?

Peter

User
Posted 16 Nov 2023 at 21:32

Originally Posted by: Online Community Member
Some people more knowledgable than me say side effects last for as long as you were on ADT,

Even with your proviso I think that general statement is slightly deceptive and could be depressing for those with HT ahead of them. I'm less than a year past the end of HT and more than happy with where I stand. Hot flushes gone, testosterone returning, puppy fat retreating and all the difficulties with muscle strength and fatigue out the window. So yes, technically I'm not quite back to normal but all the really unpleasant stuff has gone with a theoretical year and a bit to go.

I suppose this varies a lot but I'm 76 so I suspect that if you're otherwise in good health the recovery period is less than you might fear.

One of the reasons I didn't take Zoladex for 3 years was that I took the advice about recovery literally and the idea of spending a significant proportion of the rest of my life in a semi-Z zone was not appealing. Given the reality, I might even have considered taking the Z for 3 years if I'd known the rate of recovery, though possibly not 😄

Jules

Edited by member 16 Nov 2023 at 21:48  | Reason: Not specified

User
Posted 16 Nov 2023 at 21:40

Jules, you give me hope…thank you!🙏

Derek

User
Posted 17 Nov 2023 at 14:33

Many thanks for your considered replies. My PSA and testosterone levels are monitored every six months and have been virtually zero for almost four years - in fact, more or less from when I began ADT in preparation for radiotherapy. Given my hesitation about starting testosterone replacement therapy, I think I will probably delay taking it up for a while longer and see what happens in the meantime. Although I could definitely benefit from losing some weight, I am reasonably fit, playing tennis a couple of times a week. I'm sure that if I increased my level of activity and cut down on food (and wine!) it would help. But, to be honest, I don't find dieting that easy.

User
Posted 18 Nov 2023 at 19:08
Adding to an earlier post of mine, just for interest, I had my testosterone checked Jun 2020 which was 2 yrs after my last Zoladex implant (can't remember if I actually asked for it or was offered it) and the result was 20.4. Think that was only time I had testosterone checked.

Peter

User
Posted 18 Nov 2023 at 22:38

Originally Posted by: Online Community Member
Andy your graph is really helpful and gives me hope. I had my last Zoladex in January after three years on the stuff and I can't wait to get some T back in my system. I'm curious as to how you managed to get such frequent blood tests?

I was still on 3-monthly blood tests at that time. I was going to ask to add Testosterone when I finished the hormone therapy, but before I could, my oncologist added it on anyway, saying they need to know when it recovers so thy can make sense of the expected rise in PSA it causes. I always took a printout of the graph with me, so they could see I was very interested in it. One of the appointments was with urology to talk about erectile function, and I showed the registrar the graph and asked if I could have another test. He initially said no, but then he was very interested in it, and decided he would be interested to see another sample (although he'd left by the time I next visited). Same with my GP, so I managed to get another couple of tests. I also bought a postal one from mypsatests.org.uk, but I messed up that PSA test by doing it 2 days after a COVID vaccination (didn't know that screwed up PSA test results at the time).

Since my Testosterone returned to a stable level and my PSA looked stable too, I'm now on 6-monthly PSA testing and no Testosterone tests, but I think after the next PSA test probably in Jan/Feb, I may be on annual PSA tests, and they apparently do one final Testosterone test when I switch to annual PSA tests.

This all varies by institute and oncologist.

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User
Posted 16 Nov 2023 at 00:00

This is just a personal opinion ...

I'd wait till at least 5  years post HT before considering testosterone, partly because it needs at least that period of time before you can start to breath a bit easier on the possibility that you might have dealt with the PC. You would not want to stimulate the cancer if there's still some hanging around. Taking testosterone now might also suppress your own ability to produce the stuff. Continuing on the personal note, although testosterone is returning for me I'll be knocking on the door for some testosterone supplement at 10 years post HT when I'm 85 because I think it has significant QoL values.

For now, I'd suggest that if possible you work on improving your physical fitness. If you haven't been big on this in the past, don't try too much at first and build up slowly with some daily walks and simple stationary exercises. Exercise will burn off some of that fat, re-build your lost muscle mass, improve your bone strength and even eliminate the hot flushes. At 8 months post HT I have no significant hot flushes though the man boobs are going to take some work and I don't expect them to completely go away. Medical intervention shouldn't be required. You haven't given any information on your general level of health, body weight etc, so maybe this doesn't apply to you but post HT your body is inevitably down on where it was before your treatment. The good news is that it's possible to do something about it.

Have you had tests to see if your testosterone is returning naturally?

 

Jules

Edited by member 16 Nov 2023 at 07:55  | Reason: Not specified

User
Posted 16 Nov 2023 at 07:54

How long since you finished hormone therapy (i.e. how long since the date you would have had the next injection if you hadn't stopped)?

Is your Testosterone being monitored? (My oncologist added Testosterone to my 3-monthly PSA tests once I finished the hormone therapy.)

I was a bit surprised to be offered TRT by urology about 4 months after my HT ran out, but I said I'd hold fire for the time being knowing it takes 6-15 months to get your Testosterone back, and taking TRT might delay or even prevent my own Testosterone returning. In the event, after 2 years on HT, my own Testosterone remained between 0.2-0.3 until about 9 months when it suddenly recovered (and even overshot the normal range on one reading before settling at a sensible level). PSA and Testosterone graph

I wouldn't wait 5 years because lack of Testosterone has other risks such as cardiovascular disease, but after 3 years on HT, waiting at least 18 months before looking at interventions is probably a good idea.

User
Posted 16 Nov 2023 at 18:43
I was on Zoladex for 3 years (together with abiraterone & enzalutimide for 2 yrs in trial) with 37 sessions of RT . I had all expected side effects including ones you mention. Some people more knowledgable than me say side effects last for as long as you were on ADT, not in same intensity throughout of course. I'm not sure how long it took for my effects to disappear but it was a long time and I was

prepared to wait that long. The effects did all 'fade away' and no problems since.

Startec Zoladex Autumn 2015 so finished summer 2018, all good so far, latest PSA 0.44 (I obv still have prostate).

Hopefully with luck your effects will go with time and the "added bulk" will go when get a bit more active? I had a lot of added bulk to get rid off &I was pretty active, it is a bit hard to accept I know. I'm sure oncologist & team will look at testosterone levels if you express concern and advise accordingly?

Peter

User
Posted 16 Nov 2023 at 21:32

Originally Posted by: Online Community Member
Some people more knowledgable than me say side effects last for as long as you were on ADT,

Even with your proviso I think that general statement is slightly deceptive and could be depressing for those with HT ahead of them. I'm less than a year past the end of HT and more than happy with where I stand. Hot flushes gone, testosterone returning, puppy fat retreating and all the difficulties with muscle strength and fatigue out the window. So yes, technically I'm not quite back to normal but all the really unpleasant stuff has gone with a theoretical year and a bit to go.

I suppose this varies a lot but I'm 76 so I suspect that if you're otherwise in good health the recovery period is less than you might fear.

One of the reasons I didn't take Zoladex for 3 years was that I took the advice about recovery literally and the idea of spending a significant proportion of the rest of my life in a semi-Z zone was not appealing. Given the reality, I might even have considered taking the Z for 3 years if I'd known the rate of recovery, though possibly not 😄

Jules

Edited by member 16 Nov 2023 at 21:48  | Reason: Not specified

User
Posted 16 Nov 2023 at 21:40

Jules, you give me hope…thank you!🙏

Derek

User
Posted 16 Nov 2023 at 22:30

Very glad it helps Derek.

One thing I should have said was that the insidious mental effects of HT dropped off quite sharply [for me] as soon as the Z was out of my system, so well before the return of any testosterone things improved. I can only deduce from this that the drug itself does have some side effects.

Jules

User
Posted 17 Nov 2023 at 14:33

Many thanks for your considered replies. My PSA and testosterone levels are monitored every six months and have been virtually zero for almost four years - in fact, more or less from when I began ADT in preparation for radiotherapy. Given my hesitation about starting testosterone replacement therapy, I think I will probably delay taking it up for a while longer and see what happens in the meantime. Although I could definitely benefit from losing some weight, I am reasonably fit, playing tennis a couple of times a week. I'm sure that if I increased my level of activity and cut down on food (and wine!) it would help. But, to be honest, I don't find dieting that easy.

User
Posted 18 Nov 2023 at 13:25

Originally Posted by: Online Community Member

I was a bit surprised to be offered TRT by urology about 4 months after my HT ran out, but I said I'd hold fire for the time being knowing it takes 6-15 months to get your Testosterone back, and taking TRT might delay or even prevent my own Testosterone returning. In the event, after 2 years on HT, my own Testosterone remained between 0.2-0.3 until about 9 months when it suddenly recovered (and even overshot the normal range on one reading before settling at a sensible level). PSA and Testosterone graph

Andy your graph is really helpful and gives me hope.  I had my last Zoladex in January after three years on the stuff and I can't wait to get some T back in my system.  I'm curious as to how you managed to get such frequent blood tests?  I've only just had my first post-HT test done (PSA and total T) and will get the results on Monday.  Then I know I won't be offered another for at least six months.  

Cheers

User
Posted 18 Nov 2023 at 19:08
Adding to an earlier post of mine, just for interest, I had my testosterone checked Jun 2020 which was 2 yrs after my last Zoladex implant (can't remember if I actually asked for it or was offered it) and the result was 20.4. Think that was only time I had testosterone checked.

Peter

User
Posted 18 Nov 2023 at 22:38

Originally Posted by: Online Community Member
Andy your graph is really helpful and gives me hope. I had my last Zoladex in January after three years on the stuff and I can't wait to get some T back in my system. I'm curious as to how you managed to get such frequent blood tests?

I was still on 3-monthly blood tests at that time. I was going to ask to add Testosterone when I finished the hormone therapy, but before I could, my oncologist added it on anyway, saying they need to know when it recovers so thy can make sense of the expected rise in PSA it causes. I always took a printout of the graph with me, so they could see I was very interested in it. One of the appointments was with urology to talk about erectile function, and I showed the registrar the graph and asked if I could have another test. He initially said no, but then he was very interested in it, and decided he would be interested to see another sample (although he'd left by the time I next visited). Same with my GP, so I managed to get another couple of tests. I also bought a postal one from mypsatests.org.uk, but I messed up that PSA test by doing it 2 days after a COVID vaccination (didn't know that screwed up PSA test results at the time).

Since my Testosterone returned to a stable level and my PSA looked stable too, I'm now on 6-monthly PSA testing and no Testosterone tests, but I think after the next PSA test probably in Jan/Feb, I may be on annual PSA tests, and they apparently do one final Testosterone test when I switch to annual PSA tests.

This all varies by institute and oncologist.

 
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