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Mental side effects of Hormone treatment

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User
Posted 07 Jun 2017 at 12:19

Age 59


PSA26


Biopsy - left side 5 out of 5 possitive- right side one out of 5 positive but almost indistinct


Gleason 4+3


MRI shows clear


Bone scan clear


Very fit & healthy, no symptoms


Hi this is my first post and like many I am at the stage of having two choices - between surgery (including lymph node removal) and radiotherapy proceeded by 3 months of hormone treatment. I have discussed the options with my surgeon and oncologist and aslo read up a lot on the pros and cons of the surgery vs radiotherapy and I am swayed towards RT even though I'm relatively young. The only thing I am unsure about is information on the long term side effects of the hormone therapy that they give you before the radiotherapy. The possible side effects of surgery and RT are mostly physical but I was wondering about the mental side effects of the hormone therapy. Specifically - hormones effect sexual function by reducing libido as well as causing ED. I was wondering if after the hormone treatment stops does your testosterone level gradually recover or is it permanantly reduced? If it is permanantly reduced and you recover erectile function will your libido be permanently reduced ? Similarly you can get depression while on hormones - does this ease off when you stop the hormone treatment ?


I know it might be quite difficult to seperate the side effects from those of the radiotherpy as one treatment segues into the other but I would appreciate any insights on this.

User
Posted 07 Nov 2017 at 14:07

Thanks for those that replied 5 months ago to this post. Since my first post I have gone down the Hormone treatment prior to Radiotherapy route. My PSA has gone from 30 to 1 so far before any radiotherapy !
Heres my experience as I approach the end of my hormone therapy.



4 weeks of bicalumide pills followed by injections of Prostap once a month in the tummy by nurse at local surgery- dont even notice the needle going in.



There has been no serious mental side effects of the depressive type - in fact I have surprised myself in how much I have remained positive and "up".



Hot flushes are annoying - not during the day but every night I am woken regularly being seriously hot and clammy. Ive kind of got used to this now but I look forward to the day I can sleep through the night. I dream a lot more but this is probably more to do with the interrupted sleep than the Prostap.



No real lethargy and I have continued to work - physical and longish hours - I'll stop when RT begins but will continue to exercise.



I do occasionally get migraines that lay me out for a day but not regular.



With erectile dysfunction its mostly erectile disinterest due to the loss of libido making you not in the least interested in sex. Its not the physical ED you get when your nerve bundles are damaged during RT or RP. Erections are possible - the mechanism isnt damaged - (unless youve already had RT or RP)



On the libido side it went to zero almost overnight about 4 weeks into Prostap. I have found that having zero libido has been strange. If you have no sexual urges and your partner has low libido its possible to lapse into a situation where you just dont bother with sex and arent really that concerned - this may sound strange to those who are not yet on hormone therapy , I know you cant imagine not wanting sex and not being bothered about that - I wouldnt have believed it 5 months ago.
While this can be a godsend to some I would urge others to just make the effort and "give it a go" without trying to perform or necessarily reach any conclusion. On hormone therapy you can get erections with no libido. Sex probably isnt ever going to be as it was prior to Prostate Cancer - when I orgasm I am completely "dry" and the whole mental side of sex has had to change - orgasm isnt the be all and end all - sometimes it happens sometimes it doesnt - no frustration - but its become something different and is still fun and satisfying and more importantly maintains a physical closeness with my wife that we both really enjoy.
After hormone therapy finishes and Ive had my Radiotherapy I am imagining this situation will reverse - my libido should gradually return and I will probably need to deal with physical erectile dysfunction (due to zapping the nerve bundles) and sex will change again - then later maybe the erectile function will gradually return (heres hoping Im in that 50%) and it will change again - it will be a journey of discovery I'm sure.



I was so low and dreading the effect on my sex life when I was dignosed - it was so important to me - can you believe I even considered not having any treatment and letting the cancer run its course so as not to effect my sex life ! But once youve come to terms with your new sex life its amazing how you begin to realise fun and experiment and physical closeness are still there and at the same time you are battering the hell out of that bloody cancer that could kill you.
Anyway thats my experience so far down this road.

User
Posted 08 Jun 2017 at 08:54

Can't help with your query Tony as I don't have the knowledge but I'm bumping you before you disappear to far down the list in the hope that somebody else can help.

Welcome tot he site by the way

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 08 Jun 2017 at 09:36

Physical side effects can create mental problems - RT comes with a high risk of permanent ED which even if helped by meds can still give emotional issues for partener and yourself.

T levels should get get back to circa normal levels particularly as your HT is only proposed for a short time. I had 47 months of HT and would regard my T levels as Ok.

Ray

Edited by member 08 Jun 2017 at 09:41  | Reason: Not specified

User
Posted 11 Oct 2017 at 21:38
HT side effects:
I am nearly a year into HT with Prostap after RT in Feb to March this year (2017) and with a prospective of another 12 months of HT.

I Probably I have lack of libido but not a problem. There’s some ED but I occasionally awake with a slight erection in the morning as before but it soon goes.

I am putting on weight, about 2-3 kg which has pushed my BMI to just over 25 now.

No signs of fatigue, I regularly achieve my 10 000 steps a day with no bother.

I now only need to shave every other day and my hair is less greasy.

However, a new symptom has appeared. One of our dogs has just been put to sleep and it has hit me really hard. My emotional state is tending to tears quite quickly. My wife suggested that the female hormones are kicking in which sort of makes sense.

Otherwise, hot flushes notwithstanding, it’s copable with.
User
Posted 07 Nov 2017 at 16:10

Hi Tony - agree with Chris this is a really useful honest post. Great for me to read too x

User
Posted 08 Nov 2017 at 13:43

So sorry to hear your cancer had spread Chris. Hang in there - if they cant find it yet thats probably good isnt it ?


If you go onto hormone therapy dont worry too much - the loss of libido is strange but you work around it and oddly enough it stops you getting too depressed about your sex life. As to the hot flushes I found out yesterday that my local cancer hospital advize and provide accupuncture to reduce this side effect - they say it really works well so Im definately going to give it a go. As I said in my post my PSA went from 30 to 1 in just 4 months of Prostap injections so it really works at starving the cancer.  Good luck mate.


Tony

Show Most Thanked Posts
User
Posted 08 Jun 2017 at 08:54

Can't help with your query Tony as I don't have the knowledge but I'm bumping you before you disappear to far down the list in the hope that somebody else can help.

Welcome tot he site by the way

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 08 Jun 2017 at 09:36

Physical side effects can create mental problems - RT comes with a high risk of permanent ED which even if helped by meds can still give emotional issues for partener and yourself.

T levels should get get back to circa normal levels particularly as your HT is only proposed for a short time. I had 47 months of HT and would regard my T levels as Ok.

Ray

Edited by member 08 Jun 2017 at 09:41  | Reason: Not specified

User
Posted 11 Oct 2017 at 21:38
HT side effects:
I am nearly a year into HT with Prostap after RT in Feb to March this year (2017) and with a prospective of another 12 months of HT.

I Probably I have lack of libido but not a problem. There’s some ED but I occasionally awake with a slight erection in the morning as before but it soon goes.

I am putting on weight, about 2-3 kg which has pushed my BMI to just over 25 now.

No signs of fatigue, I regularly achieve my 10 000 steps a day with no bother.

I now only need to shave every other day and my hair is less greasy.

However, a new symptom has appeared. One of our dogs has just been put to sleep and it has hit me really hard. My emotional state is tending to tears quite quickly. My wife suggested that the female hormones are kicking in which sort of makes sense.

Otherwise, hot flushes notwithstanding, it’s copable with.
User
Posted 07 Nov 2017 at 14:07

Thanks for those that replied 5 months ago to this post. Since my first post I have gone down the Hormone treatment prior to Radiotherapy route. My PSA has gone from 30 to 1 so far before any radiotherapy !
Heres my experience as I approach the end of my hormone therapy.



4 weeks of bicalumide pills followed by injections of Prostap once a month in the tummy by nurse at local surgery- dont even notice the needle going in.



There has been no serious mental side effects of the depressive type - in fact I have surprised myself in how much I have remained positive and "up".



Hot flushes are annoying - not during the day but every night I am woken regularly being seriously hot and clammy. Ive kind of got used to this now but I look forward to the day I can sleep through the night. I dream a lot more but this is probably more to do with the interrupted sleep than the Prostap.



No real lethargy and I have continued to work - physical and longish hours - I'll stop when RT begins but will continue to exercise.



I do occasionally get migraines that lay me out for a day but not regular.



With erectile dysfunction its mostly erectile disinterest due to the loss of libido making you not in the least interested in sex. Its not the physical ED you get when your nerve bundles are damaged during RT or RP. Erections are possible - the mechanism isnt damaged - (unless youve already had RT or RP)



On the libido side it went to zero almost overnight about 4 weeks into Prostap. I have found that having zero libido has been strange. If you have no sexual urges and your partner has low libido its possible to lapse into a situation where you just dont bother with sex and arent really that concerned - this may sound strange to those who are not yet on hormone therapy , I know you cant imagine not wanting sex and not being bothered about that - I wouldnt have believed it 5 months ago.
While this can be a godsend to some I would urge others to just make the effort and "give it a go" without trying to perform or necessarily reach any conclusion. On hormone therapy you can get erections with no libido. Sex probably isnt ever going to be as it was prior to Prostate Cancer - when I orgasm I am completely "dry" and the whole mental side of sex has had to change - orgasm isnt the be all and end all - sometimes it happens sometimes it doesnt - no frustration - but its become something different and is still fun and satisfying and more importantly maintains a physical closeness with my wife that we both really enjoy.
After hormone therapy finishes and Ive had my Radiotherapy I am imagining this situation will reverse - my libido should gradually return and I will probably need to deal with physical erectile dysfunction (due to zapping the nerve bundles) and sex will change again - then later maybe the erectile function will gradually return (heres hoping Im in that 50%) and it will change again - it will be a journey of discovery I'm sure.



I was so low and dreading the effect on my sex life when I was dignosed - it was so important to me - can you believe I even considered not having any treatment and letting the cancer run its course so as not to effect my sex life ! But once youve come to terms with your new sex life its amazing how you begin to realise fun and experiment and physical closeness are still there and at the same time you are battering the hell out of that bloody cancer that could kill you.
Anyway thats my experience so far down this road.

User
Posted 07 Nov 2017 at 15:57

Hi Tony
Fantastic honest post which I have followed with great interest thank you. Click my picture and read my profile. I’m 50 now. I picked the surgery route at 48 and had complete ED as expected. I had nerve sparing and with great will and drive and a lovely partner have managed near full return of function , but only with daily Cialis or injections. Sadly my cancer had already spread and is now incurable , although we’ve not quite found where it is yet. I’ve requested I stay off treatment as long as possible but will soon have to have HT and Chemo which distresses me to the core — the thought of ED all over again but loss of libido on top !!
I , like you , nearly refused treatment outright. If they had got the cancer I’d be in a good position now with a good life. Mentally the toll has been awful on us both with more unhappiness than happiness I reckon. I’m beginning to wish I’d just let the cancer take its course to be honest. But no use looking back ...... your post is helping me look forward a bit

User
Posted 07 Nov 2017 at 16:10

Hi Tony - agree with Chris this is a really useful honest post. Great for me to read too x

User
Posted 08 Nov 2017 at 13:43

So sorry to hear your cancer had spread Chris. Hang in there - if they cant find it yet thats probably good isnt it ?


If you go onto hormone therapy dont worry too much - the loss of libido is strange but you work around it and oddly enough it stops you getting too depressed about your sex life. As to the hot flushes I found out yesterday that my local cancer hospital advize and provide accupuncture to reduce this side effect - they say it really works well so Im definately going to give it a go. As I said in my post my PSA went from 30 to 1 in just 4 months of Prostap injections so it really works at starving the cancer.  Good luck mate.


Tony

 
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