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ADT RT and ED

User
Posted 21 Oct 2020 at 01:38

I am new to this site, although I was diagnosed with PCa in Oct 2019. I had a Gleason score of 7 (4+3). I under went 20 Radiotherapy sessions completed mid March 2020, and ADT for 7 months (1 + 2x3 monthly Zoladex implants) completed end of May 2020. I am struggling with ED and lack of libido, which has had a devastating effect on me mentally. I am miserable and sad all the time, struggle to sleep and really feel that life isn't worth living, which must make me sound real shallow, but just cant get it out of my head.

I would be interested to hear of anyone who has had similar treatment and what their experiences were concerning ED. Especially interested in what treatment was given to help with ED, if it worked and if it did how long it took.

Read quite a few discussions on the site, but mostly related to RP treatment, which I assume presents different, although similar, ED problems.

I was 59 when I had the treatment and am 60 now, does this mean an end to my sex life, or is there hope for the future.

Thanks in advance,

Will.

P.S I have a consultation with my consultant radiologist on the 29th of Oct and would like to have a bit of knowledge about treatments for ED so that I can have a meaningful discussion with her to agree a way forward.

Update 29/10/2020

I had a consultation today, good news was that my PSA level is 0.01, bad news is that my testosterone is non-existent, so low that they couldn't measure it, which was a bit of a surprise since it is 8 months since the last ADT implant and 5 months since the drug had been depleted. Expected to be at base level at a minimum.

Suppose it explains why I have been feeling so miserable. Ironically, over the past week or so I have felt a positive mood change :-(

So as part of the consultation it was agreed that I will make an appointment with the GP and see what steps I can take to address my ED issues, but suppose with no testosterone any PDE5 inhibitors may prove to be useless. Am going to ask for a low daily dosage of Cialis (2.5 or 5mg), this may help me achieve some nocturnal erections to try and avoid penile atrophy. Hopefully my testosterone will begin to rise sooner rather than later.

Regards,

Will.

Update 27/01/2021

On the 29th Jan 2021 I had a blood test to check my PSA and Testosterone levels, PSA was still showing at 0.01, good news, and Testosterone was 2.4 (normal levels should be between 7.0 and 31.0), so still low, but at least its started to come back, slowly.

After my last update I also had a discussion with my GP and we agreed that I should try Tadalafil (5mg) and see how I go on. Good news is that they have worked, I can now get erections when required, but unsure if its as a result of the Tadalafil or because my Testosterone is starting to come back and my libido has improved. Am going to continue with the Tadalafil until my next consultation in May, and if my testosterone has increased, until at least baseline (7.0), think I will request the GP lower the Tadalafil dosage to 2.5mg and see how I go on at that dosage, with the ultimate goal of not requiring any ED medication going forward.

My out look on life is also more positive and the depression that I was suffering from has gone, probably down to the lack of Testosterone at the time. But my PCA journey hasn't been an easy one, and I definitely was not prepared for the mental impact that ADT would have upon me.

Will give another update in May after my next consultation. In the mean time good luck to all who are having or had treatment for Prostate Cancer. Hope the information I have provided gives an insight into what some folk may expect.

Regards,

Will.

 

 

 

Edited by member 27 Jan 2021 at 20:15  | Reason: Update

User
Posted 21 Oct 2020 at 06:52
Did you have ED before the treatment? If not then things should get better over time as your tostesterone recovers but you need to discuss it with your medical team.
User
Posted 21 Oct 2020 at 09:39

Treatments for ED are fairly straightforward but most won't work unless you have a desire. There isn't really a treatment for loss of libido and, as you were only on HT for a short time, your testosterone should be recovering by now. It would be worth asking for testosterone to be measured with your next blood test. I have to say though that depression / low mood may be the main cause of your lack of libido - treat the mind and the body will catch up.

Have you considered counselling or just talking through the emotional impact of a cancer diagnosis? Is there a Maggie's service at your hospital? Macmillan does a good leaflet about the mental health impact of being diagnosed with cancer and it is a well known phenomenon that the sadness / anxiety / low mood kicks in once treatment has finished.

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

User
Posted 21 Oct 2020 at 11:12

No problems with ED before Treatment, and was still getting erections until about mid April. Seem to get worst side effects from the ADT after the treatment had completed (May 2020).

User
Posted 21 Oct 2020 at 11:21

Thanks for the information LynEyre, went for a PSA test yesterday actually, and they are also going to check my Testosterone level, so the information should be available for the next consultation.

Yep agree, my "Mental" issues probably will have a bearing on the matter. Again, never had any troubles mentally, but the situation just seems to sap your confidence, I worry about how my relationship with my wife will pan out, get the over whelming feeling that I have ruined her life too, but we have been married nearly 41 years, and been together since we were 17, so hopefully we will be strong enough to deal with it.

User
Posted 21 Oct 2020 at 12:54

Will,

You aren't very precise in when your last injection was (May, or 3 months before?)

If in May, it would not be surprising if it wasn't worn off yet, and not impossible even if it was 3 months before.

There are things which can help with sexual function while on (or still under the influence of) hormone therapy, not a lot for lack of libido, but can help with erections for some people when you have lack of libido.

Monitoring your testosterone level while coming off HT is useful to know where you are (and for interpreting your PSA level). When you know where that stands, it might point what to do next.

User
Posted 21 Oct 2020 at 16:08

Hi Andy, thanks for reaching out. To clarify I had the last ADT Implant at the end of Feb 2020, which was a 3 month implant so used by my body at the end of May 2020.

User
Posted 21 Oct 2020 at 16:13

Andy, I would be very interested in what you proposed on your private e-mail. You was correct I couldn't reply..

User
Posted 22 Oct 2020 at 13:40

Hi Will,

           I've been on ADT for 17 months and it finishes next month, I had chemo last year and 37 fractions of RT March this year. I was really proactive and got into an ED clinic very early, I've been using a prescribed pump and daily Cialis. I also add Viagra if needed and use a cock ring. I have a very healthy sex life, however even all this wont help if you don't start to think positive and feel good about yourself. Get yourself to an ED clinic as they have lots of tools in their toolbox to help, I haven't tried injections but believe they work without 'sexy' thoughts so if you use them maybe that will give you confidence in the bedroom which might help your mental state over time.

I'm a very very positive person but even I struggle with it all sometimes.

 

User
Posted 22 Oct 2020 at 15:51

I would try to look on the bright side in that you aren’t going to be on ADT forever and that there’s hope. My oh is on it for life. It’s had a devastating effect on our relationship. I’m 45 and can’t see us ever making love again. I wish you all the luck and positivity you need.

Edited by member 22 Oct 2020 at 16:42  | Reason: Not specified

User
Posted 23 Oct 2020 at 08:40

Originally Posted by: Online Community Member

I would try to look on the bright side in that you aren’t going to be on ADT forever and that there’s hope. My oh is on it for life. It’s had a devastating effect on our relationship. I’m 45 and can’t see us ever making love again. I wish you all the luck and positivity you need.

Hi Sky,

           Why don't you get your husband to join this community, there's a few of us around your husbands age, lots of top tips to help everyone. If he's struggling with ED etc he may not want to openly chat to you regards his fears, worries etc but he may PM some guys on here who are close to his diagnosis that can help. Just a thought.

 

User
Posted 23 Oct 2020 at 19:42

Wow 17 months on ADT, you have done will. I think I missed a trick not getting help with ED earlier, but there again I wasn't really prompted to. Did you need to be referred to an ED Clinic or did you instigate the approach yourself?

Think thats what I need someone to discuss my problems with and to formulate a way forward. Thanks for reaching out to me, much appreciated.

Regards,

Will.

 

 

User
Posted 23 Oct 2020 at 19:50

Thanks Sky, you have just expressed my deepest concern, at the moment our relationship is OK, but going forward if things don't improve I honestly wouldnt blame her if she wanted to re-evaluate our live together.  She is my soul mate and has been ever supportive, even when I have been a proper idiot and miserable. Just don't want her to feel that she is obliged to stay the course, especially when she is still young.

Regards,

Billy.

User
Posted 23 Oct 2020 at 20:33

I expressed concern about losing sexual function right at the beginning, before anything had changed, and the Macmillan CNS's got me an appointment with the ED clinic, who went through what I had to do to try and keep things going. They would have prescribed 5mg daily Tadalafil, except my GP already did so the moment I started on hormone therapy, without me even asking. (I'd gone in ready to ask for it, but he beat me to it.)

You should go along to your GP and ask for a PDE5 inhibitor (Viagra/Sildenafil, Cialis/Tadalafil, etc), which may enable you to get erections. This should be relatively quick to test out. Note that you will need sexual arousal for these drugs to work - you won't get an erection just because you took the pill. You might need to add in other ways to increase arousal and maintain concentration, such as vibrator (perhaps a vibrating cock ring), or erotica or porn. You need to try a PDE5 inhibitor 8 times before you can decide it doesn't work, unless you are getting an unacceptable side effect (such as a stonking headache). If one doesn't work, ask to try a different one (or higher dose). If none of them work, the GP should be able to prescribe Vitaros, a cream which is either used on the head of the penis, or dripped into the urethra (pee hole), depending what dispenser it comes with.

Vitaros is a vasodilator drug. It's the least effective , but it's the one a GP can prescribe without having had an ED clinic appointment first. There are better vasodilator brands, but you have to be shown how to use them in an ED clinic before your GP can prescribe them.

If you can get an erection, but it's not good enough for penetration, a cock ring can help. Even quite gentle pressure on the outside of the penis can make an erection much firmer. These are gentle rings such as the Durex Pleasure Ring (or even more gentle than that), not pump constriction rings.

Also, don't forget there are things like mutual masturbation and oral sex which you can both use, and work without erections.

User
Posted 23 Oct 2020 at 20:48

Great information for me to take to my next consultation (next week) Andy.

 

Regards,

 

Will.

User
Posted 23 Oct 2020 at 23:33
Will1960 please don’t think I was suggesting re-evaluating our lives together. We are best friends and he truly is my other half.

I have been thinking about your and my responses, I don’t think either of us have actually discussed our changing relationship with our partners. We should both take Andy62s and Stalwarts information and advice and be proactive and honest with our loved ones.

Obviously you and my oh are the ones coping with this awful disease but I recognise the feelings you describe. I think it’s just the harsh reality of a sudden change in what we took for granted in our relationships. I wonder if your oh may feel the same?

I intend to have a conversation with my oh prior to his upcoming appointment. Perhaps you could try with your oh too?

User
Posted 23 Oct 2020 at 23:39

Originally Posted by: Online Community Member

Great information for me to take to my next consultation (next week) Andy.

Regards,

Will.

 

Ask at the consultation whether there is an ED or andrology clinic in your area and if so, whether it is the consultant or your GP who is responsible for referring you. Sadly, it all boils down to who holds the budget :-( 

Edited by member 23 Oct 2020 at 23:41  | Reason: Not specified

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

User
Posted 24 Oct 2020 at 13:07

Hi Sky, apologies, didn't mean to refer anything personal. These are very much my own irrational thoughts, of which there are many. Too many to discuss on this forum. My OH has been a star, not sure what she thinks of me at times, must come across as an absolute idiot with some of the things I propose. But you are right about the sudden change to both partners way of life.

Regards,

Will.

User
Posted 24 Oct 2020 at 13:08

Will do Lyn, thanks for the suggestion.

Regards,

Will

 
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