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Advise after treatment ends

User
Posted 21 Jan 2020 at 17:08

Hello everyone.

I haven’t posted before but I have scoured the pages many times for answers. 

My husband was diagnosed with prostate cancer that had broken out of the capsule and so we were told no operation. It was also found in 2 lymph nodes and we were told that there is an extremely high chance of future metastasis.

His treatment started with Hormone treatment, which will continue for 3 years. He then had 6 rounds of chemo, closely followed by 23 sessions of radiotherapy and then finally brachytherapy. It was a long slog but we got through. With the brachytherapy being the low point.

My question is are there many other men who have had this regime and how has recovery gone?

My husband is still tired at times and a little breathless sometimes. 

Obviously he is suffering from the side effects of hormone treatment too. No labido and no erections or orgasm.

He is hoping that these will rectify themselves when the hormone injections stop. But will they? Does anyone have any experiences they are happy to share?

We are waiting for an ED clinic appointment but how far in the future that is who knows.

For everyone reading this, we were panic stricken at the start but honestly the treatment has not been as awful as we thought it was going to be.

Thank you for taking the time to read this and for anyone that offers advise or words of wisdom, Thank you.

User
Posted 01 Feb 2020 at 16:58

Hi Partnerandmum, 

Like you, this is my first post. I am in a fairly new relationship my partner had a radical prostatectomy in 2017. I am his first sexual partner since the surgery and radiotherapy. His psa levels have been rising and although he has had a clear bone scan a ct scan showed an enlarged lymph gland in his pelvis so he will have a psma pet scan on Monday. We are aware that there is a high chance he may have to go on HT so your post was interesting for me to read as I had been wondering about side effects.

We use a VED with great success, I guess the difference is for us our sex life started with us having to use a VED so its perfectly normal for us, I can imagine it must be very difficult to go from a sex life which hasn't needed any help ie prior to cancer but we have a very happy fulfilling sex life using the pump. 

Some days you just have to create your own sunshine...... 

User
Posted 21 Jan 2020 at 17:08

Hello everyone.

I haven’t posted before but I have scoured the pages many times for answers. 

My husband was diagnosed with prostate cancer that had broken out of the capsule and so we were told no operation. It was also found in 2 lymph nodes and we were told that there is an extremely high chance of future metastasis.

His treatment started with Hormone treatment, which will continue for 3 years. He then had 6 rounds of chemo, closely followed by 23 sessions of radiotherapy and then finally brachytherapy. It was a long slog but we got through. With the brachytherapy being the low point.

My question is are there many other men who have had this regime and how has recovery gone?

My husband is still tired at times and a little breathless sometimes. 

Obviously he is suffering from the side effects of hormone treatment too. No labido and no erections or orgasm.

He is hoping that these will rectify themselves when the hormone injections stop. But will they? Does anyone have any experiences they are happy to share?

We are waiting for an ED clinic appointment but how far in the future that is who knows.

For everyone reading this, we were panic stricken at the start but honestly the treatment has not been as awful as we thought it was going to be.

Thank you for taking the time to read this and for anyone that offers advise or words of wisdom, Thank you.

User
Posted 03 Feb 2020 at 20:23

Your more than welcome Partnerandmum. Is it your G.P you have asked for referral for ED clinic or the hospital? If it is the hospital and your not getting anywhere perhaps go see your G.P. We also were given the run around initially but we do have a ED appointment now next Monday it appeared nobody knew who should be dealing with it which is ridiculous in my opinion. Having the most satisfying sex life you can have under the circumstances is paramount to not only your husbands mental health and well being but yours as well nobody should have to feel that they are not getting the support needed.
Perhaps see your G.P if you still don’t get the help you are entitled too contact your local PALS. πŸ™‚  

Some days you just have to create your own sunshine...... 

User
Posted 03 Feb 2020 at 20:46

Also, try asking your clinical nurse specialist (Macmillan?). They got me my initial ED clinic appointment, and kept chasing it up.

I got a second one via the radiotherapy radiographers - they can get you appointments very quickly (often same day) with a variety of consultants. In this case, after I'd asked the radiographers, a consultant called me back probably within an hour, and he fixed up the ED clinic appointment. If you are still in contact with your radiographers, you could try this route.

User
Posted 04 Feb 2020 at 16:41

Your right it is a cruel disease, and coping with it is hard enough without the added upset of not getting the help and support you need.

 I found it extraordinary that my partner hadn't been told that he could get a pump on NHS prescription under Schedule 11 and wonder how many others don't get told this or are in your position being passed from pillar to post with what seems very little help or support. I would go back to your GP ( possibly try seeing a different one if possible ) there should be something I would have thought from the consultant to the GP with regards to him referring you. Maybe 3 months is a standard waiting time depending on where you are in the country but it seems awfully long to me and at least if you see GP you will get at least that answered. x

 

 

 

Some days you just have to create your own sunshine...... 

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User
Posted 21 Jan 2020 at 23:12
You need to change your avatar name; using your email address opens you up to spammers and trolls. If you don’t know how to do that, the moderators will help you.

MODERATORS - please note and perhaps help this person to make the necessary changes?

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

User
Posted 22 Jan 2020 at 08:21

Hi, my treatment was similar, but without the chemo. Congratulations on finishing it.

Libido should return when you come off HT, but you don't want to go that long with no erections, as that will permanently damage the erectile parts of the penis (corpus cavernosum). You need to try for what's called Penile Rehabilitation to keep the penis working long term, and it might even enable some sex in the short term.

While you are waiting for the ED clinic, go to your GP, and ask for 5mg daily low dose tadalafil (providing you don't have angina or take glyceryl trinitrate, GTN). Tadalafil will improve blood flow in the corpus cavernosum and help protect it from damage. (Don't be fobbed off with Sildenafil which many GP's like to prescribe instead because it's cheaper - it's unlikely to work because it has a very short duration in the body, and won't achieve anywhere near continuous dosing.)

Tadalafil is a long lasting PDE5 inhibitor, and is more usually used to improve erections. The hormone therapy (HT) significantly reduces libido, which reduces the arousal nerve signals to the penis, and also prevents concentrating on sex, a combination which makes it difficult or impossible to get and maintain an erection. The tadalafil will amplify any arousal nerve signals to the penis, so that if there's a little bit, it's more likely to be able to be able to generate an erection, so there's a chance the tadalafil will help erections return. If that doesn't work, try doubling up the dose by taking tomorrow's 5mg tablet too (and skipping it tomorrow). The most effective time to take them might be a couple of hours before trying for an erection, but it is long lasting and you may find it doesn't matter when you take it.

If that still doesn't work for erections, there are some more things you can try with it. Have your husband try masturbating by himself - the pressure to perform for you might just be too counterproductive, certainly initially when he has no clue if he can even perform for himself. Providing you're both 100% happy it won't damage your relationship, using erotica or soft porn may help him masturbate, and may generate sufficient concentration on the task in hand to generate erections. Sex toys, particularly a vibrating cock ring, many add sufficient extra stimulation that it enables erections, and may also help maintain erections when you try to have sex together.

Note that a man doesn't need an erection to orgasm and HT doesn't prevent orgasm, although loss of libido will probably make it more difficult. Something you might consider is oral sex which is probably the best way to reach orgasm without erection, and something you can do both ways if it will help maintain your relationship. (His orgasms will be dry while on HT, and might remain dry permanently due to the RT.)

If the tadalafil enables erections, he should try to do that probably at least every other day for penile health (doesn't matter about orgasm for this purpose). However, the tadalafil provides some protection even without erections, so don't give it up unless it's causing unwanted side effects (typically headache and stuffed up nose). If that happens, first try dropping it to alternate days, or asking for 2.5mg instead.

If none of this works for sex, the ED clinic has additional tools in the bag. There's the use of vasodilator drugs (Caverject, Invicorp, Muse, Vitaros), and also the use of a pump (Vacuum Erection Device - VED, for both Penile Rehabilitation, and for sex). If they offer a pump, do take up the offer of demoing on yourself in clinic - that doubles the chance of using it correctly at home afterwards. A pump also has the capability to reverse a small amount of recent damage to the corpus cavernosum resulting from a period with no erections, but not any long term damage.

Edited by member 22 Jan 2020 at 08:24  | Reason: Not specified

User
Posted 01 Feb 2020 at 16:58

Hi Partnerandmum, 

Like you, this is my first post. I am in a fairly new relationship my partner had a radical prostatectomy in 2017. I am his first sexual partner since the surgery and radiotherapy. His psa levels have been rising and although he has had a clear bone scan a ct scan showed an enlarged lymph gland in his pelvis so he will have a psma pet scan on Monday. We are aware that there is a high chance he may have to go on HT so your post was interesting for me to read as I had been wondering about side effects.

We use a VED with great success, I guess the difference is for us our sex life started with us having to use a VED so its perfectly normal for us, I can imagine it must be very difficult to go from a sex life which hasn't needed any help ie prior to cancer but we have a very happy fulfilling sex life using the pump. 

Some days you just have to create your own sunshine...... 

User
Posted 03 Feb 2020 at 19:43

Thank you for your honest reply.

We haven’t as yet been offered a pump. In fact we were only offered the tablets because every time we went to an appointment I mentioned the fact that my husband was suffering loss of erections and labido. We have asked numerous times for an ED appointment and have been promised one many times but have not as yet received one. We are always told that we are both still on the young side and that we should get help.

Please don’t get the wrong idea about me. I love my husband very much and would do anything to keep him with me but as long as we are together, we should be able to enjoy each other.

I find it extremely hard that the hormone treatment seems to not only wipe out labido but also memory of pleasure together. 

I keep my fingers firmly crossed that when the hormone treatment ends this time next year, a magical switch is flipped and things , over time return to something like it was.

User
Posted 03 Feb 2020 at 20:23

Your more than welcome Partnerandmum. Is it your G.P you have asked for referral for ED clinic or the hospital? If it is the hospital and your not getting anywhere perhaps go see your G.P. We also were given the run around initially but we do have a ED appointment now next Monday it appeared nobody knew who should be dealing with it which is ridiculous in my opinion. Having the most satisfying sex life you can have under the circumstances is paramount to not only your husbands mental health and well being but yours as well nobody should have to feel that they are not getting the support needed.
Perhaps see your G.P if you still don’t get the help you are entitled too contact your local PALS. πŸ™‚  

Some days you just have to create your own sunshine...... 

User
Posted 03 Feb 2020 at 20:46

Also, try asking your clinical nurse specialist (Macmillan?). They got me my initial ED clinic appointment, and kept chasing it up.

I got a second one via the radiotherapy radiographers - they can get you appointments very quickly (often same day) with a variety of consultants. In this case, after I'd asked the radiographers, a consultant called me back probably within an hour, and he fixed up the ED clinic appointment. If you are still in contact with your radiographers, you could try this route.

User
Posted 04 Feb 2020 at 07:24

Sadly we just seem to be missing out on the appointment from all angles. We have asked our GP, the nurse following up the radiotherapy and brachytherapy and also the consultant. The consultant did send a letter asking for an appointment but that was almost 3 months ago and we have still heard nothing.

I hope your appointment goes well and proves helpful for both of you. As you say it is a need that both people in the partnership have. 
I find it very sad to have to ask or remind my husband that I have a need/ want for intimacy and when, as is often the case this is blocked, I just don’t know what to do next.

This is a cruel disease for everyone involved.

User
Posted 04 Feb 2020 at 16:41

Your right it is a cruel disease, and coping with it is hard enough without the added upset of not getting the help and support you need.

 I found it extraordinary that my partner hadn't been told that he could get a pump on NHS prescription under Schedule 11 and wonder how many others don't get told this or are in your position being passed from pillar to post with what seems very little help or support. I would go back to your GP ( possibly try seeing a different one if possible ) there should be something I would have thought from the consultant to the GP with regards to him referring you. Maybe 3 months is a standard waiting time depending on where you are in the country but it seems awfully long to me and at least if you see GP you will get at least that answered. x

 

 

 

Some days you just have to create your own sunshine...... 

 
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