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50 year old gay doctor in Kent - Surgery (prostatectomy / RP)

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User
Posted 11 May 2016 at 21:54

Thanks, Liela.
I hope he gets on OK.
We have made progress with intimacy through patience, waiting till we felt like doing things, and without much open discussion about it.
My OH felt a pressure to climax for the both of us, as it were, since I couldn't do that in the way we used to. I tried to balance taking the pressure off him with still letting him know I love and fancy him.
For me a shift came when he asked me in bed one morning to take off my pants and pad. I realised I have wanted to have no risk of him being in contact with a leak of urine. It seemed to me that in fact he wanted to touch me, and must have been happy to risk a bit of wetness. If there was any he didn't let me know!
Since then we have had sex to orgasm in new ways and this has been good for our relationship.
If it had taken much longer we would have had to face it, talk about it and if necessary seek help (I assume the relationship work offered by PCUK works on this often). Depending how things go, I guess we might have to do that, or to find new ways to be intimate if we can't do our usual (still focused on orgasm - call us old-fashioned!).
Ultimately what one's after is that great intimate connection that comes from sex.
Enjoy the wine.
Henry

User
Posted 11 May 2016 at 22:21
Ahh Henry, thank you so much for sharing your intimacies. We managed to have intercourse just before he had his brachytherapy, and he said it was very special, as it made him realise I ' still fancied him' which I do. This horrible disease has impacted on our physical relationship, which we both delighted in and we are I suppose in a way grieving it's loss, potentially wondering quietly if we can resume, one day. We ain't in the first flush of youth at 65 and 61, we both enjoyed each other immensely. We have talked a great deal about this, how it will be managed, we both hope to resume a physical aspect to our loving relationship one day. I have to say this forum is the only place I've found where we can, or I can vent my feelings safely. I respect your honesty, and it has helped me realise my feelings, thank you.He is currently having RT and has three years of HT, so we have to think of these aspects as well. Meanwhile well I'm delighted for you,

Leila.

Edited by member 12 May 2016 at 05:06  | Reason: Not specified

User
Posted 11 May 2016 at 22:27

Or even meanwhile

User
Posted 13 May 2016 at 17:11

Henry

It was fabulous reading your posts. I haven't been on here for a while and it was really refreshing to read them. Great to see you found the group at Metro Walnut. I have been at the Manchester and Birmingham Groups and found the discussions invaluable in supporting me mentally over the last 3 years. We tend to forget the pyscosexual impact of prostate cancer treatments. Like you I bought a bathmate before I got my NHS issued pump and I still use it in the shower and bath as part of my regular routine for maintaining the health of my penis. Bit like going to the gym each day. One of the guys at our Birmingham group uses the Caverject and it works for him, glad to see it starting to work for you. I have been fortunate in that my GP accepting a letter from my urologist has prescribed daily Cialis and sildenafil , acknowledging that firmer erections are needed for anal sex and that I needed that boost of 100mg sildenafil. We have others at our support group who are also still on the daily 5mg Cialis after several years. I can say that 3 years on with medication I am working good enough though I have wobbles sometimes if I am not mentally thinking right during the act. . On the bladder control, it was the pelvic floors and training my bladder that helped me.

Good luck with your recovery . Edie

Living life to the full, there is always someone worse of than yourself. Smile and get on with it.
User
Posted 19 Oct 2016 at 21:45
Update.

August PSA (5 months post-op) was 0.3. October one was 0.4, so at review with oncologist yesterday she said I need:

A PET scan to see if it shows a location - unlikely to, but worth a check, particularly to see if there are mets. Otherwise the assumption will be that it is where the prostate was removed, and radiotherapy will be directed there. They do 4 weeks of daily treatment, 5 days a week. She also recommends bicalutamide 150mg daily, with tamoxifen 20 mg once a week to reduce the chances of oestrogenic side effects. These to start after the scan.

I am going with her advice, and hoping to get the RT completed before we go on holiday at the end of Dec.

In contrast to before my initial treatment she was clear what she recommends and is keen to move quickly rather than taking lots of time.

She rather minimised the side effects of androgen blockade, but said if I don't get on with them I should stop them.

She said side effects of RT should settle within 6 months, if I get any.

ED still in full swing, so using alprostadil injections. Remain on Cialis 5 mg daily. Using pump most days. Continent.

Saw the lovely GP today, and he prescribed everything as I reported it. He reiterated that I should let him know if I need anything, including time off work.

Hate the idea of having to update my family and friends with all this disappointing news: I feel I am just bringing bad news, and being a source of negativity. I hadn't updated people re the August PSA for this reason, and to give me time to get my head around it ... or perhaps to ignore it for a bit longer.

It's a tenacious disease, mine, though I have not felt unwell at all.

Shall plod on ...

Henry

User
Posted 21 Jul 2017 at 16:59
Update.

After my PSA returning at the second postoperative test, having been undetectable initially, I had radiotherapy in Jan-Feb 2017 with testosterone blocker from Nov '16 to April '17. It was 0.4 before radiotherapy, 0.1 two months after radiotherapy, in April when I finished the bicalutamide. Today it was undetectable (< 0.1 where I go).

Though I am definitely pleased it is undetectable I have come not to hope for too much from this. I hope to string a few undetectable together now!

My recovery is going well otherwise. I do Kiegels probably 3 times a day on average and get tiny amounts of leak if I run, so I wear a pad when doing that and in the gym. I am still using injections to overcome ED, but there is more activity down there than there was at one time, so I am hoping the nerves are recovering in their myelin sheaths and that in the fullness of time my erections will be fuller and more reliable.

My breast tissue has slowly diminished since stopping bicalutamide.

I am still going to the LGBT group Metro Walnut in Greenwich every third Saturday in the month.

Next PSA in 3 month ...

Henry

User
Posted 26 Jul 2017 at 07:05

Great update - glad all seems to be going in the right direction

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

User
Posted 10 Nov 2017 at 18:07

Update:

My latest PSA was undetectable again.

This is my second undetectable result since radiotherapy in Jan/Feb this year.

I found I was anxious about the test for a shorter period beforehand this time around, but I had a bad night of little the day I was expecting to get a call from my CNS to let me know the result. In fact she did not call me on the agreed day and I left her a voicemail. She eventually called at midday the following day, which made for a very uncomfortable 24 hours. She forgot! Most irritating. I am normally terribly polite and would let someone off the hook, but when she apologised I just left the apology hanging rather than saying it was OK. It was not OK!

Plan is for another PSA in 3 months' time.

 

User
Posted 10 Nov 2017 at 18:55

Wow , just talking about you last night with my wife !! Glad you well and results good. Well done for seeing it through Henry and thanks for your help. Keep well

If life gives you lemons , then make lemonade

User
Posted 11 Nov 2017 at 00:13

Great news Henry - and very restrained of you

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

User
Posted 14 Feb 2018 at 08:07
Latest PSA undetectable and interval increased to 6 months. Yayyy!!
User
Posted 14 Feb 2018 at 10:09
Great news. It's a wonderful feeling isn't it. So pleased for you and long may it continue.
User
Posted 14 Feb 2018 at 10:39

Great news Henry and nice to see you still watching forum. Take care

If life gives you lemons , then make lemonade

User
Posted 09 Aug 2018 at 20:46

PSA undetectable again. Great news.

ED still there and unlikely to improve now that I am 2 years and 5 months post op. Caverject usage is far less soul destroying for me than I imagined it would be.

User
Posted 09 Aug 2018 at 21:25

Well done Henry - great news about the PSA and long may it continue. 

You seem pretty chilled about the ED situation as well.

All the best

Kevan 

User
Posted 09 Aug 2018 at 21:45
Lovely to hear from you and your stoic outlook. Don’t totally give up. I’ve had vast improvements from the 2 1/2 yr mark. I can’t believe anyone can cope with Caverject. The after pain was indescribable for me. Try some Invicorp25. You may be well amazed !!!

Best wishes Henry

If life gives you lemons , then make lemonade

User
Posted 09 Aug 2018 at 23:12
Hi Henry, good to see your update - stay happy 😃
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Dec 2018 at 09:29

Hi Henry and Everyone in the group,

Thanks very much for all your posts; I'm 48 and have recently been diagnosed, it is localized and the doctor said I'm a good candidate for Robotic Nerve-sparing Radical Prostatectomy. I surgery is scheduled for Jan 5, 2018.

I did speak to a few people who had been through surgery, most of them have been straight and older guys for whom sex at this age was not a priority. In India, most men don't get their PSA tested for prostate enlargement is considered an old man's issue and there is little awareness of Prostate Cancer.

I've made notes after reading all your posts; I wanted to know more about the Pump - is it necessary to start using it right away.

How does an orgasm feel? the intensity? 

Thanks again,

Vindci

User
Posted 18 Dec 2018 at 10:52
I was 55 when I had the op and I didn't think sex was that important until I wasn't getting any!! I had partial nerve sparing so it took a while to restore a "penetrative capability". Now I would say Orgasm is just like it was before, sometimes I just can't get there but that rarely happens these days and only adds to the intensity when it finally happens...

You don't need to pump until after the op but it wouldn't do any harm to get a feel for it before hand!

User
Posted 18 Dec 2018 at 11:47

Thanks for your reply Francij1. 

It feels good to know, I was very concerned. 

Is it important to use a Pump after the op, how does it help? I doubt if we even get one in India, is there an alternative?

 
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