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

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User
Posted 30 Mar 2016 at 12:02
I had a prostatectomy a week ago today at Medway Maritime Hospital which is the centre used for urology cancer services in West Kent. My main urology outpatient service is in Maidstone. (They have fab nurse consultants and we are all allocated to one.)

David and I have been together for 28 years. Last August we decided to send off for some blood test kits to take each other's blood for a health screen (we are both fit, health-concious psychiatrists). My PSA came back as raised at 9.0. I made an appointment with the GP who repeated it (8.3) and referred me for a cancer-related fast-track outpatient appointment at Maidstone. The doctor there felt a lump on my prostate and ordered a MRI, a TRUS biopsy, and a bone scan all of which I found less uncomfortable or difficult than I had expected.

At the appointment to give me my results I was told I had Gleason 4 + 3 on the right, confined to the prostate. We had read up about prostate cancer, so I was not surprised to be referred to the local surgeon who does prostatectomies and the oncologist who looks after radiotherapy (and hormone treatment, I guess). This needed treatment, as opposed to the active surveillance for lower-grade cancer that I had hoped for. Everyone told us there was time to make the best decision for us. It was a mixed blessing to have to chose, as opposed to being informed by an expert, what was the best next step. Only the surgeon came off the fence at this point, and he even said that he thought mine could have started breeching the capsule of the prostate because it was right on the periphery.

We had read about HIFU and were very keen to see if this was viable for me as it offered localised treatment of a lump of cancer rather than full-organ (radical) treatment, and hence avoid the incontinence associated with removing the sphincter round the urethra, and erectile dysfunction caused by removing the nerves supplying erection, not to mention the loss of semen due to the seminal glands coming away with the prostate and all those other bits. We went to see Prof E (who works at UCLH) privately, taking my MRI on a CD. He got my scan re-reported by the radiologists he works with and unfortunately my disease was too multifocal for very localised treatment. There was some on the left plus the lump on the right was too near the edge of the prostate. HIFU needs a margin of healthy prostate around the diseased part.

We went back to Maidstone and said we 'wanted' the prostatectomy. I allowed myself to acknowledge the advantages of surgery over HIFU: the cancer would be gone for good (with luck!).

The time from diagnosis to treatment allowed us to try to get our heads around what was coming up in terms of side effects from surgery. Our sex life has always been central in our relationship, and we are both very worried about losing that. The consensus is that stornger erections are necessary for anal than for vaginal penetration. If our sex life has gone in its previous form we will have to find ways to get around that, but it would be a challenge for us both to do the necessary communicating.

The central role of the prostate in men's sexual experience goes unmentioned. Prostate cancer is also not talked about as much as, or in the same tones as, say, breast cancer. Men with PC are losing something very dear to them with radical treatments. I am sure this realtes to the fact that men talk less abut feelings, and like to deal with solutions in one go. (I include myself.)

We have found out a lot about penile rehabilitation - the things you can do to maximize the chances of regaining erectile function and/or to optimize what the erections are like if/when they do return. Good signs for return of function are that I am relatively young, fit, with previously good erections, and the surgeon said he was able to do good nerve-sparing on the left during my operation.

We have invested in a bathmate (vacuum pump that uses water rather than air, which you can use in the bath or shower) and a viberect (a kind of double-headed dildo, like a tong, that delivers deep vibration to the penis, claiming to activate a reflex within the penis that can lead to erection without the connection to the spinal cord through nerves being in place). I need to wait for a bit more healing time after the operation before getting going with these, but I tried them before the operation (as advised!) to get used to them. The viberect is certainly very powerful when all the nerves are intact!

I went to a group held at the Metro Centre in Greenwich for LGBT men with prostate cancer (and their partners), and this was a fantastic find, because it was possible to talk about all ones thoughts and fears and hear others' advice/experience, all in language that one might not use elsewhere. David came to the second meeting I went to, and we will go back. It's called Metro Walnut.

Much of the literature about PC refers to female sexual partners, so one can feel invisible as a gay man. Also judging from some members of the group it can be easy to feel very uncertain about being treated with respect if you come out when receiving health services. Even if you do you might not want to 'talk dirty' with a health professional. I encourage everyone to do so, though: mostly they will be fine, and how else are they to learn if you stay quiet because of your fear?

I have found that things have gone smoothly since the operation in that the catheter is surprisingly difficult to feel and is not painful. I have needed to stay on the laxative I was given - I didn't poo until day 3 post-op, but apart from that I have stopped regular use of pain killers (apart from paracetamol in Lem-Sip I have used for a cold). I have been prescribed 5mg daily of ciallis (the viagra-like drug aimed at optimizing blood supply to the penis to keep it as healthy as possible while it isn't getting erect). Because I am mobile now I am thinking of stopping the TED stockings and Fragmin that they had advised I use for a month to prevent deep vein thrombosis.

I have to go to Maidstone Hospital tomorrow to have the catheter removed, so that will be the start of the next chapter: seeing how continent I am, plus some fiddling with my willy to see if there is any sign of life. (I know there won't be as the nerves are always injured at operation, but I shan't be able to resist!)

There is lots more I could say, but I will stop there for now. It is all in my personal 'prostate diary' on my iPad.

I look forward to hearing from others. Don't hesitate to ask questions!

Edited by member 30 Mar 2016 at 21:31  | Reason: Not specified

User
Posted 30 Mar 2016 at 12:02
I had a prostatectomy a week ago today at Medway Maritime Hospital which is the centre used for urology cancer services in West Kent. My main urology outpatient service is in Maidstone. (They have fab nurse consultants and we are all allocated to one.)

David and I have been together for 28 years. Last August we decided to send off for some blood test kits to take each other's blood for a health screen (we are both fit, health-concious psychiatrists). My PSA came back as raised at 9.0. I made an appointment with the GP who repeated it (8.3) and referred me for a cancer-related fast-track outpatient appointment at Maidstone. The doctor there felt a lump on my prostate and ordered a MRI, a TRUS biopsy, and a bone scan all of which I found less uncomfortable or difficult than I had expected.

At the appointment to give me my results I was told I had Gleason 4 + 3 on the right, confined to the prostate. We had read up about prostate cancer, so I was not surprised to be referred to the local surgeon who does prostatectomies and the oncologist who looks after radiotherapy (and hormone treatment, I guess). This needed treatment, as opposed to the active surveillance for lower-grade cancer that I had hoped for. Everyone told us there was time to make the best decision for us. It was a mixed blessing to have to chose, as opposed to being informed by an expert, what was the best next step. Only the surgeon came off the fence at this point, and he even said that he thought mine could have started breeching the capsule of the prostate because it was right on the periphery.

We had read about HIFU and were very keen to see if this was viable for me as it offered localised treatment of a lump of cancer rather than full-organ (radical) treatment, and hence avoid the incontinence associated with removing the sphincter round the urethra, and erectile dysfunction caused by removing the nerves supplying erection, not to mention the loss of semen due to the seminal glands coming away with the prostate and all those other bits. We went to see Prof E (who works at UCLH) privately, taking my MRI on a CD. He got my scan re-reported by the radiologists he works with and unfortunately my disease was too multifocal for very localised treatment. There was some on the left plus the lump on the right was too near the edge of the prostate. HIFU needs a margin of healthy prostate around the diseased part.

We went back to Maidstone and said we 'wanted' the prostatectomy. I allowed myself to acknowledge the advantages of surgery over HIFU: the cancer would be gone for good (with luck!).

The time from diagnosis to treatment allowed us to try to get our heads around what was coming up in terms of side effects from surgery. Our sex life has always been central in our relationship, and we are both very worried about losing that. The consensus is that stornger erections are necessary for anal than for vaginal penetration. If our sex life has gone in its previous form we will have to find ways to get around that, but it would be a challenge for us both to do the necessary communicating.

The central role of the prostate in men's sexual experience goes unmentioned. Prostate cancer is also not talked about as much as, or in the same tones as, say, breast cancer. Men with PC are losing something very dear to them with radical treatments. I am sure this realtes to the fact that men talk less abut feelings, and like to deal with solutions in one go. (I include myself.)

We have found out a lot about penile rehabilitation - the things you can do to maximize the chances of regaining erectile function and/or to optimize what the erections are like if/when they do return. Good signs for return of function are that I am relatively young, fit, with previously good erections, and the surgeon said he was able to do good nerve-sparing on the left during my operation.

We have invested in a bathmate (vacuum pump that uses water rather than air, which you can use in the bath or shower) and a viberect (a kind of double-headed dildo, like a tong, that delivers deep vibration to the penis, claiming to activate a reflex within the penis that can lead to erection without the connection to the spinal cord through nerves being in place). I need to wait for a bit more healing time after the operation before getting going with these, but I tried them before the operation (as advised!) to get used to them. The viberect is certainly very powerful when all the nerves are intact!

I went to a group held at the Metro Centre in Greenwich for LGBT men with prostate cancer (and their partners), and this was a fantastic find, because it was possible to talk about all ones thoughts and fears and hear others' advice/experience, all in language that one might not use elsewhere. David came to the second meeting I went to, and we will go back. It's called Metro Walnut.

Much of the literature about PC refers to female sexual partners, so one can feel invisible as a gay man. Also judging from some members of the group it can be easy to feel very uncertain about being treated with respect if you come out when receiving health services. Even if you do you might not want to 'talk dirty' with a health professional. I encourage everyone to do so, though: mostly they will be fine, and how else are they to learn if you stay quiet because of your fear?

I have found that things have gone smoothly since the operation in that the catheter is surprisingly difficult to feel and is not painful. I have needed to stay on the laxative I was given - I didn't poo until day 3 post-op, but apart from that I have stopped regular use of pain killers (apart from paracetamol in Lem-Sip I have used for a cold). I have been prescribed 5mg daily of ciallis (the viagra-like drug aimed at optimizing blood supply to the penis to keep it as healthy as possible while it isn't getting erect). Because I am mobile now I am thinking of stopping the TED stockings and Fragmin that they had advised I use for a month to prevent deep vein thrombosis.

I have to go to Maidstone Hospital tomorrow to have the catheter removed, so that will be the start of the next chapter: seeing how continent I am, plus some fiddling with my willy to see if there is any sign of life. (I know there won't be as the nerves are always injured at operation, but I shan't be able to resist!)

There is lots more I could say, but I will stop there for now. It is all in my personal 'prostate diary' on my iPad.

I look forward to hearing from others. Don't hesitate to ask questions!

Edited by member 30 Mar 2016 at 21:31  | Reason: Not specified

User
Posted 19 Oct 2016 at 22:45
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 30 Mar 2016 at 13:38

Hi, Johsan.
I note the thing about anonymity for healthcare workers - thanks.
Just trying not to react too sensitively to your second line, having posted on the gay and bisexual bit!
We need to be as inclusive and friendly as possible if we want to get gay and bisexual men, and indeed all men who have sex with men (MSM) feeling comfortable here. Hopefully those who can't relate can gain something, or else quietly toddle off to a section that suits them.

User
Posted 30 Mar 2016 at 15:11

Hi Henry,
we have a number of gay and bi men on the forum - some out and some not. All will recognise your comments regarding discussions with medical folk, not all of whom understand that the impact of PCa is different. My guess is that at least one of the not-out members will private message you when they see your thread.

One thing about your comments to Johsan. Some of us respond as soon as we see new members but we pick up your posts from the 'posts since your last visit' screen which means we don't always see which section is which. As you say, members that are uncomfortable can simply not look at this area and to be fair, we have had more disagreements about creating the section for 'young men' than any of the others :-)

If you haven't already found him, search for SeanXT on here - I think he was involved in setting up the first GBT PCa support group in Manchester.

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

User
Posted 18 Apr 2016 at 19:00

Hi Henry
Great post and refreshingly honest. I was only talking today about incontinence with Elaine. Whilst I was effectively dry from day one , it took months before I could travel far from a loo. The biggest step was wearing no pad at all and hoping for the best. You WILL get there in time.
Your comment on being open and honest and experimenting in the bedroom is something everyone should understand. It really is the key to making progress , and yes it can actually revive a flagging sex-life ironically.
I'm still very interested in the whole ED recovery thing , having been denied daily Cialis and told the evidence isn't firm. But I've had great help from the ED nurse and local GP. But after now 10 months of using the pump every day and getting a respectable erection , zero is happening naturally ( maybe a tiny tiny bit and I'm being a bit tough on myself ). I've tried all the tablets including the new Spedra at maximum ' event ' dose to no avail. And I was a fit healthy 48 year old with double nerve sparing. All very sad and despairing if I let myself think about it too much. But the injections do the trick if I'm honest , although very painful throbbing for ages after. All day in fact. It takes a fortnight before I'm willing to try again. I can only wish you both the best of luck , and here is to a set of good results soon Henry.
Chris

User
Posted 11 May 2016 at 22:31

2.5mg !! One quarter of a syringe !?? Blo***dy well done. 40 mg is only just doing it for me , and only for 1 1/2 hrs with intense pain after. Not entirely great or comfortable. I'm thinking of becoming a monk :-((

User
Posted 14 Feb 2018 at 08:07
Latest PSA undetectable and interval increased to 6 months. Yayyy!!
User
Posted 30 Mar 2016 at 15:13

PS you could remove Prof E's name before the moderators do!

PPS The bathmate looks okay but may be better to get a Somaerect or Farnhurst on the NHS if possible. NICE says you are entitled to this (although as with so many things, there is an ED postcode lottery in this country) so worth asking your nurse specialist or whoever prescribed the Cialis? The fact that you have Cialis already bodes well and suggests you are in the care of someone who really understands post-treatment penile rehab. I can't see that the pump would provide a long term solution to ED if you needed it - the problem with using the rings is that there is no firmness behind the ring to provide aim or direction :-( - but essential to keeping it healthy

Edited by member 30 Mar 2016 at 15:26  | Reason: Not specified

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

User
Posted 30 Mar 2016 at 15:58

A selection of Sean's posts that will then take you to various conversations with other members and links to other sources.

http://community.prostatecanceruk.org/default.aspx?g=profile&u=13026


Edited by member 30 Mar 2016 at 15:58  | Reason: Not specified

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

User
Posted 30 Mar 2016 at 19:40

Hi Henry and welcome
I'm really glad your operation went well and you are not in too much pain. Fingers crossed for continence. Unfortunately like the majority of men you will be plagued by ED , but it's not guaranteed so keep the faith. I'm 9 months on from surgery and 48 yrs old with double nerve sparing. However zero signs of life yet. I am trying everything and you are welcome to ask anything you want anytime. Presently getting success with injection therapy allowing reasonable vaginal penetration. No way on earth would anal be possible. It's amazing just how complex a man's erection process is , and how frustrating it is when you lose it , and how difficult it is to simulate natural sex by any other means. Like all of us you will adapt to a new you , and despite our frustrations I still feel I'm having more fun than many of my friends my age in unaffected relationships. Does get me down though. Properly down. But a challenge is good. I think many men ( most too proud to admit it ) are aware of the pleasure a prostate gland can give during sex . I suspect once very fully healed , things will still be good for you.
As Lyn says separate areas were created to encourage young , black or gay people to use the forum and seek help , and I thought it was a good idea to give those people privacy if they wanted it within those separate groups. What I didn't realise is that everyone can read those conversations from the " recent conversations" page that everyone uses as their home page. Seems utterly stupid to me and bad web design. Having said that , this forum is for every man ( and woman ) in the world to seek advice and help and support with their prostate cancer, whatever their age or sexuality or ethnicity. Sending best wishes on a speedy recovery.
Chris

PS Would be fascinated to hear of progress with the viberect device. I can afford one but not found much data or trials on its use.

Edited by member 30 Mar 2016 at 19:44  | Reason: Not specified

User
Posted 30 Mar 2016 at 23:45
Hi Henry,

Somebody else referred me to your very refreshing post. I rarely log on to PCUK's online community these days because when I did it never felt a welcoming place for anyone who wasn't straight. How good then to see there's now a section for gay and bisexual men, along with one for transgender women. I hope the old place really has changed and that it's not all just for show.

How right you are about feeling invisible in the world of prostate cancer as a gay man. Me too! My regular medical team are very supportive of both me and my partner but it took a long time and many very unsatisfactory consultations with heterocentric / heteronormative health professionals before I ended up with them. Whenever I encounter a new doctor or nurse I am forced to come out again because the assumption always made is that the man sitting in front of them is straight. Why are so many assumptions made by people who are supposed to be caring for us? Why don't they just ask? Invariably with someone new I end up having to explain things. As you quite rightly say, "how else are they to learn if you stay quiet because of your fear?" I decided to overcome that fear the day I was told my diagnosis as I figured cancer was scarier.

Really though, the medical profession has no excuse to be ignorant about how this disease impacts on us differently - the information exists but they just haven't bothered to read it.

Please let us know how things go when the catheter is removed. Don't be discouraged if there's some initial incontinence as hopefully that will not last long. The same goes for fiddling with your dick - the poor thing's had a shock so give it a chance and it might yet perk up. When you do get sexually active again (after allowing time to heal up inside, of course) you'll find things different from before whether you are a top or a bottom, but sex can still be very enjoyable without a prostate.

Best Wishes

Jim

User
Posted 31 Mar 2016 at 01:52

Hi Jay, good to see you posting although sad that you hadn't felt welcome last year. Did you get your second bash at RT?

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

User
Posted 31 Mar 2016 at 12:04

Hi jaypeeca

I've only just come across your blog  https://rantfromthesuburbs.wordpress.com

and great writing it is too. A very human account of life. Thanks. 

 

 

 

Edited by member 31 Mar 2016 at 12:05  | Reason: Not specified

User
Posted 31 Mar 2016 at 14:27
Hi Henry

Others have said a lot about how we regulars access latest posts from recent conversations tab, also the fact that the new groups are not closed user groups. If I am honest that would mean that people would not necessarily get feedback or support from the wider audience. There are many people out there who have a truly astounding knowledge of PCa and all aspects of dealing with it, some like me, don't have that incredible knowledge but have had their lives completely changed by it.

Having had your surgery and hopefully an easy and uncomplicated catheter removal you are embarking on the next big stage of your recovery. Sounds to me like you and your partner have given all of this much thought, research and very proactive organisation. You have talked a bit about planning for penile recovery, I hope you have also prepared yourself for any incontinenece issues as well, even if they are minor and not prolonged. Tighter underwear, initially a small selection of disposable pads etc.

Anyway I guess I really just wanted to post to say Hi and welcome to the forum.

My best wishes

xx

Mo

User
Posted 03 Apr 2016 at 09:44
Hi Henry just wanted to say hello. As others have said it doesn't matter we are all in the same boat dealing with this horrible disease and it's impact. I hope you are doing ok and that your partner is taking good card of you. Jx
User
Posted 04 Apr 2016 at 14:52

Chinos??? Progress indeed - John lived in black M&S sweatpants with a drawstring waist for weeks!

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

User
Posted 04 Apr 2016 at 15:23

H

I was lucky after my RARP, 4 days post catheter I was almost dry, a few weeks and totally dry. Lots of PFEs, do not "go" just in case,try to stretch out the time between visits. I Stood in the shower ( without the water on) with a pad and under pants on then let my bladder go, the experiance of how well a pad worked gave me the confidence too hold on a bit longer. A tenna2 with absorb 840 MLS initially then lose about 90 ml, too much time on my hands.

There could still be debris in the plumbing that is slowing the flow. As one of our members said the Yorkshire puddings never tasted the same after using the measuring jug.

Following a stricture I had a second bout of incontinence that has lasted alot longer but is down to a few mls some days dry other days. I was advised to stop thinking about the incontinence and put it to the back of my mind.I am sure with your professional experience you will understand that.

I also experienced thinking I had leaked alot only to find it was contained in the foreskin. During my second bout of incontinence I put about 10 sheets of loo roll folded in a nappy liner between the pad and penis, after a small leak I would change the liner and loo roll so I was not walking round with a soiled pad. I know they are supposed to have odour control, just something in my head. Do not use loo roll on its own.

Hope your recovery goes well.

Thanks Chris

User
Posted 04 Apr 2016 at 16:36
I came off the catheter 31.03.16 too.

My physiotherapist gave me a sheet of dos and donts for the period after removal of the catheter... one dont was excessive alcohol and caffeine intake as it can cause irritations to the bladder..

Just me.. but I have decided on leaving both alone for a while.

User
Posted 04 Apr 2016 at 17:04
Hi Henry,

Thanks for the update. Things sound very positive for you.

Well done on your solo orgasm. You're a braver man than me. I waited a lot longer after surgery before my first attempt. Two years post surgery and my sensation is still a shadow of what it was. I don't think it's going to improve much, but I'll keep on trying just to see ....

Best wishes

Jim

User
Posted 10 Apr 2016 at 01:02

I hate to sound like a spoilsport but three weeks post op might be a bit early for sit-ups - have you checked with the surgeon? The last thing you need is a hernia; unfortunately you are now at higher risk. It's all well being very fit - a lot of people here are impressively so - but this is still major surgery. It took John about 10 weeks to get back to the gym, a long drawn-out 4 months before he was on a rugby pitch, and the bike was chained up for 7 months :-(

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

User
Posted 18 Apr 2016 at 18:31

An update.

It is two days under 4 weeks since my laparoscopic RP.
I am feeling proud today that I went to meet a friend for lunch in London - driving to the train station, doing the train journey, tubing to Marylebone, having said lunch and not talking about my condition all the time, and making it back with very little leakage.
I have a few things on this week aimed at pushing myself a little bit so that I feel confident about managing the incontinence when I get back to work in a week's time. As well as managing the physical logistics (including having a disposable nappy bag with a spare pad and spare pair of undies in my bag!), I want to be able to have sufficient confidence that my mind is not having to work on the incontinence so much that I can't work effectively. There are two parts to that: trying to leak as little as possible, of course, but also accepting that I will leak and keeping a poker face when it happens.
As I have mentioned elsewhere a pad that has more capacity than I am expecting to need and small pants hoiked up unfashionably high help me feel things are all trussed up and contained.

My previous issue with recurrent reduced flow when I stopped ibuprofen seems to have resolved after a week on 400mg three times a day. I have had no problem with this since stopping it again from 16th April.

ED remains as expected but we have managed to enjoy some sex. I can recommend to those with ED wanting to have penetrative sex the 'penis extender'. Google 'Clearly Ample', but many makes are available. This is a hollow silicone transparent dildo, with a ring at its base. You put your balls through the ring so the toy is fixed around the top of your scrotum. Your willy then goes into the hollow of the dildo, and off you go, applying lube as required.
I was so pleased to be able to contribute to sex to climax for David. We had become worried that ED was an insurmountable nightmare side-effect. We did well to overcome our self-consciousness about using something like this together, though we each have occasionally played with sex toys, albeit almost exclusively solo.
Perhaps the condition challenging one to make this kind of change is one of the silver linings?
I would encourage people with ED and their sexual partners to try to move towards feared strange stuff like this rather than turning away from it, if you can, and if it is important to you that you maintain / regain a sex life. The first step is perhaps to look into it yourself, then let your partner know you are interested in experimenting.

On 20th I have the appointment with the CNS who specialises in penile rehabilitation. I believe the focus might be on getting erections 3 times a week to promote the kind of blood supply to the penis that prevents it fibrosing. The PGE 5 drugs need the nerves to be working, but I understand they might see if I am 'a responder' to them. If I am not I guess I will be offered alprostadil as gel (Vitaros), intraurethral pellet/stick (Muse) or intracavernosal injection (Caverject).

A YouTube video from an Australia urology conference said the pump doesn't really get the oxygenated arterial blood that one is after into the penis, as happens in an erection. It tends to draw in venous blood and keep it there, so it might help to expand the penis, but is not quite what we are after, perhaps.

The penile rehab literature does seem to have a consensus that it is 3 erections a week that are required so the old decision, from when viagra came onto the UK market, that 4 erections a month were sufficient for those with ED does not apply to us (not that it was a great decision in the first place). I am all geared up for making sure I am offered enough drugs for the three times a week, not that I have had any reason at all to expect anything other than willingness to prescribe me all the treatments I need for my cancer and the effects of its treatment.

I think my surgeon sees himself as relatively knowledgeable about penile rehabilitation. His website for private practice says he came across it in New York, if you please! (I think the French invented it, though. Just to keep stereotypes alive.)

Still no pathology! My fab CNS regularly emails to tell me she has checked and it's not there, but it really is taking a bit long. Shear volume of work divided by numbers of people doing the job, I assume ...

Henry

User
Posted 19 Apr 2016 at 00:50

Henry, I love your optimism but fear you are either going to build yourself up for a terrible disappointment or prove to the rest of us that the old boys' network still has power.

Regardless of that, your focus on getting 3 erections per week might not be attainable. What are you going to do if you turn out to be one of those for whom the tablets, gels and injections don't work? I would have thought the existing advice - to get blood circulating around the nerve bundles and into the cavernosa in any way you can, at least 3 times a day, would still be the priority? The research from Australia seems counter-intuitive to me - any expansion is going to be preferable to no expansion as the cells die so quickly.

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

User
Posted 20 Apr 2016 at 18:02

Hi Henry
Sounds like a good appt. You are doing everything you can for recovery which is exactly how I have been from day 1 , having not really wanted the op in the first place. If you don't chase erectile recovery then it just probably won't happen. I only used the pump from 8 weeks on. The bands are very very tight but strangely don't hurt. To be honest you end up with a reasonable erection that has zero base to it whatsoever. It turns blue , goes cold , and loses sensation. I used to use it for sex but now purely for daily exercise. And yes you are right - I'm totally losing interest now at 10 months post op at 48 with double nerve spare. Yes recovery can take ages but you do lose heart after all this time when you have put so much effort in. At least I'm retired and can always find a window of opportunity. It must be difficult when you work and get home and have dinner and maybe kids etc to find the time. All I can say is that without injections I'd be doing my nut by now. They are as close to the real thing I might get. The injection itself is nigh on painless but for me myself the awful pain for the whole day post usage is enough to ensure that only 1 ever gets used per week. Quite simply , what was a bountiful love life pre-op has simply evaporated. On every level mental and physical. But I think we are ok mostly , apart from lifetime treatment now and forever uncertainty.
I know you shouldn't have to do this , but you can actually phone iMedicare direct and get a rep round and they will size you , give you prescription codes and everything. Shame you can't right your own prescription Henry ........ And not enormously expensive if you just want to crack on.
Anyway all the best with your endeavours , may the incontinence dry up , and you be undetectable and EF return to normal.
Chris

User
Posted 20 Apr 2016 at 21:29

Brilliant news henry - your ED nurse sounds great. John was supposedly using the pump 3 times on waking, 3 times when he got home from work and 3 more at bedtime. Interest waxed and waned, depending on how up or low he was feeling.

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

User
Posted 11 May 2016 at 22:41

Sorry this was for Chris oops, I'm enjoying a glass or two, yes two, of good red wine this evening, my down time.hence my slack responses.

User
Posted 11 May 2016 at 23:21
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 06:06  | Reason: Not specified

User
Posted 13 May 2016 at 18:11

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 21 Jul 2017 at 17:59
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 08:05

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 18:55

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

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 09 Aug 2018 at 22:25

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 22:45
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

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

Show Most Thanked Posts
User
Posted 30 Mar 2016 at 12:28

Just to welcome you to the site Henry (and partner)

We are a mixed bunch on here and whilst a lot of our men will not be able to relate to the gay aspect of your post they will fully understand the need and desire to get an intimate life back on track as soon as possible.

As far as the content of your post there is only one thing I think I have to point out and that is there is a site rule that says we are not supposed to name any doctors (Hospitals are fine) so it might be best to just say "Prof E" or Dr Y.

I hope one of our men will be along to help on the ED/Pump/Cialis front.
I know there have been lots of discussions on this

We are a very friendly group with a lot of information available through personal experience.

If you want to follow somebody's story then click on their picture and you can read their profile

In the meantime,  All the best

Edited by member 30 Mar 2016 at 17:14  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 30 Mar 2016 at 13:38

Hi, Johsan.
I note the thing about anonymity for healthcare workers - thanks.
Just trying not to react too sensitively to your second line, having posted on the gay and bisexual bit!
We need to be as inclusive and friendly as possible if we want to get gay and bisexual men, and indeed all men who have sex with men (MSM) feeling comfortable here. Hopefully those who can't relate can gain something, or else quietly toddle off to a section that suits them.

User
Posted 30 Mar 2016 at 15:11

Hi Henry,
we have a number of gay and bi men on the forum - some out and some not. All will recognise your comments regarding discussions with medical folk, not all of whom understand that the impact of PCa is different. My guess is that at least one of the not-out members will private message you when they see your thread.

One thing about your comments to Johsan. Some of us respond as soon as we see new members but we pick up your posts from the 'posts since your last visit' screen which means we don't always see which section is which. As you say, members that are uncomfortable can simply not look at this area and to be fair, we have had more disagreements about creating the section for 'young men' than any of the others :-)

If you haven't already found him, search for SeanXT on here - I think he was involved in setting up the first GBT PCa support group in Manchester.

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

User
Posted 30 Mar 2016 at 15:13

PS you could remove Prof E's name before the moderators do!

PPS The bathmate looks okay but may be better to get a Somaerect or Farnhurst on the NHS if possible. NICE says you are entitled to this (although as with so many things, there is an ED postcode lottery in this country) so worth asking your nurse specialist or whoever prescribed the Cialis? The fact that you have Cialis already bodes well and suggests you are in the care of someone who really understands post-treatment penile rehab. I can't see that the pump would provide a long term solution to ED if you needed it - the problem with using the rings is that there is no firmness behind the ring to provide aim or direction :-( - but essential to keeping it healthy

Edited by member 30 Mar 2016 at 15:26  | Reason: Not specified

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

User
Posted 30 Mar 2016 at 15:58

A selection of Sean's posts that will then take you to various conversations with other members and links to other sources.

http://community.prostatecanceruk.org/default.aspx?g=profile&u=13026


Edited by member 30 Mar 2016 at 15:58  | Reason: Not specified

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

User
Posted 30 Mar 2016 at 19:40

Hi Henry and welcome
I'm really glad your operation went well and you are not in too much pain. Fingers crossed for continence. Unfortunately like the majority of men you will be plagued by ED , but it's not guaranteed so keep the faith. I'm 9 months on from surgery and 48 yrs old with double nerve sparing. However zero signs of life yet. I am trying everything and you are welcome to ask anything you want anytime. Presently getting success with injection therapy allowing reasonable vaginal penetration. No way on earth would anal be possible. It's amazing just how complex a man's erection process is , and how frustrating it is when you lose it , and how difficult it is to simulate natural sex by any other means. Like all of us you will adapt to a new you , and despite our frustrations I still feel I'm having more fun than many of my friends my age in unaffected relationships. Does get me down though. Properly down. But a challenge is good. I think many men ( most too proud to admit it ) are aware of the pleasure a prostate gland can give during sex . I suspect once very fully healed , things will still be good for you.
As Lyn says separate areas were created to encourage young , black or gay people to use the forum and seek help , and I thought it was a good idea to give those people privacy if they wanted it within those separate groups. What I didn't realise is that everyone can read those conversations from the " recent conversations" page that everyone uses as their home page. Seems utterly stupid to me and bad web design. Having said that , this forum is for every man ( and woman ) in the world to seek advice and help and support with their prostate cancer, whatever their age or sexuality or ethnicity. Sending best wishes on a speedy recovery.
Chris

PS Would be fascinated to hear of progress with the viberect device. I can afford one but not found much data or trials on its use.

Edited by member 30 Mar 2016 at 19:44  | Reason: Not specified

User
Posted 30 Mar 2016 at 21:12

Thanks for you posts!

User
Posted 30 Mar 2016 at 22:46
Hi Henry,

I was one of the people rightly or wrongly that opposed a seperate section for Gay, young or Black members on the forum. My reasoning is that we are all people affected by PCa as a partner of a Black man I don't want to have a seperate section to me that just puts a wall up. It seperates and makes an us and them mentallity.

so it's a hi from me, glad that you have found this site but sad that the circumstances that you needed to find us.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Mar 2016 at 23:45
Hi Henry,

Somebody else referred me to your very refreshing post. I rarely log on to PCUK's online community these days because when I did it never felt a welcoming place for anyone who wasn't straight. How good then to see there's now a section for gay and bisexual men, along with one for transgender women. I hope the old place really has changed and that it's not all just for show.

How right you are about feeling invisible in the world of prostate cancer as a gay man. Me too! My regular medical team are very supportive of both me and my partner but it took a long time and many very unsatisfactory consultations with heterocentric / heteronormative health professionals before I ended up with them. Whenever I encounter a new doctor or nurse I am forced to come out again because the assumption always made is that the man sitting in front of them is straight. Why are so many assumptions made by people who are supposed to be caring for us? Why don't they just ask? Invariably with someone new I end up having to explain things. As you quite rightly say, "how else are they to learn if you stay quiet because of your fear?" I decided to overcome that fear the day I was told my diagnosis as I figured cancer was scarier.

Really though, the medical profession has no excuse to be ignorant about how this disease impacts on us differently - the information exists but they just haven't bothered to read it.

Please let us know how things go when the catheter is removed. Don't be discouraged if there's some initial incontinence as hopefully that will not last long. The same goes for fiddling with your dick - the poor thing's had a shock so give it a chance and it might yet perk up. When you do get sexually active again (after allowing time to heal up inside, of course) you'll find things different from before whether you are a top or a bottom, but sex can still be very enjoyable without a prostate.

Best Wishes

Jim

User
Posted 31 Mar 2016 at 01:52

Hi Jay, good to see you posting although sad that you hadn't felt welcome last year. Did you get your second bash at RT?

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

User
Posted 31 Mar 2016 at 10:04

Hi Lyn,

Yes I did thanks. 15 more sessions in the end. I was told afterwards that it would not change the prognosis but would "hopefully delay the time when we have to try something else".

Currently awaiting the result of my latest PSA test, which was done yesterday, so ever so slightly stressed out.

Jim

User
Posted 31 Mar 2016 at 12:04

Hi jaypeeca

I've only just come across your blog  https://rantfromthesuburbs.wordpress.com

and great writing it is too. A very human account of life. Thanks. 

 

 

 

Edited by member 31 Mar 2016 at 12:05  | Reason: Not specified

User
Posted 31 Mar 2016 at 12:56

Cheers walnut55

User
Posted 31 Mar 2016 at 14:27
Hi Henry

Others have said a lot about how we regulars access latest posts from recent conversations tab, also the fact that the new groups are not closed user groups. If I am honest that would mean that people would not necessarily get feedback or support from the wider audience. There are many people out there who have a truly astounding knowledge of PCa and all aspects of dealing with it, some like me, don't have that incredible knowledge but have had their lives completely changed by it.

Having had your surgery and hopefully an easy and uncomplicated catheter removal you are embarking on the next big stage of your recovery. Sounds to me like you and your partner have given all of this much thought, research and very proactive organisation. You have talked a bit about planning for penile recovery, I hope you have also prepared yourself for any incontinenece issues as well, even if they are minor and not prolonged. Tighter underwear, initially a small selection of disposable pads etc.

Anyway I guess I really just wanted to post to say Hi and welcome to the forum.

My best wishes

xx

Mo

User
Posted 02 Apr 2016 at 09:02
Hi Henry,

I wondered how you were doing since the catheter was removed?

Hope you're making good progress!

How are you feeling?

Jim

User
Posted 03 Apr 2016 at 09:44
Hi Henry just wanted to say hello. As others have said it doesn't matter we are all in the same boat dealing with this horrible disease and it's impact. I hope you are doing ok and that your partner is taking good card of you. Jx
User
Posted 04 Apr 2016 at 13:50

Update:

My 'trial without catheter' went OK on 31.3.2016. The shock of leaking soon began to feel familiar, and as I moved around the hospital a bit I tried to develop my poker-face so people saw less of my reaction to the leaking.
On the evening of Friday 1st I noticed my flow-rate was much reduced when I was peeing. I worried that my bladder had gone all weak, or something, but I could definitely feel it contracting. I started recording fluid intake and output (peeing into a measuring jug) and this showed I was peeing plenty of volume. I concluded that my urethra must have been narrowed. It was too late to speak to a nurse from my service, to see if I should get onto antibiotics, so I decided to start back on my anti-inflammatory pain killers (paracetamol and ibuprofen) in the hope that this would reduce any swelling. Thankfully the flow rate improved over Saturday. In fact the leaking was a bit worse as a result.
I had been given a pot for an MSU sample to give to the GP surgery this morning, so that will show if there is anything unexpected ...

I am gradually getting used to not being fully continent of urine.
I am most likely to get a leak when on my feet, and get hardly any when seated, and none when in bed.
Another risk-factor seems to be alcohol. Getting tipsy seems to disrupt the continued background mental effort to stay dry, somehow. I had lots of wine last night and found a very heavy pad at bedtime.
For me each leak is like a urethra-full that gets pumped out - hardly enough to come out of my foreskin, as it were. At first it felt as if a lot was emerging, but I think the oddity of the experience means that a little urine leaking feels like a lot.
The likelihood and size of the leak seems to be proportional to how much I open my legs when walking, i.e. the stride-length, and to how much I am off-centre, for instance if I am leaning forward or if I twist to do something.
It really helps to engage the pelvic floor before getting up. Also, when standing, if I lift the front of my pelvis up (bum tucked under) I seem to be less likely to leak. So indoors I shuffle around middle-first!
I have found it useful to try and accept that I am leaking, as this reduces the sense of failure each time I leak. My natural tendency is to groan at myself a bit every time I feel that pulse pushing out another few mls.
I am using some Tena pads for men - medium size. These have a huge capacity: one fell in the loo and I couldn't believe how much water it absorbed. It also felt very dry when I fished it out: they keep the wet off the skin well. I would now recommend someone unfamiliar with pads to muck about with one and some water to get to know them.
This all means that with a pad in I am very confident I am not going to have an accident involving wetness coming/showing through. Tightish undies keep the pad in contact with my penis, while baggy trousers (chinos rather than jeans in my case) avoid pressure on my bladder.

I have ordered some smaller pads - one is called a 'shield' - in the hope that I will be able to move on to them in due course.

We managed a sedate visit to a nearby garden on 2.4.2016. We wandered around it then had tea and cake in their tea shop. It was weird to know I was leaking a bit as we walked and as I ordered tea and chose a cake. It reminds me that you never know what people might be going through, so we should all just slow down, cut others some slack, and give people the benefit of the doubt. These improvements in how one behaves are a potential silver lining to this cloud.

I am picturing going back to work when my month off is up and dealing with this. I would hope the leaking will be less by then. I have been told to expect months until dryness, though, so I am gearing up to be patient.

Lastly - I enjoyed a little solo dry orgasm last night. Again: weird, of course, but I am quite pleased with how little the sensation in my penis feels changed. There was no sign of an erection, as expected (but nonetheless hoped for!) however I am chuffed that I now know what this feels like. Since I don't leak when lying, some sex seems more possible now too ...

User
Posted 04 Apr 2016 at 14:52

Chinos??? Progress indeed - John lived in black M&S sweatpants with a drawstring waist for weeks!

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

User
Posted 04 Apr 2016 at 15:23

H

I was lucky after my RARP, 4 days post catheter I was almost dry, a few weeks and totally dry. Lots of PFEs, do not "go" just in case,try to stretch out the time between visits. I Stood in the shower ( without the water on) with a pad and under pants on then let my bladder go, the experiance of how well a pad worked gave me the confidence too hold on a bit longer. A tenna2 with absorb 840 MLS initially then lose about 90 ml, too much time on my hands.

There could still be debris in the plumbing that is slowing the flow. As one of our members said the Yorkshire puddings never tasted the same after using the measuring jug.

Following a stricture I had a second bout of incontinence that has lasted alot longer but is down to a few mls some days dry other days. I was advised to stop thinking about the incontinence and put it to the back of my mind.I am sure with your professional experience you will understand that.

I also experienced thinking I had leaked alot only to find it was contained in the foreskin. During my second bout of incontinence I put about 10 sheets of loo roll folded in a nappy liner between the pad and penis, after a small leak I would change the liner and loo roll so I was not walking round with a soiled pad. I know they are supposed to have odour control, just something in my head. Do not use loo roll on its own.

Hope your recovery goes well.

Thanks Chris

User
Posted 04 Apr 2016 at 16:36
I came off the catheter 31.03.16 too.

My physiotherapist gave me a sheet of dos and donts for the period after removal of the catheter... one dont was excessive alcohol and caffeine intake as it can cause irritations to the bladder..

Just me.. but I have decided on leaving both alone for a while.

User
Posted 04 Apr 2016 at 17:04
Hi Henry,

Thanks for the update. Things sound very positive for you.

Well done on your solo orgasm. You're a braver man than me. I waited a lot longer after surgery before my first attempt. Two years post surgery and my sensation is still a shadow of what it was. I don't think it's going to improve much, but I'll keep on trying just to see ....

Best wishes

Jim

User
Posted 09 Apr 2016 at 15:59

Thanks Chris, Jay, KRO and everyone for sharing.
My named nurse thought my hypothesis about the reduced flow and urethral goings on was sound, and advised continuing regular ibuprofen for now. This has returned the flow-rate to what it has been since the op.
Chris - thanks for the tips. Such a good idea to do your shower thing: that is what is known as 'flooding therapy'! I am doggedly ignoring the leaks, if that is not a contradiction in terms, and I have started to avoid going to the loo 'just in case' and letting the bladder really fill.
KRO - a physio! Well done for stopping alcohol. I really enjoy wine, and have decided not to go without it, but I am having less.

The incontinence is improving and I am using Boots 'shields' which are for quite light leakage. I might have to go back to something more substantial, particularly if the amount that comes out if I walk with any purpose doesn't improve. In a 40 minute walk to the post box and back my pelvic floor seems to tire after half an hour or so. I am doing my pelvic exercises, of course. I have also started some sit-ups and squats each day. (I am used to running and going to the gym quite regularly, usually.) I have also started the vacuum pump in the bath.

I shall re-follow this conversation as I don't seem to have been getting notifications for posts. Apologies for the slow response from me!

User
Posted 10 Apr 2016 at 01:02

I hate to sound like a spoilsport but three weeks post op might be a bit early for sit-ups - have you checked with the surgeon? The last thing you need is a hernia; unfortunately you are now at higher risk. It's all well being very fit - a lot of people here are impressively so - but this is still major surgery. It took John about 10 weeks to get back to the gym, a long drawn-out 4 months before he was on a rugby pitch, and the bike was chained up for 7 months :-(

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

User
Posted 18 Apr 2016 at 18:31

An update.

It is two days under 4 weeks since my laparoscopic RP.
I am feeling proud today that I went to meet a friend for lunch in London - driving to the train station, doing the train journey, tubing to Marylebone, having said lunch and not talking about my condition all the time, and making it back with very little leakage.
I have a few things on this week aimed at pushing myself a little bit so that I feel confident about managing the incontinence when I get back to work in a week's time. As well as managing the physical logistics (including having a disposable nappy bag with a spare pad and spare pair of undies in my bag!), I want to be able to have sufficient confidence that my mind is not having to work on the incontinence so much that I can't work effectively. There are two parts to that: trying to leak as little as possible, of course, but also accepting that I will leak and keeping a poker face when it happens.
As I have mentioned elsewhere a pad that has more capacity than I am expecting to need and small pants hoiked up unfashionably high help me feel things are all trussed up and contained.

My previous issue with recurrent reduced flow when I stopped ibuprofen seems to have resolved after a week on 400mg three times a day. I have had no problem with this since stopping it again from 16th April.

ED remains as expected but we have managed to enjoy some sex. I can recommend to those with ED wanting to have penetrative sex the 'penis extender'. Google 'Clearly Ample', but many makes are available. This is a hollow silicone transparent dildo, with a ring at its base. You put your balls through the ring so the toy is fixed around the top of your scrotum. Your willy then goes into the hollow of the dildo, and off you go, applying lube as required.
I was so pleased to be able to contribute to sex to climax for David. We had become worried that ED was an insurmountable nightmare side-effect. We did well to overcome our self-consciousness about using something like this together, though we each have occasionally played with sex toys, albeit almost exclusively solo.
Perhaps the condition challenging one to make this kind of change is one of the silver linings?
I would encourage people with ED and their sexual partners to try to move towards feared strange stuff like this rather than turning away from it, if you can, and if it is important to you that you maintain / regain a sex life. The first step is perhaps to look into it yourself, then let your partner know you are interested in experimenting.

On 20th I have the appointment with the CNS who specialises in penile rehabilitation. I believe the focus might be on getting erections 3 times a week to promote the kind of blood supply to the penis that prevents it fibrosing. The PGE 5 drugs need the nerves to be working, but I understand they might see if I am 'a responder' to them. If I am not I guess I will be offered alprostadil as gel (Vitaros), intraurethral pellet/stick (Muse) or intracavernosal injection (Caverject).

A YouTube video from an Australia urology conference said the pump doesn't really get the oxygenated arterial blood that one is after into the penis, as happens in an erection. It tends to draw in venous blood and keep it there, so it might help to expand the penis, but is not quite what we are after, perhaps.

The penile rehab literature does seem to have a consensus that it is 3 erections a week that are required so the old decision, from when viagra came onto the UK market, that 4 erections a month were sufficient for those with ED does not apply to us (not that it was a great decision in the first place). I am all geared up for making sure I am offered enough drugs for the three times a week, not that I have had any reason at all to expect anything other than willingness to prescribe me all the treatments I need for my cancer and the effects of its treatment.

I think my surgeon sees himself as relatively knowledgeable about penile rehabilitation. His website for private practice says he came across it in New York, if you please! (I think the French invented it, though. Just to keep stereotypes alive.)

Still no pathology! My fab CNS regularly emails to tell me she has checked and it's not there, but it really is taking a bit long. Shear volume of work divided by numbers of people doing the job, I assume ...

Henry

User
Posted 18 Apr 2016 at 19:00

Hi Henry
Great post and refreshingly honest. I was only talking today about incontinence with Elaine. Whilst I was effectively dry from day one , it took months before I could travel far from a loo. The biggest step was wearing no pad at all and hoping for the best. You WILL get there in time.
Your comment on being open and honest and experimenting in the bedroom is something everyone should understand. It really is the key to making progress , and yes it can actually revive a flagging sex-life ironically.
I'm still very interested in the whole ED recovery thing , having been denied daily Cialis and told the evidence isn't firm. But I've had great help from the ED nurse and local GP. But after now 10 months of using the pump every day and getting a respectable erection , zero is happening naturally ( maybe a tiny tiny bit and I'm being a bit tough on myself ). I've tried all the tablets including the new Spedra at maximum ' event ' dose to no avail. And I was a fit healthy 48 year old with double nerve sparing. All very sad and despairing if I let myself think about it too much. But the injections do the trick if I'm honest , although very painful throbbing for ages after. All day in fact. It takes a fortnight before I'm willing to try again. I can only wish you both the best of luck , and here is to a set of good results soon Henry.
Chris

User
Posted 18 Apr 2016 at 19:01

Great to hear things  are moving along for you Henry.

Interesting findings re; the venous filling induced by the vacuum devices. I will be popping down to my GP this week to see about obtaining one. 

User
Posted 19 Apr 2016 at 00:50

Henry, I love your optimism but fear you are either going to build yourself up for a terrible disappointment or prove to the rest of us that the old boys' network still has power.

Regardless of that, your focus on getting 3 erections per week might not be attainable. What are you going to do if you turn out to be one of those for whom the tablets, gels and injections don't work? I would have thought the existing advice - to get blood circulating around the nerve bundles and into the cavernosa in any way you can, at least 3 times a day, would still be the priority? The research from Australia seems counter-intuitive to me - any expansion is going to be preferable to no expansion as the cells die so quickly.

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

User
Posted 20 Apr 2016 at 16:34

I had the appointment with the CNS who specialises in penile rehab today.
It was more of a general introduction to the issues than cracking on with action. I guess she deals with all sorts, and hadn't read my mind before our meeting, so the pace seemed slowish to me!
She began by being fairly pessimistic about how things might go for someone who had nerve-sparing on one side (my lump of 4+3 was near the edge of my prostate on the right).
She is more positive about pumps than I was in my post earlier in this conversation. She says getting expansion with pumps and keeping it there for a while is good for avoiding loss of size. She had a somaerect that she showed me. I have to be booked into a 'well man clinic' to be shown how to use it and to find out what the right size is for me. Charming! No room for false modesty in this process, is there?
Then I get my GP to prescribe it.
The band that goes on the base of the penis looked like it will feel really tight when on!
Next appointment at said well man clinic is 28th June. I'm going to have to slow down to their pace. I shall use the Bathmate till then.

She hadn't heard much about Viberect, but I fancy using that too.
It is going to need some planning to religiously set aside time for this, which I can do happily. I worry I might lose interest in it all, though. I know one has to persevere, often for months, and that there is no guarantee. I imagine interest, and devotion to practise/training might flag n the absence of results. And that's without hormone therapy or radiotherapy (which I hope - let us pray - not to need...) causing me side effects.

For alprostadil her preference is to get to injections, basically. She sees the gel/cream (Vitaros) as too small a dose for ED so soon after prostatectomy, and similarly she finds the intraurethral application (MUSE) doesn't work for a lot of people. So they like to get onto injecting if the patient is up for it. (Other treatments might work later, if there is a degree of recovery of funtion). I am paraphrasing her - she was very balanced and gave me choices +++.
This is entirely in keeping with my position at the moment: I am keen to get erections in whatever way necessary, both for penile rehab and for sex. I don't feel spooked by the idea of injecting, so I can try it and see if it suits me (i.e. is effective and doesn't have intolerable side effects for me). I have an appointment in three weeks, when she will show me how to do it and she will inject the lowest does (2.5 mg?) into me. After that I can inject myself at home, titrating the dose up as necessary.

My own lovely CNS was at the unit today. There is still no result for my pathology! Also the consultant isn't there at the clinic I am due to be seen in tomorrow. I shall still go to that appointment, then judge whether I want to ask for an appt with Mr D himself, particularly once the pathology result is in. My CNS is going to tell me about the pathology when it comes out, in any case.

The incontinence continues to improve. I went to this appointment and left some cardboard at the household recycling centre (dump) and there was next to no leakage.

Henry

User
Posted 20 Apr 2016 at 18:02

Hi Henry
Sounds like a good appt. You are doing everything you can for recovery which is exactly how I have been from day 1 , having not really wanted the op in the first place. If you don't chase erectile recovery then it just probably won't happen. I only used the pump from 8 weeks on. The bands are very very tight but strangely don't hurt. To be honest you end up with a reasonable erection that has zero base to it whatsoever. It turns blue , goes cold , and loses sensation. I used to use it for sex but now purely for daily exercise. And yes you are right - I'm totally losing interest now at 10 months post op at 48 with double nerve spare. Yes recovery can take ages but you do lose heart after all this time when you have put so much effort in. At least I'm retired and can always find a window of opportunity. It must be difficult when you work and get home and have dinner and maybe kids etc to find the time. All I can say is that without injections I'd be doing my nut by now. They are as close to the real thing I might get. The injection itself is nigh on painless but for me myself the awful pain for the whole day post usage is enough to ensure that only 1 ever gets used per week. Quite simply , what was a bountiful love life pre-op has simply evaporated. On every level mental and physical. But I think we are ok mostly , apart from lifetime treatment now and forever uncertainty.
I know you shouldn't have to do this , but you can actually phone iMedicare direct and get a rep round and they will size you , give you prescription codes and everything. Shame you can't right your own prescription Henry ........ And not enormously expensive if you just want to crack on.
Anyway all the best with your endeavours , may the incontinence dry up , and you be undetectable and EF return to normal.
Chris

User
Posted 20 Apr 2016 at 21:29

Brilliant news henry - your ED nurse sounds great. John was supposedly using the pump 3 times on waking, 3 times when he got home from work and 3 more at bedtime. Interest waxed and waned, depending on how up or low he was feeling.

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

User
Posted 21 Apr 2016 at 22:53

Crumby medical outpatient review today. My pathology results still aren't done, and the consultant was absent. So I couldn't even hear from the horse's mouth how the operation went.

User
Posted 21 Apr 2016 at 23:12
Hi Henry,

The waiting is awful but you'll get your results soon. Just phone them whenever you need to, they'll understand because they know waiting is worrying.

When is your next appointment?

Jim

User
Posted 22 Apr 2016 at 08:33

Thanks, Jim.
Seeing Heather on 3rd May, but she will let me know before then as she is looking to see if the result is done every day.
H

User
Posted 11 May 2016 at 21:31

Update after first injection of caverject.

Reader, I got a response on 2.5 mg!
The excellent ED nurse in the urology service took me through it and watched me inject. Putting the needle in was fine. I found I needed a good grip on the syringe to apply the pressure required to get the medicine in. I could feel the pressure of this going in - not a pain, as such. She then left me to roll my penis between my hands, like I was making a sausage out of plasticine. I thought I was being hopeful at first but, sure enough, in a couple of minutes he was definitely growing, and he continued to do so, and that feeling I haven't had for six weeks of having an erection was there.
The nurse knocked to come back in, and said it was the first time she'd seen me grin 'like that'. Well it was a pleasing result! (In fact she had been present with the first consultant I saw to be given my diagnosis, so she has seen me in crumbling tears too.)

Because it was perhaps 80% of full, she said I could try just slightly more - say 3 or 4 ml (equal to 0.3 or 0.4 mg) - next time.
Off I went on my way. To the dump, in fact. I emptied the gubbins with the trouser contents of an peripubescent boy, feeling slightly guilt, but very proud. By the time I got home about an hour after the jab it was just coming off the peak swelling.
OH was out, so couldn't resist a quick unmentionable, just out of curiosity.
So I shall get a prescription from the GP. This is good for the penile rehab as well as for my sex life and my psychological wellbeing and for our relationship.

The incontinence improves apace: one Boots shield per day, and nothing at night. Increasing the exercise gently, currently using rower and cross-trainer and upping time on treadmill by a minute each time. Running remains quite a challenge for the old pelvic floor. Bit of weights and abs. One thing I can't manage is to change in the gym. I will push myself soon and get through my concern about what anyone might think if they see the pad. If they are interested they can ask ... What is the worst that can happen? I have incontinence following treatment for cancer: "get over it", as they say. In any case the not showering and changing after exercise is also embarrassing!

Time has helped our sex life. We have each overcome fears to return to intimacy. One begins to see why some say their ED inspired improvements in ways to experience the connection that sex is for. Having accepted that a bit we found a way to a very intense orgasm for the OH ...

Onwards and upwards!

Hnery

User
Posted 11 May 2016 at 21:32

Er, Henry, that is!

User
Posted 11 May 2016 at 22:14

Brilliant, delighted for you, we are a long way from this stage. It's a delight to read your posts, congratulations. Sexual activity is important to us as a couple, I have read your posts with interest. Onward and upward . I hope we get there one day, we have talked about it in depth and hope we can resume our physical relationship one day.
Delighted for anyone who can. My oh is away having treatment so another glass of red wine, and I anticipate his home coming on Friday.
Leila

User
Posted 11 May 2016 at 22:31

2.5mg !! One quarter of a syringe !?? Blo***dy well done. 40 mg is only just doing it for me , and only for 1 1/2 hrs with intense pain after. Not entirely great or comfortable. I'm thinking of becoming a monk :-((

User
Posted 11 May 2016 at 22:39

Your post do make me smile. I appreciate your honesty, it is so refreshing thank you.
Leila

User
Posted 11 May 2016 at 22:41

Sorry this was for Chris oops, I'm enjoying a glass or two, yes two, of good red wine this evening, my down time.hence my slack responses.

User
Posted 11 May 2016 at 22:54

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 23:21
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 06:06  | Reason: Not specified

User
Posted 11 May 2016 at 23:27

Or even meanwhile

User
Posted 13 May 2016 at 18:11

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 22:45
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 17:59
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 08:05

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

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

 
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