Penis Atrophie after prostate treatment.

User

Posted 20 Feb 2026 at 16:49

Hi all

I have just finnished my Prostate cancer treatment after 2 years. When diagnosed I was told I would not be able to have an errection during my Radio and hormone treatment ( prostap injections ) . I fully understood this but what they didn't tell me at all was about penis atrophie. Of course I also read the NHS website about the Prostate cancer treatment I was to receive and learnt maybe 1 to 2cm might be lost due to the treatment which was a price worth paying. In my case this wasn't true at all because as the prostap wained and Testosterone started increasing I to my horror found I had lost over 10cm when I had my first errection which occured whilst sleeping and had awakened due to the immense pain . After 2 years of nothing believe you me I checked it out. Not only had it shrunk an enormous amount it was totally distorted. One thing is certain I would never ever have agreed to this paticular treatment if I had been told this could happen. It was never mentioned at all ever. I wish I had never let the nurse talk me into it after I had decided that I was ok with no treatment at all after I was told there was no need to get my affairs in order as it would take years before the cancer finally took its toll. I'm sure some will think the sacrifice is worth it but I certainly don't and I think it is utterly disgusting I was not told about it. To me the extra few years I could get is certainly not worth it at all and it should have been up to myself to decide and not making a decision with possible outcomes not told to me especially 18 months into my treatment I found my long term partner dead after she suffered a ischemic attack . The guilt I feel is monumental for agreeing to go ahead with the treatment. Basically I'm just a guilt ridden waste of space now.

Edited by member 20 Feb 2026 at 17:46 | Reason: Hadn't finnished

User

Posted 20 Feb 2026 at 17:55

Hi THT,

The moderators are concerned about you and would like to make sure you have access to support. We would suggest you speak to your doctor as soon as possible especially if you are feeling desperate or having suicidal thoughts. Please phone NHS 111, contact your GP, ring 999 or go to A&E.

You can call the Samaritans on 116 123 any time day or night. And, you can also call our Specialist Nurses on 0800 074 8383, Monday-Friday 9am-5pm, Wed 10am-5pm They would be very happy to talk to you and can discuss all aspects of your treatment.

We know you will find a great deal of support from the online community.

Best Wishes

Payge - Peer Support Senior Officer (Online Community)

Edited by member 23 Feb 2026 at 09:42 | Reason: Not specified

User

Posted 25 Feb 2026 at 21:30

Yes I feel he's not doing badly so far because he's always been aware he could get PC, as his father had it in 1990s, and survived till 2021. His mother also survived cancer. His dad was a runner too, and ran up and down Snowdon more than once. We used to call him the hyperactive geriatric

Also he's very persevering. He'll walk whatever the weather. He's run marathons, used to jog till a few years ago when he got a detached retina. Now he just does walking which I'm sure is fine. He's done the Thames path twice, I can't remember what else. The Coast to Coast, the South Downs Way. I'm the complete opposite, I think that's why I admire his stamina. Yesterday he chopped two small trees down. Today we both planted two small apple trees, did some gardening, and then he took the neighbours dog for a walk. I'm exhausted never mind him. Thankfully neither of us has arthritis at 74 and 73. None of our parents had it.

Well done for getting through it.

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User

Posted 20 Feb 2026 at 17:55

Hi THT,

We know you will find a great deal of support from the online community.

Best Wishes

Payge - Peer Support Senior Officer (Online Community)

Edited by member 23 Feb 2026 at 09:42 | Reason: Not specified

User

Posted 20 Feb 2026 at 19:06

Hi THT,

You are right that men are not generally told about loss of length and girth due to RT/HT (and also that men who have a Prostatectomy can suffer a shortage in length due to 'cut and shut' in that operation). However, I have never heard of a Man losing so much as 10 centimetres, particularly in so short a time scale. There is some truth in the saying that if you don't use it you lose it. I agree you need to consult a specialist to see what might be possible to improve your Penis, perhaps with vacuum pump devices and drugs, also that you receive specialist counselling.

It is certainly something like other potential downsides men should be warned about before agreeing to have treatment

Edited by member 20 Feb 2026 at 19:09 | Reason: Not specified

Barry

User

Posted 20 Feb 2026 at 20:37

Yes it is disgusting that you are not told the true side effects of the treatment and even their own NHS website makes it sound like only a tiny percentage might suffer from 1-2cm of atrophie when the reality is it can be so much worse. In my case I had decided I didn't want any treatment but they spent about an hour convincing me it was for the best and not a mention by anyone about the life changing side effects after the treatment . The post is just a warning to all diagnosed, Ask for a true account of all the possible side effects of your proposed treatment and I know there were many that affected me during treatment. Skin rashes , lots of mouth ulcers etc, having to pee several times a night meaning no sleep. They perscribe Tamsulosin to relax your bladder then Alfuzosin to try and aleviate what they think could be causing the other side effects. I'm pretty sure they know it is the Prostap but more time on it passes. For the several nightly bathroom visits all you need is a sleeping pill or something equivilent , as it is not like you have a full bladder. It took me over a year to work that one out and so get a decent 7 hour sleep.

Make your own decision on what you want because your just part of NHS statistics that needs to show results and life has a cruel way of tripping you up.

User

Posted 23 Feb 2026 at 11:27

Just reread your reply. The " Use it or loose it " is rather ridiculous concidering you can't when on Prostap. A loss of 10 cm when errect after 2 years of Prostrap is actually a conservative estimate considering what it was pre treatment. You might think this a normal male exageration but my partner would regulary get the tape mearsure out as it seemed to give her great pleasure and who was I to spoil her fun. I am leaning towards the damage being caused by the radio beam treatment alongside the Prostap due to the new 90 degree angle downwards that has manifested itself as Peronies . So basically the treatment has caused horrific mutilation and large atrophy. I had a very long phone call with the consultant and was basically fobbed off as she tried to steer the conversation away from talking about it and Quoting , " You were advised you wouldn't be able to achieve an errection during treatment". Not there could be some serious mutilation and extensive atrophy.

User

Posted 23 Feb 2026 at 12:48

Hi THT,

Sorry you've had such side effects from your treatment. you're right the full extent of the effects are often not discussed, I found this to be the case. However I was referred to an ED clinic which took about 6 months. I had similar treatment to you, RT/HT and Brachytherapy

They prescribed Tadalafil, like Viagra but stays in your system longer, I have purchased extra online as they were a bit stingy with the dose. I was also prescribed a vacuum pump. Both are to try and encourage blood flow whilst you're not getting any night erections, or able to perform due to loss of libido. More a case of look after it or loose it, rather than use it!

There's a chap on here who also suffered Peyronie's during treatment, he did use a pump and found after finishing treatment and continuing use of the pump this started to rectify it's self, so you might be able to reverse some of the effects.

I'd suggest asking if you can be referred to the ED clinic, and possibly in the meantime purchase a vacuum device from somewhere like love honey or the NHS prescribed one - SOMAerect Response II - is £200ish. You could also try Viagra/Tadalafil, though on this I'd take medical advice, especially if you have any other health issues.

All the best

John

User

Posted 23 Feb 2026 at 19:05

I had 3yrs Zoladex including 2 yrs abiraterone, enzalutimide, prednisolone on trial with 32 RT sessions. You're obviously right that everything isnt explained at the outset re potential long lasting even permanent effects. I naturally was well aware that libido would be non existent for a while, no erections etc etc and I accepted that. I wasnt advised to use it or lose it, i'm sure that advice is around but I agree blokes need to be told rather than just carry on. I am fortunate that I can still function well, my treatment finished 2018, can't really complain, thats without any pumps, cialis etc etc.

Peter

User

Posted 23 Feb 2026 at 20:09

Hi Peter

Did you take all 3 of the drugs together? Abiraterone, enzalutimide, prednisolone? That sounds a bit hefty.

Husband is quite a bit older currently on Decapeptyl. He has kept everything working so far, with a pump, he only uses before a shower praps 3 times a week, and the Sildenafil his GP prescribed. He hadn't needed that before HT. Also, he's been doing the Squeezy app for men. And of course there's me. It's just a natural, integral part of who we both are, and how we live. We've had extremely difficult issues to deal with in the past, (a close family member with serious mental illness, my parents dying 4 days apart just to name two), and its been a sort of haven to retreat to. We've been together a very very long time. But the flames still burn bright, and have never gone out! on the other hand he knows there is zero pressure on him to 'perform' but just do whatever he feels like. I'm easy to please. Hopefully not tmi . For my part, I feel I can support his mental health by being encouraging, but not demanding if possible, and just keep a positive attitude.

He's very active, outside a lot. Walking every day.

After our children were born he also had a vasectomy so perhaps that changed the perspective on intimacy slightly. I also was very lucky in that I had no menopause issues, not even hot flushes.

Not everyone is the same, that's for sure! Just be as happy and healthy as we can. It sounds like you're doing really well

User

Posted 24 Feb 2026 at 18:26

Antoinette My primary treatment was 3yrs Zoladex with 32 sessions of RT. I was on part of Stampede trial which had me on the abiraterone,enzalutimide & prednisolone for 2 of the 3 years in addition to the Zoladex&RT. If it makes any difference I was 59 when treatment started.

Peter

User

Posted 24 Feb 2026 at 18:49

So it was all 3 together?

My husband is 74 but quite fit and active.

We saw the oncologist a few weeks ago. He is probably having RT in June. At the next appointment he being booked in for the preliminary scan. I was quite happy with the chap we saw, and we are seeing him again.

He is stabilising his BP which is mostly green but a few orange. That's why the Apalutamide has been delayed. I am concerned about the BP effect of this, which is why I've asked about Darolutamide but no one has answered so far. I have read it is gentler on the system.

Overall it's as good as it can be in the circumstances. We just take a day at a time and are going away for 2 nights next week.

User

Posted 25 Feb 2026 at 18:47

Yes Antoinette Zoladex,enzalutimide&abiraterone together, for 2 yrs, Zoladex on its own for remainder of the 3 yrs. The prednisolone was to combat some of the effects of abiraterone I believe, the prednisolone dose was doubled after a short enforced break due to BP increased that was sorted by medication which carries on now, 3 different tabs. I think ADT does cause BP issues plus cholesterol etc but they are checked etc obviously as they are common. In my own mind I'm grateful for having been 'overcooked' with ADT.

Peter

User

Posted 25 Feb 2026 at 19:29

Hi Peter

Husband is sort of borderline with BP. He's had some reasonable results this week but had a mix up with our pharmacist, who missed an appointment then rang the next day when we were on a bus leaving Oxford! He's really irritating so husband is just going to ignore him and see his GP. But he had that before. I put it down to 40 years in the classroom, and a son with a 'serious enduring mental illness' that took about 15 years to get help for. Quite frankly it's a wonder we're still sane! . His favourite phrase is 's*** happens, you deal with it'

User

Posted 25 Feb 2026 at 20:47

hi antoinette yes if we can easily accept that 'sh#t happens' and carry on its great, many canbut many have problems from whatever don't they. I'm fortunate that I am pretty easy going but accept that others aren't and have genuine issues. I started on the BP route when I started this PCa game but, like many things, you can't say it started because of it or spotted due to all the testing etc although fair to say the treatment made it worse, if thats the right word. Again, I'm fortunate that I'm fairly fit etc and fairly active.

Peter

User

Posted 25 Feb 2026 at 21:30

Well done for getting through it.

User

Posted 26 Feb 2026 at 09:27

Thank you for the concern. I would like to know has anyone been given access to what the full details of the actual Radio beam treatment that was administered. It is all computer controlled so their must be a record that can be checked by independent experts.

User

Posted 26 Feb 2026 at 12:16

THT, I can't fully answer your question,but I will tell you my experience. I suffered severe bladder damage from salvage RT, once diagnosed with severe radiation cystitis, I was told oh yes it does happen in 5 percent of cases. To make matters worse not all the cancer was in the treated area.

I had some private SABR treatment to another tumour a few years ago. On session 3 out of five they couldn't get lined up on the tumor and abandoned that days session, the next day they said the physicist was here too rewrite the program, that cost my insurance company another few thousand pounds.

I googled" how is a radiotherapy program written" the presumably ai response came up with a very detailed explanation of the process.

There does seem to be more attention paid to penis and sexual rehabilitation after surgery than after HT. I kept my penis healthy and exercised after surgery and RT, now on HT it gets very little exercise.

Thanks Chris

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