I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

New diagnosis and worried about side effects of surgery

Email this conversation Print this conversation

User

Posted 13 Jan 2023 at 12:55

Hello All,

Well here goes. Im 46 years old and have recently been diagnosed with prostate cancer. My Gleason score was 4 + 3 and I was advised at the appointment for my biopsy results that I should have a radical prospecting. I’m due to have another scan PSMA PET scan to see if it has spread but according to the MRI scan before the biopsy it hadn’t spread to the lymph nodes or bones in the pelvic area. After the PET scan I am due to see the surgeon, at the end of this month, to discuss treatment options. I have done a fair bit of reading so far and am scared about ED and urinary incontinence after surgery. I have read that if they can spare nerves on the sides of the prostate that there is more chance of receiving erections later on and that incontinence gets a lot better over time. Does anyone have any advice or support they can give on the side effects of surgery? I’m worried that I won’t be able to get into a relationship in the future and that my erections won’t return. Thanks in advance and would be interested to hear peoples experiences.

User

Posted 13 Jan 2023 at 14:39

Unfortunately, one cannot know in advance just how severely or for how long side effects will impact a man in your circumstances after Prostatectomy. The vast majority of men gain urinary control within months or in a lesser number of cases within a year or so. It is thought that regularly doing your pelvic exercises helps speed the process. Very few men are permanently incontinent so odds are in your favour. As regards ED, that will be influenced by what nerves are preserved and your penile rehabilitation.. So as soon as you are deemed right to do so, you need to exercise your penis and pumps can help. You an also get your GP to give you tablets to help encourage erections.. Get specific advice on this depending on how it works for you. It can take quite a time before you can have penetration without chemical or mechanical help and not always even then. Hope you are one of the more lucky ones.

Barry

User

Posted 13 Jan 2023 at 15:46

Hi RP September 2022, Age 52.

Full nerve sparing - I have ED. My penis will have a flush of blood occasionally but only predictably when I am about to orgasm but that's it. Not given up hope but not banking on ever being able have a meaningful erection ever again. Hence nerve sparing not a guarantee of anything I'm afraid. With regards to tablets, it's a postcode lottery. My authority will not prescribe anything anymore...

Incontinence I was fully continent 4 weeks after catherta removal, but only suffered the odd drip and squirt prior to that. Again though no guarantees, there are so many on here who sadly never regain their continence.

User

Posted 13 Jan 2023 at 16:03

I think all of us at your stage wanted to know just how much they would suffer side effects, and no one can say what will happen to you specifically. The only information is in the form of averages, but actually it isn't that reassuring to know that most patients recover erectile function when you might be one of the ones that don't.

Obviously you can ask your surgeon at your appointment, but s/he won't be able to offer certainty. However it is helpful if the nerve bundles are able to be preserved - basically the nearer to the sides of the prostate the cancerous regions are, the more difficult it is to remove the cancer without damaging the nerves. Even if the surgeon can't preserve the nerves it seems that some men (about 1 in 6) regain some erectile function, and the likelihood increases considerably if one or both nerve bundles are preserved. The other thing is that your chances of regaining function are much better if you have good erectile function before the operation.

Unless there is some reason why a different treatment is impossible in your particular case. you could consider some form of radiotherapy. All the main treatments have much the same success at eliminating the cancer. Radiotherapy (either external-beam or brachytherapy) tend to have better data for recovery of erectile function once the hormone treatment that usually goes with it wears off - but brings a risk of some longer term side effects.

You should definitely spend some time reading all the toolkit booklets which are available to download from this site, or you can order paper copies.

As Barry says, there are things you can do to have the best chance of recovering function, and plenty of people here who can tell you more about those from their personal experience.

User

Posted 13 Jan 2023 at 19:49

Hi Domdela,

Sorry to read your news.

Other responses have given good advice, especially about how variable the effects of treatment can be. The only thing I would add is that, if you have time before you need to make a decision about which treatment you want, and you own a Kindle, there is a book called "Saving Your Sex Life: A Guide for Men with Prostate Cancer" by Dr. John Mulhall. (I think it is also available in print, but at an exorbitant price).

He goes into the pros and cons of all the main treatments for Prostate Cancer, comparing survival rates, effects on E.D. and urinary incontinence. I found some of it a bit technical but I thought it was worth ploughing through. It is a little dated now, as it was written more than 10 years ago, and it's from an American perspective, so bear that in mind. As the title of the book suggests, he also gives advice as to what you can do if you're struggling with E.D. and compares the effectiveness of treatments for that.

Best of luck in whatever you decide to do.

JedSee.

User

Posted 13 Jan 2023 at 21:45

Hi Domdela,

Obviously sorry that you find yourself here mate, but at this point youre probably not seeking sympathy. I was diagnosed with very similar readings to you almost exactly a year ago. I too was was just 46. I was 3+4 with T3A.

Lets be confident that there isnt any metastasis. You're MRI hopefully indicates this.

So. Surgery.

I was terrified at the very thought. However, If Im honest? I was even more terrified of multiple treatments, I.e, Radiotherapy with Hormone therapy. I just wanted it gone. Naturally.

4 months after diagnosis I had my surgery with 80% nerve sparing.

Honestly? It wasnt anywhere near as bad as id began to imagine it might be. Facing a cancer diagnosis is worse in the head than it is within a hospital. It really is.

As soon as my catheter was removed, I was 100% continent. Super fortunate. Was that a younger age thing? I dont know.

Im 35 weeks later, I hadnt had anything close to a pre operative erection until just before Xmas. It was a Thursday. I hope to never forget it. But my best friend suddenly, like properly suddenly was way better than he was the day before. I think im moving forward. I hope I am.

My PSA is undetectable and im moving on because i have to. I have somehow found the strength and deep down im pretty sure you will too.

You can deal with this. Straighten your shoulders and breathe in.

Wishing you the warmest,

Jamie

Edited by member 13 Jan 2023 at 21:53 | Reason: Not specified

User

Posted 14 Jan 2023 at 00:44

Sorry you find yourself here Domdela.

As everyone has said no one can predict how things will be for you after the operation and we can only provide our own experience (or that of our husbands).

My husband is much older than you and had RARP in Dec 2021. He really didn’t find the experience too bad. He was fairly continent from catheter removal, wore pads for a few months though as could have slight dribbles throughout the day. The times it was a bit worse (and can still get it occasionally now) is when he has had a bit too much alcohol and any sexual activity….certainly nothing major though.

He had 50% nerve sparing. He hasn’t had any medication to help with erections but did use a pump for a while, but hasn’t done for quite some time now. He was managing to get erections with the pump and using a durex ring but very recently he has had a fairly good erection using no aids at all. We never really expected that so even 12 months on we are pleased with progress.

Jedsee mentioned the Dr John Mulhall book, we haven’t read this but I did watch a YouTube video of him presenting at a seminar which we found really interesting. I’m sure if you Google his name the video will come up.

Hopefully after you spoken to all the experts your decision making process will be easier. Wishing you the very best of luck.

Elaine

User

Posted 14 Jan 2023 at 16:16

Hey All,

Just wanted to say thank all you all for your responses which I have found really helpful and also touching. I’m not usually a fan of the internet but this forum has allowed connections and support I would otherwise not have had. I’ve downloaded the book recommendation and thank you so much for putting me on to it. I hope everyone’s recovery/journey is going well and thanks again - it means a lot.

User

Posted 01 Feb 2023 at 00:07

I had surgery 12 years ago. I am 99.9% continent but suffer from ED, more due to my age rather than the surgery. My erections were waining before the surgery. We decided not to go for any drug or other invasive solutions but opted for VEDs. We still have a very active sex life. You may find my posts under ‘Re-establishing Sex Life’ under ‘Conversations’ on this website interesting, particularly those who may not regain your erectile function and may have continence problem as I do when sexually elicited.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.