My journey so far

Hello Tom,

Did you mean to start a blog or did you mean to join the main Prostate Cancer thread?

If you wanted to re-post what you’ve written in the main Prostate Cancer thread you’d probably get a load of replies and, if that’s what you would like to do, just click here and it’ll take you straight to it.

Once you’re there you then just need to click on the bit near the top of the page that says Start a discussion.

To answer your question, though, I have been on a similar journey to the one you’re just starting. My cancer had moved out of my prostate into my seminal vesicles but the spread wasn’t discovered until I was having the surgery done. Up to that point I’d been told the cancer was confined. If the spread had been known about in advance I was told back then, 4 years ago, that I would not have been offered surgery, so either things must have changed if they do offer that now, at that stage, or different hospitals must have their own way of doing things.

We’re all different so not all men who have their prostates and seminal vesicles removed will have problems with incontinence and erections. Until very recently I had no post-surgery waterworks issues, but now I’m getting some minor ones. As for erections, that’s been a different story for me but with both the waterworks and erections there are so many variables that can affect the outcome. Your age and general health will make a difference. Whether or not you religiously do pelvic floor exercisesbefore and after surgery will, too. I did do them and am sure they helped to prevent incontinence for me. If your erections are good before surgery they stand more chance of coming back afterwards. That is likely not to be instant, your body will have had a major intrusion and needs to recover and you will need to work at them and that’s not necessarily as pleasant as you’d think. I never thought that a bit of DIY could ever be a laborious task but, post surgery, it is. If you go ahead with surgery make sure your surgeon will do nerve sparing surgery or, as I understand it, you won’t get an erection again no matter how much you try.

I can’t give you a direct comparison as after surgery my PSA kept going up and so, over the last four years, I’ve had lots of other treatments, too (see my profile). Possibly my erections would have come back sooner and been a lot better than they currently are if my only treatment had been surgery and the same goes for my waterworks, which are not as good as they were immediately after surgery.

I can understand the state of bemused shock that you are in, I remember it well. Things do get better as far as that goes but you’re right to think about erections and incontinence no matter which treatment you ultimately go for, especially at the age of 53. I was 58 when I had surgery and I’m almost 63 now. Prostate Cancer and the treatments for it can all impact on the most intimate aspects of being a man so being aware of that and asking lots of questions about what all this can mean is essential.

If you’re not happy with the treatment choice(s) you’re being offered you might want to look at this page on the Prostate Cancer UK site where all the treatments that are available in the UK are shown. If you see any that you think you’d rather have then you could ask your doctor why you’re not being offered that. It might be that it’s not suitable for you or it might be that it is suitable but your hospital doesn’t offer it, in which case you could change hospitals, if you wanted to.

I hope you’ll have a look at the prostate cancer thread and get some other replies from other men so that you can get a far better idea than my one experience can give you.

All the best

Jim

My father had PSA of 28 with cancer in lymph glands at 69. No surgery just hormone and radiation. He's still alive at 92. He needs lupon every few months.