Reaching Out For Support

Hello Rick,

I am 60 and had a robot prostatectomy in November last year having been diagnosed in October.  Thankfully for me, all the tests since have been positive, but the mental issues can be overwhelming - you are not alone.

Like you, I had some terrible post op complications with haematomas and infections and had to be readmitted under a blue light for 5 days.   Looking back on last Christmas, I now realise how ill I was, but one year on, I have no catheter (hooray), good(ish) bladder control and feel physically OK.  Every month I got a little better and after 12 months, I am physically in a much better place - all that despite needing more surgery in April to remove a grumbling gall bladder - piece of cake after the prostate op!

Everyone will, be telling you to be patient and that you have had major surgery - they are right!  It really does take at least 6 weeks to feel anything like normal - at least it did for me.   Just do all the sensible stuff - eat well, take exercise, don't stress out and do the pelvic floor exercises !

The regular PSA checks are a mental hurdle to contend with as the answer is only ever going to be a yes or no, but even if you do have a setback, there are loads of ways you can still get better and have a good long life.  Fingers crossed for you that they nabbed it all during surgery - I was Gleason 2a grade 7 and the prognosis is good for me now.

I am still suffering with ED, despite many treatments.  Viagra made me really ill and Caverject injections (ouch) are the latest thing, to no avail.  My wife is very understanding, (my mates less so, but I think they mean well) and it does really get to me, although I keep it well hidden.  Most people do find a way forward eventually, so again, I am afraid it the old patience routine and try everything they offer you.  I hope you have some joy soon and you really do need to "practice" - imagine getting that kind of advice from a doctor when we were 15!

Be ready fo the dark days/nights - they happen to most of us, but with the support of family, friends and the people on here, you will get through this.  You are to being weak if this does happen to you - we need to drop the macho stuff and recognise how touch a cancer diagnosis really is.

I still feel very anxious about what I have gone through and what may still lie ahead - it feels like a type of PTSD to me, although I have never really talked to a professional about this.  I like to keep my deeper feelings to myself, which is probably not helpful, but everyone finds their own way and it is reassuring to read on here how others have experienced the same thing.

So - keep your chin up Rick - 2020 will be a good year for you.  There is no sugar coating on this forum, but it helps us all to share I think.  Best of luck to you my friend and if you feel I can help, then happy to reply.

Mark

It's just over 6 weeks now since my operation and I got my first PSA results yesterday of 0.01, whilst I was hoping for zero this has to be the next best outcome, i.e. the lowest detectable figure. I've read somewhere that anything under 0.03 is considered as an excellent result and the individual can be considered as now in remission. Next week I meet my surgeon for my first follow up consultation since the operation itself. Not too bad incontinence wise, wearing a lightweight pad during the day and night. 

Reference ED, I'm taking PDE5 - half a tablet prescribed every 3 days to stimulate blood flow, but has no effect on getting an erection. I know this is going to be much slower in progress and I think for me - no longer having an active sex life in the traditional sense is going to be difficult to come to terms with. I'm now on my local NHS waiting list to see a sex therapist at the end of February to discuss the options open to me. 

Whilst things are getting slowly better, I still have frequent periods of low mood and I'm not as confident as I was before my prostate cancer diagnosis. I return to work shortly and to be honest that is something I'm not looking forward to. 

Anyway, that's my latest honest update on my progress so far and how I mentally feel. 

Rick,
Reading back through your posts, I think you might really benefit from going to a local prostate cancer support group, if you have one nearby. You can talk easily to other men with the same issues. There's a search facility for local support groups here: Find local support
or if you say roughly where you live, someone may comment on nearby groups.

You are clearly concerned about ED, as indeed most men are at this stage. ED is completely expected so soon after the operation anyway, but I couldn't see if you had nerve sparing surgery or not. Since you're on a PDE5 inhibitor (I'm guessing is Tadalafil), that would suggest you did have nerve sparing surgery, as it's not given in the case of non-nerve sparing surgery.

Edited by moderator 24 Dec 2024 at 15:09  | Reason: Not specified

Rick,

I think you’ll learn to cope with the ups and downs because they are the new normal. I’m certainly still like that, and I’m still a newbie at 8 months post-op. I still get days when I’m down and don’t really understand why. You have many things to be positive for and so try to think of those last thing at night and first thing in the morning (I do this, giving thanks for the cancer having been cut out and apparently gone). Well done for getting stuff for ED. My NHS trust doesn’t want to know and my otherwise excellent GP wouldn’t do anything until the consultant had ruled on it, don’t know if that affects local budgets?

When you’re down give the Prostate Cancer UK nurses a ring, they are excellent, I can’t speak highly enough of the help they’ve given me.

I think I’m 99.9% there with incontinence, just the occasional leak when twisting, turning or stretching. 0% there with ED, but it always was number 3 on my list after life and incontinence!

Going back to work might be good, it will certainly give you something else to think about. But I fully understand the “but you look well “ response, it winds me up too and don’t get me started on the NHS and prostate cancer tests.

Good luck and keep celebrating progress.

Remission in my mind is when you no longer receive treatment and can just be monitored.