Its time I became visible on this!

Hi all,

Where to begin, firstly, probably with Martin and his recent posts under the younger men specific groups category. If you're reading this mate, Im so sorry you find yourself here with the rest of us. but in sharing your thoughts and fears you have triggered me to perhaps share my own story.

Im Jamie. Im now 47.

In September of 2020 and for the first time in my life, I experienced,what for me, was an outrageous episode of haemorrhoids and what seemed to follow was an urgency in my needing to pee. I assumed the two were linked and, given my fathers ,albeit, non cancerous issues with his prostate, were maybe just a part of getting old.

Fast forward almost 1 year (Sept21) and on and off urgency in peeing issues, I decided to call my GP and ask for some sort of tablet that would alleviate these issues. Thankfully she was as dilligent as she was intelligent and after prescribing me antibiotics to clear any potential infection, insisted to me, and, just to make sure, I come in for a routine blood test. This I did and within a few weeks I was reffered to Urology at Glasgow Royal Infirmary.

What followed throughout the month of December, were the worst 4 weeks of my life.

Upon my initial consultation (DRE), the Urologist made it clear that things were not entirely okay and that I needed further tests, however, given my age (46) and non prior familial history of prostate or breast cancer, we should remain positive until the outcome of these tests.

A cystoscopy, an ultra sound and an MRI followed with the latter indicating a trans rectal biopsy was required.

I attended said bioscopy 5 days before Xmas, still, naively, believing I had prostatitis. To some, this isnt a painful procedure, to me? I found it horrific. Im probably most scarred by the consultant, quite nonchalantly,telling me, as he was doing it, that it was almost certainly cancer.

Xmas was obviously a bit crap and on the 7th of Jan I received a call to confirm that I had a T3a prostate cancer with a Gleason score of 3+4 and a PSA of 11.4. 

I was given 2 options, radiotherapy, which included 20 sessions alongside a 3 year hormone treatment. OR robotic assisted radical prostatectomy. The first of my appointments was with the oncologist, she was delightful and clearly explained that my prostate was like an island and that my cancer was on its west coast. it was not aggresive but it's coastal position presented a problem, whilst not directly advising me, she gave me the distinct impression that surgery was perhaps my better option. 3 years of hormone therapy would almost certainly deprive me of my ability to reverse park or understand the offside rule, wouldn't it? ;)

4th March and a visit to the Glasgow Queen Elizabeth and a meeting regarding potential RARP. I thought back to 1986 and walking out of a reserve match at Celtic Park, I met the only human being I had ever wanted to meet, Paul McStay (great Celtic player). I was gobsmaked. He was my hero. My only hero. Until now. Mr whateverhisname assured me, that given him and I were almost exactly the same age, that he would do his utmost to ensure the best outcome for me. He told me that I would probably have contininence issues after surgery that would almost certainly improve with time and also have potency issues, that again, would almost certainly improve with time.

I had my surgery on the 10th of May. I was told by the nurse who was with me in my operation that my surgeon, true to his word, spent at least another 90 minutes with me to spare 3 of the 5 on my right side nerve bundle, having spared my entire left. He had told them it was a "little sticky" on that right hand bundle, but that he needed to give it his best as he had promised me. My hero, my true hero.

9 days later I had the catheter removed at Gartnavel Hospital and, unexpectedly ,my continence, was pretty much perfect, I wore pads for the following 7 days expecting something to be wrong, but thankfully I have been 100% okay on that front. Regarding ED, It is now 6 weeks since surgery and I have not had anything close to a pre operative erection, as anticipated, but as each day passes, something stirs. Also and just as important, the dry orgasm thing? Whilst a little bizarre at first, Is not the worst thing in all of this. 

So, to summarise, I am almost 7 weeks on from the op.I have my pathology report set for the 8th July ,I'm hopeful,  I start back work next week feeling confident to do so. My scars are healing, I live with a woman that I have now, absolutely, realised I love  more than I could ever possibly convey and I am also ridiculously happy at having found the genorosity that some of you have within you to give to people like me and hopefully Martin too.

The Chris's, The Dave's, The Barry's, The Ulsterman's The Ivan's but maybe more than anyone? THE LynEyre.

Thank you all for making my journey that little bit easier.

Much love.

Jamie.

Edited by member 11 May 2023 at 02:00  | Reason: Not specified

Bloody hell Jamie….what a post! Provoked a few tears down my face. Hits a nerve and reminds us all what we’ve been through and going through still. 

So happy you’ve had the best results possible and wish you all the very best for the future. Your parents must be over the moon and so proud. 

Take care and enjoy getting on with the rest of your life x

So, Just thought id give an update exactly a year since my operation. As our Dave said some time ago now, Its probably helpful to some to read about progress or even the lack of it.

Well Im 48 now,(😉) and grey hairs have recently decided to be prominent on my head. I dont think its PCa related to be honest, although you never know. 

Anyway, Im good. My last blood test, a month or so ago, had me at undetectable again. Im told my next one is in July and to be honest? Meh!.. I do my best to not allow it to occupy my thoughts for any second longer than it has to. Whats the point? 

Its been quite a year. Those first few weeks werent anything close to as bad as I thought they might be. It obviously wasnt pleasant but I think by week 3 I was pretty much feeling that it was in my rear view mirror. The first real obstacle was getting past histology. I think that appointment was always going to be the most nervy one and thankfully mine was as good as I could have hoped for. Physically, I seem to be good too. I was fortunate enough to have full continence immediately after my cathater was removed and since then have had no issues except when I need to pee, I need to be quick. Thats really the only physical difference outwith the potency issue. To be honest? I actually quite enjoy a pee these days. Back in December I went for my first night out since my op that involved a fair bit of Guinness. I found myself needing to go sharper than any other time in my life. Holy moly, I can still remember the fear. My old pelvic floor wasnt half put to the test. I thought my a*sehole was going to sink into some sort of black (white headed) hole, I was clenching it that much. Any kind of DRE at that point would have been utterly futile. It was awful. Anyway I got to the mens room in time only to discover that the the only pew available was in the middle of two gents. Never ideal. I will never, ever forget,as long as my arse looks south, the sound as my flow hit that aluminium wall. Firstly, it was my sigh of relief that I heard, before realising the guys either side of me might have thought they were in some sort of metal air raid shelter. PSSSHHHHHHHHHHHHH. I could sense their wtf moment, I wanted to reassure them that I wasnt normal. That id had my prostate removed.  But instead I just laughed to myself. It was utterly f*cking brilliant. As i walked home later that night, albeit as drunk as a skunk. I cried as I thought back to that pee. I sort of realised that for the first time since my diagnosis, I laughed at it. F*ck you prostate cancer. F*ck you very much. The b*stard had stolen my erections, my sperm and far far too much of my life. I realised that drunken night that I wasnt going to allow it to steal my laugh. It hasnt and it wont.

Anyway, erections? Nothing. Pretty much nothing for about 8 or 9 months and then, not a great deal but definite improvement. I had 80% nerve sparing and im currently, probably around the same percentage in potency. He cant stand up on his own quite yet but I will continue to give him as much encouragement as I can.

So on to year 2 I go. I think im blessed. Im definitely blessed when it comes to having found this community. There are so so many good souls here that are so undeserving of this shitty disease. 

Wishing you all the warmest.

Much love.

Jamie.

Edited by member 11 May 2023 at 03:32  | Reason: Not specified

Only just seen this original thread Jamie, such a great post and really pleased everything has gone so well with your surgery and recovery.

Like Dave says best to double check but it’s likely to be <0.1 I always have to ask that when I ring the surgery for results.

Best of luck for your upcoming appointment 👍

Best of luck tomorrow Jamie. 

Hi Jamie, 

I started taking L-Arginine at a couple of months post op when my tadalafil prescription became a battle. I could manage penetration at 8 months but I'll never know if it was down to L-Arginine, natural healing or tadalafil, or all three that eventually did the trick.

Adrian, 

I find 100mg sildenafil doesn't do much for me, 10 or 20mg tadalafil works, but injections give by far the best results. Worth considering if you haven't already. 

Kev.