The chilled guy is still around

Hi all,

I've thought long and hard about posting this for a while now as I feel that perhaps I shouldn't, but....

I've not been active here for quite a while now, the reasons are basically two fold it wasn't doing my mental health any good keep being reminded of the sword of Damocles hanging over my head - I needed to be getting on with living rather than contemplating my PCa navel. Also as time went on friends on here started succumbing to the disease while I bumbled quietly onwards.

I've popped back in on occasion, felt bad and left again.

However, here is an update of my current status. As some of you will possibly remember, I was diagnosed just over seven years ago with a PSA around 500 Gleason 8 (5+3), T3a, N0 M0 (I had to look it up I'm pleased to say, I couldn't remember) I had radiotherapy plus Aberaterone as a trail drug all served with a side order of Zoladex.

Bottom line, numbers dropped to 0.01 within the year and stayed there.

Had to have an adult discussion with my Oncologist regarding having a hormone holiday as he was concerned with the high original PSA numbers but we agreed a trail period.

Fast forward to today, numbers still at 0.01, still off HT and been discharged from Oncology care. 
I receive my PSA tests via my GP with a plan to return me to Oncology care if the numbers move.
It's not all great, libido is zero but the boss is a trouper, my bladder and bowel function is 'erratic' from RT damage but we live a 'new normal' life.
I'm watching the grandchildren grow up, something I didn't think would ever happen.
So, swings and roundabouts.

So, fantastic news for me but I feel survivors guilt or something similar when I know others have not been so fortunate.

From those that remember me from the summer meet ups as a bit of a chunky monkey I've joined the local gym and lost over four stone in old money. Plus I was a poster boy for the gyms last nationwide advertising push, mainly on social media but hey - I'll take it! Here is the web page if you are interested.

So, take this as a tale of hope and good news or as an enormous bragging post (not my intention) and hopefully take away something positive.

All the best and keep well my friends

Kevin

That's really good to hear.
I think you are probably the second highest non-metastatic PSA I've come across. (Highest was in the 600's if I recall correctly.)

Regarding the no libido, do you know if your testosterone has recovered? I can't see when you came off HT. The extremely low PSA (for someone who still has a prostate) might also suggest you don't have any testosterone - you would probably expect your PSA to have gone up to around 1 if it had recovered. It can take up to 18 months to reappear, but occasionally doesn't at all. You could ask for a testosterone test if you're interested to know, but unless you were willing to go on to testosterone replacement therapy (TRT) which does come with a risk of waking any sleeping micro-mets, it might just be for interest.

Edited by member 14 May 2020 at 10:49  | Reason: Not specified

The business of TRT for former cancer patients came up at last year's Chorleywood Men's Health day.

We had the top urologists there (President of the institute, and another one the head of the English branch, and two more senior uros), and they were all of the view that TRT was fine if you are in remission and believed cured. The comments were something along the lines "we go to a lot of effort nowadays to plan for the best quality of life after treatment, and then to elect to stay without testosterone afterwards is a bit strange". Of course, like the treatment choices after diagnosis, it's a personal choice, and you get to decide what's important for you regarding QoL.

I did read one patient on a US forum who elected to stay on HT because it had completely reversed his baldness, and that was seemingly the most important thing to him. (He could perhaps have switched to Finasteride or Dutasteride and got some testosterone back, but I think he stayed on whatever GnRH HT drug he'd been on throughout).

Edited by member 14 May 2020 at 12:57  | Reason: Not specified

Thank you 🌹

thanks for your kind words, they are very appreciated!

Steve - a little drinkie and a catch up would be great.

cheers Kevin