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15 months on the roller coster

User
Posted 22 Jun 2025 at 16:30

I have been on the forum for a few days and thought I would say hello to everyone and share some of the journey.  I so hope this will encourage anyone who is just starting their journey.  It is a roller coster!

In March 2024, I found myself in a hospital room with a doctor who I expected would tell me that my biopsy had found nothing.  Instead the doctor explained it was cancer and said a lot of other things while my mind stopped processing.  Thankfully my wonderful wife was with me and later she was able to tell me what I missed.

A few weeks later, I was offered the choice of hormone or surgery.  I had done my homework and was leaning toward surgery.  However, before I could make my choice, I made sure the doctor was aware of my other condition, Ulcerative Colitis.  Please make sure you do point out any conditions you may have!  This changed everything and I was told the only course of treatment was surgery.

In June 2024, I had my surgery and began the long path to recovery.  It took me nearly a week after the op to find out it had been non-nerve sparing.  On top of this I had to keep a blood drain in for a week and I had a catheter for 24 days.  The catheter was a real pain and I literally counted the days down to its removal.  Sadly, when it was removed I instantly got a water infection and had several days of non-stop pad changing.

Over the next few weeks the water infection went and I began to recover.  Unfortunately, I started to get a lot of hip pain.  This turned into an investigation for possible spread.  To cut a long story short, it wasn't but I did need some physio as the muscles around my pelvis had not set back in the correct place after the operation.

From day one after the operation, I had a lot of fatigue.  By December, this fatigue was worrying me a lot and I went to my GP and had a series of blood tests.  This turned up a worry with my liver and again it was possible spread.  An ultrasound test identified it wasn't spread but was fatty liver.

In March 2025, I had blood in my urine and was back on the oncology two week list.  I had a CT scan of my plumbing and a camera in my willie and into my bladder.  There was a strange lump in my bladder.  So I had another camera and a biopsy taken from my bladder.  Sadly, this set me back to being incontinent, but this time, I expected the worst and got the best when the results were shared with me.

It is now June 2025 and I am back to routine PSA checks.  I am off to Florida for a week to see my newly born grandson and finally feeling like I can look forward again.

User
Posted 23 Jun 2025 at 07:56

Hi Paul.

Thanks for posting your story. It will help others.

I read in one of your other posts that you were having erectile dysfunction difficulties. I replied to that post, suggesting that you try penile injections. Did you read it?

I had non nerve sparing RARP over two years ago. I was told that I would never get a natural erection again. Unfortunately up to now this has been the case. However, six months after the op I was prescribed Invicorp and it works!

Please see the attached:

https://community.prostatecanceruk.org/posts/t29845-Hooray-for-Invicorp

Good luck, mate.👍

User
Posted 25 Jun 2025 at 17:10
Hi Adrian,

Thanks for the suggestion. I did go to the ED clinic and have the tester penile injection. My wife was with me. We both felt it looked difficult. Then we were given a prescription that was meant to be 4 injections per prescription but the way it was written led to the pharmacist refusing to give me more than one. I then got lost in a loop trying to get the prescription changed. All the while the fear of the side effects and of doing the injections wrong grew to the point where we decided to do without.

Thanks again

 
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