I have found that trying to find the answer to specific questions and queries I have about Prostate Cancer (PCa), was difficult using the internet, and everyone's PCa battle is individual and doesn’t always cross match to others in a similar situation. So I thought I would document my journey so far in the hope that aspects of what I am going to reveal will resonate with others and will generate debate and maybe give an insight into what I may expect in the future.
So let's begin, I had a PSA test in Oct 2018 when I was 58 YO, this was part of a screening initiative that I was invited to attend. The results came back at 5.38, which in my mind at the time was not an issue when I knew of friends who had PSA scores into triple figures. So the doctor arranged for another PSA test in Dec 2018 and that result was 5.09. I live in the UK BTW.
The doc referred me to a Urologist and in late Jan 2019 I had an MRI scan.
In March 2019 I had a consultation with the Urologist where I was informed that the MRI scan result was PIRADS 3 Lesions Bilaterally, which to be honest didn’t mean a great deal to me but it did mean that I would have to have a prostate biopsy, my PSA reading for this consultation was 4.36
So forward to Sept 2019 and away I went for the biopsy, which was a transperineal ultrasound guided biopsy. I won't go into detail only to say that the area where the needle was inserted was painful for about 2 weeks and I had blood in my semen for about 8, which was pretty alarming at the time. Plus I was starting to get really concerned now about PCa and started searching the internet for answers and to gain an understanding of what to expect in the future.
So on the fateful day of the 3rd of October 2019, I had a consultation with the Urologist where I was informed that I had PCa. My PSA score for this consultation was 5.09, the biopsy took 27 samples and the num of biopsy samples affected was 5/5 on the left anterior, was given a Gleason score of 4+3=7 and a grade group of 3 with a T=2, N=0, M=0. If there was any good news to be had, it was that the cancer was contained inside the prostate. Was given 2 options for curative treatment, prostate removal or Radiotherapy + ADT. I went to this consultation on my own telling my wife not to bother because I didn’t think it was anything to be concerned about. My emotion when informed that I had PCa was disbelief, and I didn't really take in a lot of what else was discussed. I would advise that you take someone with you when you attend meetings, for support and a second pair of ears.
So, after researching both options in terms of success and side effects, both seemed to be evenly matched. One of my main concerns, and I would suggest the majority of men, was the possibility of sexual issues after treatment, I have been married for 40 year and with my wife for 42, we have Sex at least 3 - 4 times a week, so obviously the prospect of ED or impotence was at the top of my agenda. Now this is where I made my first mistake through ignorance and lack of knowledge. The side effects mention that with both treatments there is a 50% chance that you will suffer from ED, but at the time that didn’t really sink in. How could it when even at this stage I could still get an erection on demand like a stallion on steroids? I thought to myself that the 50% that get ED or other sexual issues are older men, or men who had ED issues before.
I eventually opted for radiotherapy + ADT and had a meeting with a Consultation Radiographer on the 25th Oct 2019, where the treatment plan was described to me starting immediately. I took my wife to this consultation, because it is going to have a profound effect on her too. I won't go into detail about the treatments, because they are already well documented elsewhere. This is more to do with how the treatment affected me emotionally and physically.
Started taking 50mg of Bicalutamide for 28 days on the 25th of Oct 2018
Zoladex 3.6mg Implant injected on the 8th Nov 2019
Followed by a Zoladex 10.8mg implant on the 5th Dec 2019
I had a SpaceOar procedure performed on the 23rd Jan 2020
Radiotherapy Planning session on the 28th Jan 2020
20 Session of Radiotherapy 60Gy which started on the 11th feb 2020 completed on the 9th March 2020
Had the second Zoladex 10.8mg implant on the 27th Feb 2020 completed end of May 2020
So what side effects did I have?
From the hormone therapy treatment, about 4 weeks in, I started getting pains in my joints, legs and feet, my feet metacarpals where really painful, so much so I had to give up jogging. Also started with insomnia, which was mild at first but progressively got to a stage where I was only sleeping for about 4 hours a night at most.
About 8 weeks in I started getting cognitive problems, typical examples;
Couldn't remember names of people I have known for years….could remember who they were but not their names, not always and not permanently, just on odd occasions.
Would get up and walk into the kitchen, and in that 10 second walk would forget why I went in there!
When doing online banking I would forget my userid and/or password, on accounts that I have had most of my life.
About 3 months in my body started to turn to mush, I have always been very active, running, Gym, etc and consider myself well built. My pecs started to droop overnight, was still going to the gym, but had no energy at all, went from bench pressing 160KG to struggling with 100KG, that was alarming and affected my confidence.
Also about this time my libedo started to diminish, although I was still able to get and maintain an erection, although I didn’t really want to do anything with it.
However, all the side effects were manageable and I still had a positive outlook, with the hope that these will be temporary and will gradually disappear when the Hormone treatment is completed.
Now for the radiotherapy (RT) side effects, during the start of Radiotherapy I developed a UTI and had to be treated with antibiotics, so difficult to determine what were the side effects of RT or the antibiotics, but apart from adding to an intense feeling of fatigue and urge incontinence for both passing of water and bowel movements, when I had the need to go to the toilet, I had seconds to make it, managed without too many problems, but had to dash at top speed when I had the urge.
Think the last time I made love to my wife was just before RT started, during RT I didn’t have the urge, but I also started to get problems getting an erection, still not an issue in my eyes because I was at the height of my treatment.
Fast forward to the end of May 2020, this is when all my treatment had been completed and the Zoladex 10.8mg implant had been used. So what are my side effects now?
The cognitive issues seem to have cleared up, pains in my joints, feet and hands are OK, so much so that I was able to start jogging again at the end of July 2020, water works are fine, bowel issues are about 90% OK, still have a bit of urge incontinence, but managing.
What is really concerning, are the sexual side effects, for some reason I had the misconception that as soon as the Zoladex implant had been used by the body, my testosterone levels would start to rise and I would get my mojo back - how wrong was I!
From around the end of April 2020 I have been unable to achieve or maintain an erection and still have zero libido, this has had a profound effect on my mental well being, I worry constantly about this issue, have a whole host of emotions, from despondency too deep sorrow, probably got a bit of depression going on.
My self esteem is shot, can't even bare to look at myself in the mirror, get embarrassed if there is a love scene on the TV, feel so sorry for my wife, she doesn’t deserve to be in a sexless marriage, she is a beautiful women and only 60 and I have loved her since the first day we met and apart from when we have had children have had a fantastic sex life.
I have had some dark thoughts, and ask myself should we get divorced so she can find another partner, which in any other situation would never even come into my head. I have always been a positive person, and never understood why anyone would commit suicide, and it is not something I would consider, but lets say I have a better understanding now.
I have questioned if I should have undertaken any treatment at all, not a question I asked at the time, but should have asked what the prognosis would be if I had no treatment. Obviously, difficult to answer, but if the answer was I might live for 5 years before I succumbed to the disease, if I knew then what I know now I would have taken it. 5 years of living is better than maybe 10 years of existing.
So where am I at currently as of Aug 2020, insomnia is terrible, all down to my ED issues and everything else that comes with it. Have recently had anxiety attacks, where it has been so bad that I have struggled for breath. I have been masturbating, a floppy penis, regularly to try and encourage blood flow into the penis, which is more or less impossible when you have no libido or desire to do so. My penis has shrunk, looks a bit dis-formed and my testicles are pre-puberty size. Been spending too much time on the internet looking for good news stories, but to be honest the majority of PCa survives seem to be in the same or worse situation than me!
Suppose it's only 4 months since the end of HT, and have been told that it could be 12 or longer for testosterone to rise to base levels, but counter arguments to that statement are that the RT side effects concerning ED will get worse going forward.
Sorry for the length of the posting, but thought it may help to target specific answers, rather than generic ones. Would be grateful for any advice or insights into how others have managed their demons.
Cheers Des 
