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.
Sorry to read about your journey, I read it twice
I think that most of your suffering is due to the hormone therapy rather than Radiotherapy.
I still don't understand why they always seem to give hormone therapy along with RT when it is not always necessary especially with low stats and confined to the prostate.
I think that you will find the side effects will wear off over time but give it some considerable time.
Radiotherapy doesn't normally give major problems with ED.
I finished RT 3.5 years age , no hormone therapy, and no problems at the moment with ED.
Give it more time , I am sure that u will slowly feel better
Will60 sorry to hear your situation. If you look at my profile you will see my journey. I’m on hormone therapy for the foreseeable due to metastasis. For me the benefit has been not only am I incapable I also have no desire. My appetite had always been higher than my wife’s so in some respect has eased anxiety around why my wife wasn’t interested.
Ensure you speak to your go, I’ve tried viagra, sildenafil and tadafil with no real joy. After surgery I was prescribed a penis pump to help mechanically which had some good results. Unfortunately due to hormone those gains have gone. I’m waiting for an appointment at the hospital for other possible treatment for ED.
I also understand then darker side. Muscle loss, missing out on promotion (which I correctly or incorrectly put down to cancer). Body changes, peeing over the floor when sat down due to shrinkage. I’ve been placed on anti depressants and referred for counselling. Basically ask for help, take what is offered, speak to your gp or specialist nurse see what is on offer in your area.
I hope given time your function will return and I’m sure your loving wife would rather the extra time you now have over sex.
Hi Steve, thanks for taking time to reply, you may have been able to tell by the length and tone of my posting that I was on a bit of a mission yesterday. However, think it helped me to get stuff of my chest, and I actually feel relief that I have put my situation out there for discussion. Perhaps my expectations of a rapid recovery are a bit too ambitious.
Will see what happens in the next month or so before banging on the doctors door :-)
Hi Youngman, you situation is similar to mine, different paths of treatment, but the same thought process has we progressed through our PCa journey. It really is bazaar that you like I was in denial that it was cancer until you are told that it is.
Think the next step for me is to have a chat with the doc like you advise.
Thanks for your input.
The Hormone therapy can take the same time to leave your body as you were on it - so if you were on it for 9 months as I was it took about 9 months to one year to leave my body. Having said that things were gradually getting better form about 6 months out and by 1 year I was getting erections again and y sex life was getting back to normal. To begin with this worried me as I thought as my testosterone was getting higher I was again at risk from PCa. My consultant put my mind at rest and here I am nearly 4 years post HT and 4 weeks of Radiotherapy and as back to normal as I can be at nearly 77. I shall never play a good game of football again but then haven't got quite a while! The worst part for me was the muscle wastage from the HT. At my age you just can't make that muscle back but then at my age now I would be losing muscle anyway and any alteration in my physical activity (as was brought about by closure of my gym during C19 has an effect). Have a chat with your Doc and bring your cncerns up with your oncologist when you have your next review. There is always something that can be done to help.
All the best
Hi Des, thanks for reaching out to me, so I had my last Zoladex 3 monthly injection at the end of Feb 2020, the medication will have been used by the end of May 2020, I was on Zoladex for 7 months, so I am look at Dec 2020 and maybe up to May 2021 before it is totally out of my body?
Excellent news that you are doing fine at 77, gives me a glimmer of hope :-)
Hopefully by Christmas you will be seeing signs of things getting back to your "new normal".
Hi and I'm sorry to hear your story. Intimacy in your martiage is obviously important tp you and your wife. HT as you know has consequrnces for your libido as you know and hopefully thst aspect will wear off after a while.
I think it's possible that many men choose RT over prostatectomy because of its reputation for ED. The chancrs of ED with RT are less. I note that you experienced this immediately and this may be partly due to the HT.
ED after RT can be up to 50% and slso in some cases it doesn't really occur for up to 2 years after treatment.
My story is different. I elected fir surgery. At my first consultation I asked the urologist about ED, and I was told the risk was small with RT, it isn't. I was told the risk of ED with surgery was 100%.
Excuse my language but this is crap!
Too avoid too much unnecessary detail, I did elect for surgery and hsd a bilateral nerve sparing laparoscopic prostatectomy in March 2012.
After surgery I was followed up by urologists. My opinion.of their management of my ED post operatively was the same as my opinion of their origonal misinformation i.e. crap!. No help was offered at all.
Luckily I did my own research and discovered a few things which you might find helpful.
The first is to distinguish between physical ED and psychological ED. This may mot be important for you quite yet, but may be later, as I discovered.
Normally, we have erections when dreaming and often on first waking. If ED is just psychological this STILL happens. If it's physiological, it doesn't.
The second thing is that it is reslly important that if you have physiological ED, i.e. zero erections, that you regain them as soon as possible, by whatever means! If you don't then there is danger of penile blood vessel occlusion and atrophy of erectile tissue.
The ED could become petmanent.
If it hadn't been offered ask about referral to an ED clinic. Your GP can do this. However, be aware that the quality of these clinics vary. The one I wrnt to eventuslky was poor.
The trestment for ED following RT I believe is slightly different than for surgery. You can check this witj Prostate Cancer UK.
You should start taking either sildenafil or tadalafil immediately and regulatly. You may have heard of these as Viagra or Cialis. Your GP may predcribe 8 tablets a month! But you can get sildrnafil by other means.
I found out later about daily low dose Cialis, one you take every day. I believe only a specialist can prescribe this.
It's also good to get a vacuum.pump. If you get a proper medical one - an ED clinic can prescribe one - they're expensive, then using this twice a day is "erectile rehabilitation". This will help protect you from blood vessel.occlysion snd tissue atrophy evennif you don't use it for sex. Again, as soon as possible!
Thirdly, it's a good idea to undertake psychosecual counselling fir both you and your wife. Even if you struggle at first with ED this can be reslly helpful. You may have to look round for a good one. A local cancer charity may have one. The ED vlinic may have one, but you meed to check thry're properly trained.
To sum up. I had a bilateral nerve sparing proststectomy, chance of ED is 70%. Following what I wrote above I have no problems with erections st sll. Without any medication. In fact I've remarried since.
I did find that when it comes to the management of ED, at least where I live, the NHS is rubbish. You have to do something, don't just leave it, but you have to take action for yourself. Don't give up, keep trying for at least two years.
Thanks for the reply Uroboros, can't fault the care I received for PCa from the NHS, the follow up treatment for ED, which is a major contributing factor to your ongoing quality of life, is a little hit and miss.
I believe all men under going treatment for PCa should be automatically given the opportunity to discuss any possible issues with ED with a recognised expert after a period of time when your PCa treatment is complete. Surely this would help to some resolve a lot of anxiety that patients may have.
I will take your advice onboard and be more pro-active in trying to get the help I need.
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