Hi I was diagnosed back in Oct 22 with a PSA of 10, Gleeson 3+4 ,T3b (spread to seminal vessels only).
PSA reading Jan 25 0.02
I started with Bicalutamide in Nov 22 followed by prostrap injection later that month. It was planned that I stay on HT until Nov 25.
I had 20 fractions of RT in June 23, with little side effects, except I started with Prositus in April 24 and that continues, there is no treatment for that as it is damaged tissues in the bowel from the RT.
I am 66 and my question is how have others coped with the side effects of HT. I have read on here and in other places the side effects diminish over time of our treatment. That hasn't been the case for me. I have hot and cold flushes, terrible fatigue somedays, ED, complete loss of Libido. Loss of muscle mass, although I excersize most days but still feel weak as a kitten. Also I feel quite down some days and can hardly get myself out of bed. My urinary problems have only got worse since RT and continuation HT injections.
It has been an ongoing discussion with my oncologist and in Jan this year she agreed go take me off Prostrap and put me Bicalutamide 150 mg tablets daily as they are supposed to give fewer side effects...in my case it was quite the opposite and I was quite ill. So I went onto Prostrap again 2 weeks ago.
I am feeling better now I'm off the Bicalutamide but the side effects of Prostrap are kicking in again.
We have agreed that I can come off HT a few months early so my last 3 month injection will be in April which will take me through to July ( the consultant explained that they like high risk PC patients to be on HT for at least 2 yrs after RT). I will have been on HT for a total of 30 months.
I appreciate no one can predict if it has done its job until my testosterone starts to increase again.
I cannot imagine what I will do if my PSA starts climbing again and am told I need to go on HT again.
How have others coped with the side effects of HT over an extended period of time and any advice you can give me go get through the next 4 months.
Thank you
Hello Brizzy1
I am so sorry to read your post - I completed 3 years HT in December 2024 (you can read my journey by clicking on my name or avatar). I think I had every side effect going plus some extra ones as well.
I got through mine with the thoughts that I was on a curative pathway and with the amazing support of my wife, family and this Community. I convinced myself that 3 years wasn't the end of the world and I could live with whatever was thrown at me and it would be a challenge.
What have I come out with at the end of 3 years?
* I am much closer to my wife than I was - and we were close having been married 46 years.
* I eat and drink less - eat healthier and still have to buy bigger trousers.
* I know how to cure my hot flushes, itchy skin and when I am heading for a "bad day/week".
* When I have been fatigued or tired - the dog has had an extra walk as I have forced myself to exercise.
Mentally it's been tough - brain fog, appointments, mood swings, changes in my body, loss of erection, loss of sexual feelings, loss of body hair.
The good bits- my wife, my adult children, my grand children, my friends, my dog, this community, going on holiday and realising it's not the end of the world.
The bad bit now:
I cannot imagine what I will do if my PSA starts climbing again
Yes, my PSA is back on the way up - but the journey continues and with the support i have I will get there.
All I can suggest is look at all the positives - life is good - and you will get there.
Best wishes - Brian.
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Hi, I am sorry to read your story and I am sorry for you. I hope your story won’t be mine… I started Bicalutamide tonight and will have a Eligard shot in a week so I cannot provide much help on the best way to cope with the side effects.
My oncologist recommended me this book, maybe you could find some answers there :
I found it on Amazon and ordered it tonight
