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Prostap recovery

User
Posted 06 Mar 2020 at 10:23

Hi all

I'm now 7 month odd from finishing Prostap injections my last one being on 13th March last year. I only had 3 x 3 monthly injections as I found the effects humiliating and degrading. I also had 37 radiotherapy sessions with their own unpleasant side effects. 

I have read that it takes the same time to recover you were on treatment. I certainly still suffer muscle wastage and a changed metabolism. I can also tell that my testosterone is not back where it was but as one of the side effects is testicular atrophy where testosterone is produced, my question is this - is it possible to recover further or am I stuck at being this 60% human being I have become

User
Posted 10 Mar 2020 at 19:02
Nobody's trying to "impose their view". This community exists for the purpose of helping one another in what's a horrible illness. We all know what you've gone through physically, because we've been there ourselves. Advice is offered in the spirit of trying to help each other get through a very difficult time in all our lives.

Best wishes,

Chris

User
Posted 10 Mar 2020 at 10:19

Although I am in a slightly different situation to yourself I understand why you are burying your head in the sand and just backing away. I’m only 52 now and have had my prostate removed. Utterly wrecked me mentally and physically for a good while. I’m now incurable with psa well over 300 and mets starting around my body. I refused radiation 6 times as they believed it wouldn’t be curative and I didn’t want compounded damage to my pelvis. They have wanted me on injections for a year now but I’ve simply refused because I’m enjoying being a whole man again with a full sex life and work and virtually no health issues at all. Yes I’m dying , and there will be many on here who think I’m an idiot, but I’ve made it blatantly clear I won’t be starting anything until I feel ill . It’s my life , my cancer , and I can deal with it the way I want to.  We are all different individuals and there is no right or wrong.

Edited by member 10 Mar 2020 at 17:10  | Reason: Not specified

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User
Posted 07 Mar 2020 at 09:58

Have you seen any of the hormone therapy symptoms reverse yet? You are just about at the earliest point they might start to, so I wouldn't worry yet. What you could (and I would argue, should) do is to ask for a testosterone test to be included with your PSA tests from now until your testosterone gets back into normal range, as it's difficult to interpret PSA values when you have no clue if patient is still under the effect of hormone therapy. When people come off hormone therapy, it continues acting for a while, but when it eventually stops, the testosterone can come back quite quickly.

Testosterone is only made in a small part of the testicles. The rest of the testicles respond to testosterone production, so the fact your testicles shrunk doesn't mean they can't produce much testosterone.

User
Posted 07 Mar 2020 at 13:16
Why do you consider yourself to be 60% of a human being, bear? HT symptoms can be unpleasant, but most men cope reasonably well. Do you have a prostate cancer support group near you? You might find it helpful to talk to other men who've had similar treatment to you.

Very best wishes,

Chris

User
Posted 07 Mar 2020 at 13:18
Thanks for that Andy.

Some of the effects are starting to wear off I think, judging by the morning glory I've started getting recently. Still find it difficult to use that through to climax which is one of the things that makes me terribly aware of lack of testosterone.

Although I never suffered fatigue, my muscle wastage means I get tired much quicker than before (I have a very physical job) so that's something else that causes me anxiety. For instance I used to run a lot but although I've recently been to a treadmill in the gym, I can't bring myself to run locally where people can see me leaning over a wall to catch my breath. When the hormones kicked in this was one of the worst things as I could actually measure how pathetic I was as I run with a smart watch.

I was getting 3 monthly blood samples and should be due another oncology appointment next week. However, I haven't been asked for bloods this time which may be because I cancel the appointments as soon as they come through. I can't face talking to people about this over and over again. I did ask for advice on certain aspects during my treatment and got the brush off from both my gp and oncology nurse. I've now found out that some advice I feel I should have got my have helped prevent my little man from shrinking quite as much.

It's good to know, however that I may have more recovery to come.

Thanks for that.

User
Posted 07 Mar 2020 at 15:12
I think Andy’s suggestion of a cancer support group near you could be helpful, as the disease is clearly affecting you psychologically.

I have ended up with an impotent micro-penis following my prostatectomy, but I just laugh and make light of it.

I hope you find some help as I am sure you are 100% human!

Best of luck.

Cheers, John.

User
Posted 07 Mar 2020 at 15:31

Whether you go for surgery or HT/RT, prostate cancer treatment is almost always life-changing. Everyone needs to find their own way of coming to terms with that fact, and some definitely find that process more challenging than others.

All the best,

Chris

User
Posted 09 Mar 2020 at 20:46
Thanks all for your comments.

A couple of observations.

When I sat outside waiting on each radiotherapy session I found I was obviously the youngest there. I had to change to wait in the main foyer however after a time, as the conversations were all around symptoms that each individual felt were common to all, as were their methods of treatment/coping with it. I found this attitude quite blinkered but understandable for people who were focussing on their own misfortunes. However, the discussions on how insomnia or gynaecomastia was going for them or what size incontinence pants were best became unbearable. With this in mind I have no desire to go and sit with others in the same situation and share blinkered points of view and obsess on symptoms, side effects and treatments. If I have any questions, I am happy to seek medical advice from those actually qualified to answer them. Which at the moment, I don't.

As for describing myself as 60% of a human this is obviously a psychological interpretation but is based on the physical failings, some of which I have described above. Some others are too disgusting for me to share thank you all the same. Whilst it may be true that some men cope better with side effects than others, in my case the side effects have had a large physical and practical impact on my life, and as some of them are quite degrading, I have enough self respect to make me be ashamed of my failures.

As I said earlier, I am getting 3 monthly bloods taken to measure psa and have made arrangements to have any concerns from the oncologists to be related to my wife. I can quite see that someone may consider me putting my life at risk, however, despite euthanasia being illegal, I believe that is still my prerogative in the UK.

It's just my way of coping. It may not be yours.

User
Posted 10 Mar 2020 at 10:19

Although I am in a slightly different situation to yourself I understand why you are burying your head in the sand and just backing away. I’m only 52 now and have had my prostate removed. Utterly wrecked me mentally and physically for a good while. I’m now incurable with psa well over 300 and mets starting around my body. I refused radiation 6 times as they believed it wouldn’t be curative and I didn’t want compounded damage to my pelvis. They have wanted me on injections for a year now but I’ve simply refused because I’m enjoying being a whole man again with a full sex life and work and virtually no health issues at all. Yes I’m dying , and there will be many on here who think I’m an idiot, but I’ve made it blatantly clear I won’t be starting anything until I feel ill . It’s my life , my cancer , and I can deal with it the way I want to.  We are all different individuals and there is no right or wrong.

Edited by member 10 Mar 2020 at 17:10  | Reason: Not specified

User
Posted 10 Mar 2020 at 16:27

Thanks Chris. 

It's nice to have someone who is happy to raise points and not impose their view. 

User
Posted 10 Mar 2020 at 19:02
Nobody's trying to "impose their view". This community exists for the purpose of helping one another in what's a horrible illness. We all know what you've gone through physically, because we've been there ourselves. Advice is offered in the spirit of trying to help each other get through a very difficult time in all our lives.

Best wishes,

Chris

 
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