Its seems harder to get over this than through it

Hi Gavin,

I’m a little further down the PC journey.

I too had an awful time on HT ( prostap injections every 3 months and Bicalutamide tablets 150 mg every day for 4 months) . Us men get all our energy and strength from testosterone, when it’s not there anymore there’s a chemical imbalance that non of us have experienced. However Brian is right it affects everyone differently.

I did come off HT early , I just wanted you to know my PSA in a year an an half has gone from 0.34 to 5.15 , I’ve had to have 2 Pet scans , I’m got just over a week to wait for results. So stay on HT if you can it will control your PSA and hopefully you will not need any further treatment if your original treatment has worked.

I’m also 61 and have no kids , so I completely understand your thoughts about having children, personally I would have wanted 2 boys .

Theres no easy answer, all I would say if it continues there is great help out there don’t be to proud to ask for some, it’s really helped me .

all the best

Tony

Hi Gavin,

Brilliant news with your results! Please do not be embarrassed or shy to ask for professional help. It is available and I am sure Millibob will joint the conversation soon and tell you where the best to go for help. Please stay on the HT as it keeps your cancer down and two years is not bad. My husband has to stay on it for life. His way to tackle the fatigue is to do more physical activities and for him it is working. I know we are all different.

Please ask for help and stay on this form. The people here are supportive and knowledgeable.

Best wishes

Dafna

Thank you for your response, it is very helpful . I seem to one of those that HT affects strongly. I started with a PSA of 27.4 and on my last test after treatment had finished was 0.02. This is fantastic but I do not want to celebrate. I am taking actions to combat this but it's a real slog at the moment and any success seems a long way of.....

Thank you for your response. It's very helpful..it's very tough having been a very fit football referee and now weight has gone on and fitness has dropped away. I am trying hard to pick myself up and it goes ok for a day or so then drops off again. I really hate the way this has changed me. I do recognise that talking is by far the best medicine...

Hi Gavin.

A warm welcome from a wife here. From my perspective it is difficult seeing the effects that the hormone therapy has had on my husband who is on it for life. He was in the special forces plus used to referee football and was a keen horseman. In his case a stroke put pay to a lot of the activities which we just had to accept. Going from a macho male to having to cope with his feminine side is a challenge, particularly when he has PTSD thrown in. Getting him to accept help was a hurdle but what a difference it made. I see that Brian (Millibob) has come up with a couple of suggestions which might help if you want them. He is one of us who has been there, done that and worn the T-shirt. Last year he was invited by Macmillan to become a Community Champion for prostate cancer and luckily for all of us he accepted. Thanks to their additional training he has access to a whole range of help so use him if you need to. We are here for each other both physically and mentally, understand what we are all going through and hopefully get you through to the other side.

You say that you are due to have HT for 3 years. This would indicate that you have a more aggressive form of cancer so stopping early would probably have longer term consequences. It is a balancing act but I hope you are able to stay the term for your wifes sake.

It is our group, keep chatting and there will always be someone here for you. That is the one thing I have learnt, that we are not alone.

Hi Gavin

For me, aside from the initial diagnosis, the HT was the worst part of my journey. I too was on HT for 2 years with no symptoms before my journey started in 2019. 

The HT made me very fatigued with no stamina. However, after I had been off the Prostap for 18 months my fitness levels were worse than when I was on HT.  Turns out I was anemic. A course of iron tablets seems to have sorted it.

Now, I have no idea if my anemia was amplifying the HT fatigue or whether it came afterwards, but if you are in a similar position, it might be worth getting your bloods checked,specifically iron levels.

Hope this helps.

Regards

Stuart

Hi Gavin

i won’t say I understand how u feeling as I opted for surgery rather than radiotherapy and hormone treatment. But I guess the thing we all have in common is we’ve got or had cancer. For me it’s been after treatment I’ve struggled and not everyone gets it do they. Yes we can be happy when cancer free or it’s under control but people don’t always get the psychological impact treatment has.

wishing you the very best and I hope things start to feel better for you.

best wishes

colin 

h Hi Colin Sound a very familiar story. The time from start of getting onto the system and then finishing treatment is still such a blur as it is rapid and continuous and i found it was only after it finished i had time to sit back and then hit the wall. I remember thinking what hell has just happened. Its only then things really went down hill. I have been lucky and had a few sessions with a specialist counsellor however it was time limited and just as we were getting somewhere sessions ended. The counsellors  take on it was grief and something similar to PTSD. It is harder now but at least i recognise something is not right. Gavin.

Thanks Tony it seems many are saying very similar stories. I had a PSA of 27.4 and now at  0.02 so big wow there. My oncologist is very against me stopping now as he believes this is the best chance of stopping any return. I have to reluctantly agree with him. You are right there are no easy answers and in reality non of us ever dreamed we would be in this position, so there is no preparation. This is so much tougher than i could have imagined. Gavin 

Hi Thank you for your response, this has been a revelation making this post.. I never dreamed this would be like this.

My PSA went from 27.4 to 0.02 so big wow there i was stage 2 knocking on door of stage 3 with a little 15mm tumour that i was told was not aggressive but was getting angry. It was the surgeon who talked me out of the surgery and said i was fit and healthy enough to take 39 lots of radiotherapy, i agreed and in truth physically it was not bad but grossly under estimated the psychological side of things. The side effects to the Androgen seem to have hit me a bit hard and i recognise many of them, the worst being well aware of no testosterone in my system, until its not there you do not realise how important it is. Its also so unfair on my wife as it is so hard to explain everything when i do not fully understand it myself. I am not ready just to sit back and give up but it sometimes does look like the easy option. I have been with a specialist counsellor but sessions were very limited and finished just as we were getting to the real issues.