Prostate cancer diagnosis

Hello Stanley 

A warm welcome to the Macmillan Online community although I am so sorry to find you joining us. You are not alone having to suffer 3 years Hormone Therapy - and 20 fractions of Radiotherapy - I've been there, done that and got the T-Shirt.

Yes there are side effects and I think I have had all of them and some not listed (you can read my journey by clicking on my name or avatar). I found the answer was to push on, the treatment was for my own good, and I am on a "curative pathway", a positive attitude got me through the 3 years along with the support from some of the people on this group. Yes I had my 2 bad weeks and yes I know it's not possible to be positive all the time - but it worked for me.

After almost 4 years my PSA went back up, in 3 years I added 3.5 stone to my weight. I am back on Hormone Therapy and as my Consultant says no more weight gain - she's put me on Ozempic - the weight loss jab - and it's slowly working!!

As others have said to me "no pain - no gain" but yes HT/RT is hard work and I feel your pain. You have done the first 9 months - it will get easier and I am sure with that positive attitude and continued working out and exercise (mine was walking the dog!) you will get there.

Is the lack of sleep being caused by having to wake up at night to go to the toilet? - there are ways round that too.

I hope the above helps.

Best wishes - Brian.

Hi Brian thanks for your reply its quite therapeutic reading about somebody in a similar situation and I'm sorry your psa levels are rising again. Since may I've put 8 kgs on and it doesn't seem to shift however much excersise I seem to do I just seem to be permanently knackered ,my sleep pattern is yes sometime its going to toilet that wakes me up but I only seem to sleep in 2 hour blocks and my mind is constantly thinking about negative things .Im sure I'm going to be fine and as I say speaking about it helps so thankyou .

Best wishes Stanley 

Hi Stanley (Stanley ), sorry you are feeling down but as Brian has said this is a normal reaction.  I think you are doing well with activity and am pretty sure without it you would be feeling worse.  I have been over 8 years on HT and it does get me down, but the alternative option would have been worse!

I have learnt to listen to my body and do exercise when I feel well, but leave off when not feeling great.  I have bad days when I feel rubbish and other days when energy returns and I can do more.  We are of to get some sun for a week on Monday and I am sure that will make me feel better.

Maybe chat to your GP or team about lack of sleep.  Another route is to drink plenty during the day and try not to go for a wee until really necessary but no fluids after say 6pm.  

Not sleeping and courses of steroids are enough to give you an appetite which as you say is very hard to balance and lose weight.

We (the forum) welcomes you as Millibob  has already said and his advice is top notch. But to me there are a few things you can do to help us help you, which is tell us about yourself since getting the diagnosis. Warts and all of you like as this is an anonymous forum. The place to put all this information about you age, diagnosis, symptoms, weight, pains, problems, success’ and all that you want to say. If you don’t, that’s ok too but the more you tell us on your profile page the better we can understand you and help you.

The profile page that every forum member has is the green button on the top left of this and every page, you can look and read ours too by pressing their profile button. It’s there you can write a timeline for our and your benifit and it’s there you might trigger better responses to your issues.

I’ve been through the wars and have noted it all in my profile page, but some guys and ladies here have been through lots more than me. There are so many successes too so look out for them, it’s not all doom and gloom here.

So when you’re ready write a little about yourself and maybe you’ll realise what it is you need to ask us. There’s no question too silly to ask, so ask away.

There is something I forgot to say earlier. And that’s that you must try and talk to someone, many people, friends, colleagues or specialists (I do) so you can get out some of the frustrations you will have, just like us all. We all need to talk.

Good luck Stanley