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User
Posted 16 Sep 2014 at 01:11
My story is very positive compared to many. I've had surgery, RT and am a year into HT. I'm due to get the results of my PSA test tomorrow and it should be below 0.05.

The HT has been really hard work. I've had ridiculous, comedic hot flushes, weepiness, fatigue and very unpleasant bone pain. I so want to pack it in. My specialist is OK with the idea as was the oncologist. They advised 6 to 24 months. The gains of staying on are debatable, but I'm really anxious about stopping treatment. Anxious about just waiting. I know my prognosis is good but...

This anxiety might stem from the fact that my first PSA test in 2011 was about 24 following a haematura. I wasn't told and was discharged by a consultant urologist without a retest, scan or biopsy. I was retested 2 years later as part of another issue . It had gone up to 36. Two years wasted and some heavy duty treatment I might not have needed.

I can't be alone in this feeling of wanting to move on, wanting to stop thinking about this stupid, nasty disease but actually being reassured by being made to feel rubbish by zoladex!

I keep thinking another month. As I said I know I'm lucky compared to some but I've had enough. Any comments on what I can expect to happen when I go freelance would be appreciated.

Is it hot in here or is it just me...

User
Posted 16 Sep 2014 at 01:11
My story is very positive compared to many. I've had surgery, RT and am a year into HT. I'm due to get the results of my PSA test tomorrow and it should be below 0.05.

The HT has been really hard work. I've had ridiculous, comedic hot flushes, weepiness, fatigue and very unpleasant bone pain. I so want to pack it in. My specialist is OK with the idea as was the oncologist. They advised 6 to 24 months. The gains of staying on are debatable, but I'm really anxious about stopping treatment. Anxious about just waiting. I know my prognosis is good but...

This anxiety might stem from the fact that my first PSA test in 2011 was about 24 following a haematura. I wasn't told and was discharged by a consultant urologist without a retest, scan or biopsy. I was retested 2 years later as part of another issue . It had gone up to 36. Two years wasted and some heavy duty treatment I might not have needed.

I can't be alone in this feeling of wanting to move on, wanting to stop thinking about this stupid, nasty disease but actually being reassured by being made to feel rubbish by zoladex!

I keep thinking another month. As I said I know I'm lucky compared to some but I've had enough. Any comments on what I can expect to happen when I go freelance would be appreciated.

Is it hot in here or is it just me...

User
Posted 16 Sep 2014 at 15:01

As regards symptoms after HT it was many months before I had any signs of improvement. However as you have been on it for a far shorter term you might recover quicker. One of those you don’t know until you try.

There are those who feel intermittent is as favourable as continuous HT. My view is if a ‘cure/lifetime control’ is still seen as a realistic target then there is need to have HT continuously (in your case 24mths), but?

Ray

Edited by member 16 Sep 2014 at 15:02  | Reason: Not specified

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User
Posted 16 Sep 2014 at 15:01

As regards symptoms after HT it was many months before I had any signs of improvement. However as you have been on it for a far shorter term you might recover quicker. One of those you don’t know until you try.

There are those who feel intermittent is as favourable as continuous HT. My view is if a ‘cure/lifetime control’ is still seen as a realistic target then there is need to have HT continuously (in your case 24mths), but?

Ray

Edited by member 16 Sep 2014 at 15:02  | Reason: Not specified

User
Posted 16 Sep 2014 at 18:04

Hi

I had RP followed by RT 6 months later. But they didn't put me on HT. I'm waiting for my yearly PSA result, it was 0.048 at 5 months post RT.

If your specialists are happy for you to come off it I'd be inclined to see what your latest PSA is then possibly discuss coming off it and testing in 3 months. What was your histology and post RP PSA?

Bri

Edited by member 16 Sep 2014 at 18:05  | Reason: Not specified

User
Posted 16 Sep 2014 at 19:09
Hi Erewash,

John tolerated the HT for 6 months and then stopped; he said there was no point having the treatment if it makes life miserable. Two years on, he remains undetectable although there is a tiny creep upwards (0.01, 0.02, 0.03) - it's one of those 'suck it and see' things I think.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Sep 2014 at 19:47

Just had a PSA result but unfortunately its come from a different lab. Back in February, post RT it was 0.02. This one is less than 0.1.

I think I'll ask for a proper comparison before I decide what to do. The joy of all of this is that there is no correct decision, no best route to take. My specialist takes the view that it is possible to over treat, as he made such a good job of the surgery I'm inclined to trust his judgement. We'll  see.

It is warm in here though!!!!

 
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