so where do you go from here

Nidge
I just remembered that I was on steroids for a bit with abiraterone. When I stopped the abbi the Onco told be to continue with the steroids for a while but on reducing doses until my prescrition rad out.

Paul

After my last chemo I had the daily steroids for another 3 weeks and that was it.

You are already having HT, mine started afterwards but when that ended all I was on was zoladex and Biclutamide ( which they stopped last month as Psa has risen).

Basically you are on your own now apart from 3 monthly blood tests. A girl at my work who had cervical Cancer but then in remission said she found it mentally harder once treatment stopped as the routine of being with a doc of some sort regularly felt like they were doing something but afterwards it is lonely and there is no one to tell you you are doing ok!

I felt the same and had I guess depression at that time that kept me off work for a while.

Hope the PSA keeps falling

Kev

Hi Nidge,

I am at a different point to you on the PCa journey, but know just what you mean.

A couple of years ago when my PSA started rising again, I saw my Consultant's houseman for a regular 6 monthly check and his response was we will put you on HT, just that, no need for MRI scans etc because they had no intention of offering any treatment other than HT.

I wondered how they knew what they were doing as the only Biopsy/MRI etc was over 6 years old and I had had radiotherapy in the meantime.

So I went back to query this and was offerred salvage HDR brachytherapy, then because they intended to do something it was the full range of tests, MRI and bone scans twice etc.

But now all that treatment is over I am back on the shelf, 6 monthly PSA tests and seeing what happens, in a way it feels that I am not so important to them any more, but equally I should feel grateful, because they have done all they can for me and there is no point wasting precious NHS resources merely to see what is going on when they have no intention of doing anything any time soon.

With luck it may be some time before they get around to showing interest in me again, and who knows I might die of something else before then in which case they can add me to their batting average as a 'cure'! 

:)

Dave

Just a suggestion but if you have questions go and see one of the nurse practitioners in urology at the DRI. They have been brilliant for me and if they think there are questions to answer they will usually make sure they sort it. I find them approachable, knowledgeable and willing. Well worth a try!

Hi Nidge

Your psa seems to be bumbling along nicely in the unmeasurable zone. I dint take much notice of the small variations. Since June last year my psa has been .06, .07, .04, .03, .04, and .07 (Jan 11th). My consultations were 6 weekly but now gone up to 3 monthly. Onco seems happy. I don't lose sleep about these minute changes. Maybe I will when the rise to 1+

I'm still on the 3 monthly HT jabs and Enzalutamide tabs daily. What's next - who the hell knows, I'll take it when it comes

Take care Nidge, you'll be fine.

Paul

Told me I will not get anymore scans as my PSA is that low nothing will show up on any scan
Dont know if this is true or not but I have been lead down the garden path I feel several times
Nidge