I am now 6.5 years into my PCA journey and life is being pretty good to me. I don't come on to the site very often now as most of the time PCA is very much in the background of my life and only comes to the forefront on key days like PSA tests. I sometimes feel a bit guilty at being such an infrequent visitor and poster especially when I consider how much help and support I received from the forum in the first years of my journey.
As a brief reminder of my history I was diagnosed in late 2007 with a PSA of 14.5, G7, T2C/3A. Had a traditional open RP in 2008 but had some positive margins. By late summer 2009 PSA had crept up to 0.4 and I was refered for salvage RT. That took care of the Autumn and disappointingly PSA continued to rise slowly so that in March 2010 it had reached 0.6, still a low number, and I started an early course of Zoladex. 3 months later PSA was undetectable and I continued with Zoladex until August 2011 when I had my last implant. At my request, although my symtoms were not severe, I requested to transfer on to an intermittent hormone treatment and have been very pleased with it so far.
My PSA has remained undetectable, <0.1, and was so today, 2.5 years on. I am of course delighted but know that If I had not pushed my consultant I would have been on Zoladex throughout this period as his view was if something is working why stop. I am not suggesting that IHT is right for everyone, nor am I thinking that PCA is behind me but I am really pleased that my body has had a rest from Zoladex and to be honest feel great. The only long term effect that I am experiencing is continuing ED issues but my trusty vacuum pump is helping in that area, I just wish I had got one sooner.
So, whilst my journey got off to a bumpy start and was not an instant success, I do feel I am on a good treatment regime which suits me and will hopefully give me a while longer off treatment.
So that's my story so far, I hope it has got a good long while to run.
So what has changed in the last 3 1/2 years. well up until yesterday not much. I'm now 66 and in a couple of months will be 10 years on from initial diagnosis. I have had the usual ups and downs that life brings and PCA had slipped right to the back of my mind. 6 years of PSA <0.1 helped. Then yesterday I had my six monthly call with my latest results which showed a rise to 0.4, still an incredibly low number but after 6 years with no rise it came as a bit of a shock. I must admit I was pretty disappointed and my anxiety levels shot up and for the first time in ages turned to the pages of this forum for a bit of inspiration and advice. Looking back over old posts was a good reminder that this was not a new diagnosis but an inevitable stage in an IHT treatment regime and that far from being pi--ed that this return is a treatment failure should be delighted that the first holiday from Zoladex has lasted 6years. Although it doesn't feel good to be back on the treatment treadmill it does feel good to see how my decisions around IHT have worked for me.
I'm not sure who I'm writing this post to or for, I think its mainly a note to self and a kick up the backside to remind me that things are going pretty well and I've been incredibly lucky.
So what next? I have so far spoken to the senior nurse specialist who has suggested another PSA test in 3 months which I'm happy about but she has also suggested that I wait until it rises to 10 before going back on treatment which I'm not so sure about. My original plan had been to go early when it reaches 1 and off again after 3 tests of <0.1. Any thoughts