Hello fellow PC travelers, Heizenburg here.
I used to be in this forum around 6 x years ago, when (in 2018) I had recently being diagnosed with PC (Gleeson score 7, 3/4) and was deliberating whether to go for surgery, or radiotherapy. I was not keen on surgery, as I had read a few horror stories on this, so opted for radiotherapy. The maximum PSA prior to RT was ~ 13.
I had 20 x RT sessions, which was a bit uncomfortable at the end, but the discomforts soon passed. The only lasting downside was of course ED, which has never really recovered.
For the best part of 4 x years, the PSA was around 1.0 -1.3, but in May 2022 it started to creep up. PSA came up over 6.0. I went for scans - no spread to bones or other organs - but to my Lymph nodes - a cluster of Illiac nodes that are near to the prostate. I was given a short course of RT that year, and PSA dropped again to 1.0 - 1.7, but by March 2024 it had crept up to 4.5, and by May it was 7.4. Again a repeat of the scans - again no spread to the bones & other organs, but (I think) three further lymph nodes were affected. They were not in a cluster this time, so it was not deemed practical to administer RT - with the oncologist likening this approach as 'whack - a -mole' but recommended ( strongly) that I go on to hormone therapy - 'for lifetime'
So, this was the third 'shock' - the first the initial diagnosis, the second the realisation that the tumor had spread, and the third that it was no longer locally treatable. I had always pretty positive along the way, but the last one hit pretty hard.
I have had 2 x injections, the first in June this year, of Goserlin 3.6mg, and for now these will be given monthly. Three weeks after the first, I had no or little side effects, but by the fourth week and and beyond the hot flushes have kicked in, the libido, such as it was, has retreated further, ED probably worse, and a sense that my crown jewels have lost volume. I may end up on the 3 x montly / 10.8mg bumper injection for convenience, and hope the medicine dissipates gradually.
From the figures above, it is evident that I have had a pretty easy ride so far, but the 'prognosis' is not particularly cheerful. Recently I summoned up courage to ask the oncologist his estimation.He started with 6 x years, then tempered this by reasoning that the tumor had (only?) traveled to the lymph nodes, and the Gleeson score / level of aggresiveness was not so high, so suggested 10 years. Ten years seems a fair amount of time, but if I consider that the last 10 years have passed in the blink of an eye, my demise is just round the corner. I also got the opened ended prognosis - that certain PC 'travelers' can go on for decades.....I should point out that I have just turned 73, so can hardly expect that..although I still work full time, play sports, DIY etc etc, and generally in good health otherwise.
So, to come to the point - are there any PC 'travelers' out there who have been on a similar path to me? I would be interested to hear what you think of lifetime hormone injections. Are there viable alternatives? Would chemotherapy be a short sharp method to clear it out? Are there positive (long term) results from immunotherapy? I would be open to suggestions.
It seems like the conventional thinking is - hormone treatment suppresses testosterone, and PC feeds on testosterone, so this keeps the tumor at bay, but for how long???
Look forward to hearing from anybody out there,
Heizenburg
