I am aware that ‘the mantra’ about residual tissue or indolent cells abounds. Sadly this is just not as simple as that as firstly high risk - especially after failed HIFU for supposedly G7 (3+4) with only 5-10% after two biopsies and 3 MRIs over 18 months and then in only 6 months upgraded on Another biopsy to G9 (4+20%5) and recurrence in fields and G7 on a previously free side.
in addition I am probably unusual compared to many as firstly u started checking my PSA aged 60 when it was <1 and had I not pushed in 2019 when by PSA went to 4.1 but on retest the next week was 3.5 I would nit have been referred especially as pandemic kicked in 3 months later.
I had NO symptoms, no urinary issues, never got up to pee - nor do I now and had minimal or no BPH and my prostate was unusually small / normal for my age 28cc - so after HIFU and RT there would be very little if any prostate cells left.
I had to fight at Dx that my PSA was NOT just OK for my age and probably BPH and then after HIFU, my PSA was still 5 they said it was probably infection or inflammation - complete rubbish - I know my body ! And such it was as I told them.
So I could ‘hope’ and cross my fingers for this being a benign PCa cells or slow less aggressive disease but as I’ve learnt protocols based on 20-25 year old research arr about cost management but shoukd NOT be a clinical guide or triage system but used based on and with individual patients’ and their unique history and pathology.
So IF it’s about money or overloaded system - be honest don’t pretend that this isn’t probably an sign of early BCR given its history and low levels of PSA even at Dx and the heterogeneous nature of PCa especially when you look at my individual pathology and biopsies.
So as usual with managing ALL my health over the years being on top of this to intervene with tests and then discuss the possibility of an oral LHRH agonist and, or an E2 patch as initially intermittent therapy. Obviously and critically when scans and PSMA are useful / but definitely far too late at 2ng/m. Also this is probably the best up to date (even if non NHS NICE) standard in other best centres around the world.
This is especially relevant for me given my other polio and breathing and wheelchair issues, as unlike appearance I am pretty healthy and resilient and most of my family live well into their 90s and I’m still actively working as a psychologist and I hope contributing to society. To be subject to aggressive late salvage or long term LHRH agonist and other even more aggressive treatment is unacceptable and inappropriate.
luckily my GP is excellent so we will be closely monitoring PSA and T every 2-3 months not the ridiculous 6 months suggested by the hospital letter to my GP which showed me.
Sorry, bit of a rant but I think this is a philosophical and ethical issue generally in the NHS system such as NICE, a flawed pernicious set up of the Blair years, which has addrd to turning clinical care into a kind of protocol not patient/clinician humane partnership by removing clinician’s (and other health care professionals) autonomy to work with patients as individuals in an holistic atmosphere of joint co-operative decision making abd care - and that’s not just care sadly - statistics, protocols, criteria, bench marks and guidelines have been turned into rules and restrictions and research has been hijacked by such bodies as NICE and accountants to justify these decisions / basically if if money say so - if it’s too many patients say your priorities are about age or whatever don’t hide behind these artificial barriers.