Another post from me as a newly diagnosed worry guts.
The full outline of my diagnostic journey is in my profile note, but to save time there is a quick summary below.
I went through everything I could find and came up with the idea that this was "high risk locally advanced prostate cancer".
My sources for this are:
So, I was thinking that I can work out where I am going with this now, and went to the post-biopsy discussion with the sepcialist cancer nurse armed with this information.
She refused to characterise my diagnosis this way. She said that they only really recognised two things - contained or metastatic.
She said some comforting things ("hormone therapy with stop it in its traks" and "You're not going anywhere"), but then she gave me items printed from Prostate Cancer UK about hormone therapy and Radiothewrapy. and the Macmillan book on Understanding Advanced Prostate Cancer.
Ever since then I have been stewing on this, trying to work out what I have evaluated incorrectly. I have been chasing my tail.
I found Prostate Cancer Research treatment tool (https://www.theinfopool.co.uk/treatment-choices) and worked through it. It didn't use the phrase locally advanced but it does tell you to count local Lymph nodes as "not spreading ("If it has only spread to your pelvic lymph nodes please answer No below).
I also used this website (provided by the same hospital) https://www.canceralliance.co.uk/prostate, input my detals as requested (Staging as above, 7.4 PSA because it only works to one decimal place, and GG5 as the grade groupt because Gleason 9, and got a result which, whilst it doesn't actually SAY "locally advanced" it has this quote - "The National Institute for Health and Care Excellence currently recommends that men diagnosed with CPG5 cancer are offered treatment with the intention of cure."
I am now racking by brains to work out what I have missed, or what she might no that I don't. All the figures, results, staging etc. are what was reported in writing to my GP. I have sent a note to the Macmillan Nurses via "Ask an Expert" but it suddenly occurred to me that there are people on here that have already been through all this and might be able to offer some guidance.
Have my research capabilities failed me, or am I on the right track?
