I have been a lurker since diagnosed in March 2020. Thank you to all the posts and advice on this forum I have prepared myself for this journey.
The purpose of this post is to share my data and my positive news today. I realise that the nonmogram shows my probability of recurrence as high but one battle at a time.
Summary below with more detail in profile.
Age at diagnosis - 54 - with no symptoms at all. Married with 12 year old son.
High PSA picked up in Medical screening (PSA 18) and then a NHS test (PSA 20). Despite being diagnosed in COVID times the NHS has been great with PSA test, MRI (PIRADS 5) and bone scan (clear) all completed in April/May 2020.
Biopsy showed Gleason 8 (4+4), 12/22 cores positive (all on right side), Cribriform pattern and PNI. Staged as T2/T3a clinically localised high risk cancer (13.5 mm cancer core).
May 2020 another PSA test - 23 so quite an increase in a few months.
Too much reading on the Internet about Cribriform pattern and PSA doubling times puts me in a bad place.
May 2020 - started Hormone Therapy.
June 2020 - Radical Prostatectomy at Royal Berks, Reading. Just a fantastic team there - my first NHS hospital visit and grateful for the service and staff. Surgeon was amazing and I had Retzius-sparing robotic surgery, one set of nerve bundles spared.
August 2020 - surgeon review. Clear margins and pStaging of pT3a n0 mo. First PSA (4 weeks after op which I thought was early) was 0.025. Hope will drop a little lower before the next PSA test (3 months).
I appreciate early days and recurrence probability is high but I wanted to share some positive news. Spending too much time reading on the Internet about Gleason 8/Cribriform pattern mentally affected me. The numbers didn't look good from the biopsy but clear margins and a low-ish PSA after surgery are a good start.
Also given the go-ahead to cancel my next Prostap injection in 3 weeks. The hormone treatment affected me - frequent hot flushes, insomnia and some muscle wastage. I guess that until my PSA rises again I have a hormone treatment holiday. I have quarterly blood checks with Thriva and the Hormone treatment was doing its job as my T-levels dropped from 15.7 (May 2020) down to 0.4 (July 2020).
ED - early days but the Hormone treatment meant I have zero libido. I will be starting with a cheap pump soon to " use it or lose it". Hoping that ED will improve over the next year.
Longer than I wanted but a story from a young-ish Gleason 8 new member of the forum.