Hi all - back again.
see my Bio for background - but in a nutshell am 16 months post-RALP, histology upgraded Gl.7(3+4) to Gl.7(4+3) with tertiary 5. PSA undetectable <0.01 for 12m then latest two results @ 0.04.
Have just returned home from an outpatient appointment as advised by my surgeon. This was based on my own concerns regarding hip and back pain and what feels like some swelling in my groin. Same hospital as I had my prostate MRI, biopsy and received my diagnosis - but different to surgery and TWOC.
I saw a Urologist I haven't met before. He had my file… and asked me if I had had any treatment yet! There was no record of my prostatectomy OR my histology in the file!
He didn’t know my PSA history, so I had to fill him in there.
He could not believe I had not had a follow-up appointment since operation.
He suggested I may have fallen between two hospitals given my home address in Holmes Chapel (?)
Who should sort out that my records are complete? Is this my GP, or?
I showed him my copy of the histology report. He seemed concerned about the combination of my 2x positive margins and 2 most recent PSA@0.04 - and wants to send me for a full body bone scan and CT. My understanding was that further actions would only be taken if I was seeing 0.1 or higher - he suggested that the newer/younger radiologists might have a different view and so would take to MDT.
He had a prod around my groin area (tender but no hard mass felt) and gave me a DRE (not sure why at this stage!)
As you might imagine I am now particularly concerned and worried that my treatment path is going in a different direction - possibly based on an incomplete picture.
I have written direct to my surgeon and the two ‘navigators’ that I’ve used in past. Have a tel appointment with a new GP tomorrow so will raise it then as well.
Any thoughts on what else I could/should do?