I have T3bN1M1a (PA lymph nodes)
initial PSA of 5.22 and Gleason of 3+4=7
diagnosed Jan 2020 after 2 years of ‘watching’
started Prostrap Jan 2020
36 grays Radiotherapy June/July 2020
Current PSA 0.03
no chemotherapy as immunity damaged
I have extensive ‘tumour’ in hips and behind heart and stomach
At a recent meeting with the oncologist I was told that actually I am T4 and that the T3b is referring to the Prostrate only, being metastatic it is T4 - OK I get that
however when asking about survival time lines (everyone is different) and the likely mortality times I was unprepared for that reply - that for advanced metastatic cancer ‘from diagnosis Prostrap is around 2 to 3 years (max) and further hormones another 1-2 years (max) making a rough timeframe of 4 - 5 years of which 18 months has gone.
also comments like ‘will not do periodic scan unless PSA increases’ did not fill me with confidence as for the two years watch and wait it was around the 5 mark and nothing happened no biopsy nothing.
1) I am looking for a second option as to future treatment options (NHS) as on small pension - any first class oncologists that you can recommend (so I can compile a short list)
2) anyone in similar circumstances? I would like to hear your treatment and are you being told the same timeline outcomes ?
I appreciate your time for reading this as to be true the recent conversation (of which they were not that happy about) really took the wind out of me.