My husband had RP in Sept 2016 for Prostate Cancer T2C. Gleason score revised up to 7 in some areas, 6 otherwise. Cancer in both lobes. 50% nerve sparing.
All tests every 3 months to January 2018 were >0.1 and then he was to have another test in June. He didn't manage to (typical man🙄🙄) get that test until January 2019, after I had nagged him for 6 months. It was 0.3.
Back to urologist who was surprised, as the margins were clear and the cancer was supposedly contained in the prostate. (The original MRI had shown it near the prostate wall in one spot but we had been told that was nothing to worry about when they checked it after surgery)
Repeat PSA in Feb was still 0.3.
MRI was negative so we went to Heidleberg at considerable expense for the supposedly definitive PSMA Pet Scan. Nothing showed up. They repeated it...still nothing showed up. They suggested waiting till the PSA was about 0.5 and having the scan again. (Not available in Ireland and our insurance won't cover it as it's diagnostic as opposed to being a procedure)
3 days later we had another PSA test and results this morning are 0.4.
Our urologist said initially if nothing showed up on either MRI or PSMA scan he would go ahead with radiotherapy anyway. Is this not like trying to kill a mouse hiding under a seat in a football stadium??
I don't understand PSA doubling time and maybe we don't have enough tests to predict it yet but it's quadrupled in 16 months from undetectable. The question is should we fire ahead with indiscriminate radiotherapy now and hope it's just localised, or wait and get another PSMA pet scan when the PSA reaches .5?
Are we even guaranteed they will see it then? It was 0.4 after all when they scanned him.
Is it very risky to wait for a conclusive PSMA scan? And do we run the risk of another one being inconclusive? We had no idea that might happen.
My husband is into quality of life, and would hate to have pointless radiotherapy if it's already in the bone. He also questions the long term benefits if any, of ADT. He has made such progress on the ED side and is having improving results without medication now, but would have put up with ED quicker than the moob he grew on one side during all of this (Thankfully it stopped)
More importantly we have 3 teenage children and he wants to be around for a good few years yet....he is only 56,(I'm 51) so if it's curable he sure as hell wants it cured.
I am trying to be strong, he is still the love of my life after 30 years together, and my best friend too. He himself is unbelievably strong so I have to pretend to be! I can't really talk about it to my friends. I find this site very helpful. Any advice appreciated, if delivered gently....feeling pretty fragile right now.