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← Return to Onward with durable remission
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Hi Heavy Phil
It took awhile to find the phrase “ persistent PSA” as compared to “ BCR”. My 0.31 reading at 3 mos post surgery was pretty fast for a BCR and the theory is that something was left behind after surgery despite clear margins and no lymph node involvement. Hence 6mo ADT 4mos after surgery and 37 radiation sessions 5 mos after surgery. I know that my risk of BCR within 10 yrs is very high from the Decipher reading but I don’t know that 24mos of ADT will be a significant benefit over 6mos with monthly monitoring . The four oncologists that I met with all used the phrase “grey area” on longterm ADT. The other murkier area is the advisability of putting high pressure on relatively unstable cancer cells by taking away all their testosterone for a prolonged period and pushing them to castrate resistance sooner.
Having said all that I just don’t know if I will become a cautionary tale! I still find it a bit astounding that there isnt more definitive data for the range of risk stratifications of PC. From my reading I would guess that a lack of early risk stratification protocol by urology practitioners over decades has a lot to do with this. Sorry about getting on my hobby horse but I think aggressive PC should be called something different than low risk PC…..
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Seems like GRAY should be the color of OUR lapel pin, right? I hear what you’re saying and I just can’t help but think of all the men who had this disease decades ago and were in the hands of urologists who really had no idea how this disease should be treated, let alone classified.
And even further, how many old time GP’s didn’t even refer patients to urologists? In fact, even the PSA test is relatively ‘new’ and STILL controversial!
I read recently that Rick Steves, famed TV personality/tour guide was diagnosed with PCa after having his FIRST PSA TEST at age 68. I thought I had read the article incorrectly but no, his doctor never did one…WTF??!!
Sorry to digress, but my point (I think!) is that even today there is no real consistency of thought when it comes to most cancers. Even in breast cancer they want to declassify ductile carcinoma in situ as ‘non cancerous’ and give it a different name since it is rarely invasive….rarely….
In your situation perhaps ‘plain old’ ADT is not the answer. Many have spoken about germ and somatic genetic testing (not Decipher) giving greater insight into what their cancer would/would not respond to down the road should it return (BRCA2). I guess you already know that its propensity to become castrate resistant is higher due to your Decipher score.
So maybe instead of staying on ADT longer and wasting time, a more proactive approach using different drugs might be more appropriate? Yeah, here you want off of ADT and I’m suggesting even more treatment - NOT what you want to hear, nor would I. But as you say, you don’t want to be the star in a precautionary tale either. What can I say? It is indeed a gray area😖 and a frustrating one for patients!