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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!
Replies to "Seems like GRAY should be the color of OUR lapel pin, right? I hear what you’re..."
I am open to resuming ADT if ( when) my monthly surveillance shows a PSA upswing . So effectively I’m on intermittent ADT. Whether or not this head off a wildfire and/or will delay castrate resistance I don’t know. As for alternative curative treatments ie targeted radiation or chemo I believe you have to have to metastasize first. The center of excellence are doing the somatic test on my post op tissue and said I will be on their radar for trials and novel therapies.Although I know the PC genetics can change over time. The oncologist there mentioned an Amgen trial coming up which was going to involve modified T cells which would stimulate ones T cells to attack the PC cells. It’s good to hear that systemic curative projects are in the works. For now I am very motivated to be the best I can be physically while on my ADT holiday to prepare for upcoming battle conditions!
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There's a sad story behind that. The scientist who initially identified PSA in 1970, Richard Ablin, ended up turning against it and campaigned ferociously to stop PSA screening, including writing a tragically-misconceived book called "The Prostate Hoax." 😢
The actual problem was that doctors were initially over-treating mildly-elevated PSA levels "just to be safe," though that's not really the case any more with better tools like MRI, genetic testing, active surveillance, less-invasive biopsies, etc etc.
Still, instead of just recommending the doctors not over-treat, Ablin and others took an extreme position and managed to convince major health authorities, including the CDC, that they should recommend stopping routine PSA screening altogether (!!!).
That recommendation has cost many thousands of lives, as the number of prostate cancer cases that are already in advanced stages at first diagnosis has skyrocketed in the U.S. (and probably elsewhere) after many doctors stopped ordering routine screening.
There is a move now to recommend universal PSA screening again (some doctors never stopped it), but change takes time.
In the meantime, we need to advocate for ourselves. Tell everyone you know who has a prostate and is age 50+ (45+ for people with Black ancestry) to go to their doctor and DEMAND annual PSA screening. Even if some private U.S. insurance companies won't pay for it, it's a cheap and easy blood test.