Onward with durable remission

My oncologist offered to let me have the more sensitive test, but said that it takes two or three days because they have to send them out. It wouldn’t cost me any more. I get almost all my other blood test results within 2 hours, But the PSA test always takes till late in the afternoon or the next morning.

In my case undetectable is a temporary thing, eventually Nubeqa will fail and I will have to move to a PARP inhibitor. Getting A more sensitive test is just not much of a benefit to me, I need to be concerned when it is .1 or higher and how quickly it is moving.

For those that may be in remission, the test is more useful. It definitely gives confidence knowing the number is so small.

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!

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.

It's a new year and I'm in a funk, I'm 77 had chemotherapy 18 months ago then ADT for a year my PSA is undetectable .01 and have been taken off my luperon now for 4 months won't see the doc for another 2 months. I've talked to several RO'S with the same advise PSA undetectable let it be, never had any side effects from any treatment except fatigue and that's the rub on me. I've always been active living in Utah did a lot of back country with my dog's. Sorry for the run on I'm just happy to still be here.

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!

Oh man, tell me about it! I actually skipped a yearly PSA test - even after having green light laser for BPH - because of his “lament” of how his test was never intended to be used as this mass screening tool.
Seriously gave me pause to even continue testing, but a friend had just been diagnosed with PCa based on this “flawed” test so I went ahead, had the test, the biopsy…..and here I am today; might NOT be here were it not for this flawed test!
Phil

A few days ago, I got a private message from someone not in this forum, thanking me for likely saving his life by nagging people to get PSA screening (his doctor hadn't been doing it; an elevated PSA result led to the discovery of aggressive PCa that doesn't seem to have spread beyond the prostate yet, and is likely still curable).

I don't really deserve any credit, but I was still tearing up when I read that.

Get loud about this, guys: saving even one person from dealing with advanced PCa — even if, as I hope, it's sometimes more surviveable now — is worth making ourselves annoying (no one hated Bob Barker for reminding people to spay or neuter their pets at the end of every Price is Right episode). Both of my brothers are getting regular screening now, and I hope lots of others are hearing the message as well.