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What We're NOT Supposed to Know

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Prostate Cancer
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RandyJoe
Veteran Member
Joined : Jan 2015
Posts : 540
Posted 4/25/2019 7:50 AM (GMT -8)
Randy has now been in a clinical trial for 133 weeks. Yesterday was his quarterly check up at Emory. (The President was in Atlanta yesterday....can I tell you what that did to the traffic situation?) We went, as usual, to the lab upon arrival. As always, they took two sets of blood samples. One is for use by the docs at Emory and one is sent to the trial sponsor. Since this is a double-blind study, we nor the doctors know the results of the PSA test. The only exception to that have been when Randy's PSA reached undetectable the first time, we knew because treatment was discontinued, and when his PSA subsequently rose to 2.0, treatment was restarted. The protocol only allows for one "break" in treatment, so since he restarted we have been completely in the dark.

Yesterday, we went in to see the doctor and all went well. Usually the blood work results are in hand when the doctor comes into the room. Yesterday, they weren't, so we waited around for the results. After a while, our clinical trial rep came into the room with the results in hand. The first words out of her mouth were: "This is going to be an awkward conversation". (Queue the clenched stomach) But as it turns out, the news was good news. It seems that someone in the lab made a error and processed the samples for PSA. Medical ethics, we were told, require that we be informed of any test results that our doctors have access to, so for the first time in a long, long time, we know Randy's PSA. Drum-roll, please....0.01.

This is such a relief. Previously, I found a reference on his scan report that showed his diagnosis as "Prostate Cancer with Rising PSA". The PA assured me that they had just picked up that diagnosis from a previous scan, and that the pathologist was as uninformed regarding his PSA as we were. I was afraid that Randy was becoming castrate resistant. It turns out he's not. Yesterday was a good day (traffic not withstanding). Sometimes it's a good thing to know what you're not supposed to know.
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mattam
Veteran Member
Joined : Aug 2015
Posts : 4124
Posted 4/25/2019 8:03 AM (GMT -8)
Congratulations! Great news.

Bad news for whoever screwed up in the lab
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garyi
Veteran Member
Joined : Jun 2017
Posts : 2244
Posted 4/25/2019 8:07 AM (GMT -8)
Whoever messed up with the lab report release deserves a BIG thanks.....
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RandyJoe
Veteran Member
Joined : Jan 2015
Posts : 540
Posted 4/25/2019 9:44 AM (GMT -8)
Mattam and Gary,

Yep. I hope whoever it was doesn't get into too much trouble. They sure made our day.
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bbqdude
Regular Member
Joined : Sep 2018
Posts : 208
Posted 4/25/2019 9:44 AM (GMT -8)
Great news. I bet the drive back home was way better than the one there even with the traffic!
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Progressing
Regular Member
Joined : Aug 2017
Posts : 334
Posted 4/25/2019 11:01 AM (GMT -8)
Great news. Hope you’re enjoying the moments.
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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2821
Posted 4/25/2019 12:45 PM (GMT -8)
If you're curious in the future, you can always request your own PSA test through an independent lab like Labcorp. You don't need to live with such an unknown, and you don't have to reveal your knowledge to the study.

Just a thought...
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GG1273
Regular Member
Joined : Nov 2018
Posts : 206
Posted 4/25/2019 1:35 PM (GMT -8)
Awesome news!

When I was diagnosed, I was asked if I wanted to be in a study by the surgeon who did my RALP. I thought about it but decided against.

Happy that everything is going in the right direction for you.
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mattam
Veteran Member
Joined : Aug 2015
Posts : 4124
Posted 4/25/2019 1:41 PM (GMT -8)
Redwing,
That’s a great idea and something I would likely do. I was thinking as I read the OP, what difference does it make in this study if everyone knows the PSA? There aren’t any judgement calls - it all seems objective based on the PSA numbers. Doesn’t seem like the need for being double blind.
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Saipan Paradise
Veteran Member
Joined : Sep 2017
Posts : 1371
Posted 4/25/2019 2:05 PM (GMT -8)
Hurrah, RJ!
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SueCAll
Regular Member
Joined : Jan 2015
Posts : 302
Posted 4/25/2019 2:50 PM (GMT -8)
Great news!
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Purgatory
Elite Member
Joined : Oct 2008
Posts : 25448
Posted 4/25/2019 3:47 PM (GMT -8)
good news indeed
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BillyBob@388
Veteran Member
Joined : Mar 2014
Posts : 4855
Posted 4/25/2019 6:16 PM (GMT -8)
Yay, RandyJoe!
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InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 4/25/2019 7:01 PM (GMT -8)
Good news, even if you're not suppose to know.
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RandyJoe
Veteran Member
Joined : Jan 2015
Posts : 540
Posted 4/26/2019 4:58 AM (GMT -8)
Thanks to all!

Mattam and Redwing: we've thought about getting a PSA test done outside the trial, but for the most part we're 'rule-followers'. I don't really know the reason why the PSA is blinded, but it is, and we agreed to that going in. It's hard and I'm a bit of a Life-Manager (my husband says it's more like Control Freak), but we assume that whoever designed the trial had a reason for this beyond making me crazy.
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Sr Sailor
Veteran Member
Joined : Sep 2015
Posts : 1368
Posted 4/26/2019 11:48 AM (GMT -8)

RandyJoe said...
Thanks to all!

Mattam and Redwing: we've thought about getting a PSA test done outside the trial, but for the most part we're 'rule-followers'. I don't really know the reason why the PSA is blinded, but it is, and we agreed to that going in. It's hard and I'm a bit of a Life-Manager (my husband says it's more like Control Freak), but we assume that whoever designed the trial had a reason for this beyond making me crazy.


I greatly appreciate the fact that you and your husband are keeping your promise to the trial! We all realize that it is hard to be 'in the dark' about the actual PSA tests, but the designers of the protocol may have had good reason for not giving the patients that info. We are just bystanders...
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NOTkidneystones
Regular Member
Joined : Jun 2018
Posts : 102
Posted 4/27/2019 5:17 AM (GMT -8)
I’ll venture a guess as to the reasoning- why not let you know? If the results are bad you might be less likely to follow the Trial to its conclusion, and THATs their motive, to test to conclusion...
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NOTkidneystones
Regular Member
Joined : Jun 2018
Posts : 102
Posted 4/27/2019 5:18 AM (GMT -8)
I almost forgot... congrats on the great results
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garyi
Veteran Member
Joined : Jun 2017
Posts : 2244
Posted 4/27/2019 8:48 AM (GMT -8)
I have one of those living with me, RandyJoe!

A crazy, life managing, control freak.... It comes with age, God bless her ;-) and you!
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