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Who here has been undetectable the longest? (Survey)

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Prostate Cancer
How many years have you been undetectable since treatment?
1-2 - 18.3% - 11 votes
3-4 - 18.3% - 11 votes
5-6 - 15.0% - 9 votes
7-8 - 10.0% - 6 votes
9-10 - 11.7% - 7 votes
More than 10 (tell us how many) - 26.7% - 16 votes
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Posted 10/9/2020 2:02 PM (GMT 0)
Not sure we've ever had a thread on this topic, but it might just be a good one to have.

In the current thread "Thirteen Year Anniversary" Beachbum50 happily reports thirteen years of being undetectable. Good for him!

But it started me to wonder what the average post-treatment period of undetectability has been for current forum participants. I mean as measured in years from the end of one's treatment, whatever that was for each of us. It would be interesting to see how long, typically, each of us has been holding the beast at bay, post-treatment.

(Radiation guys: count undetectable as no ongoing PSA increases).

Eight years for me so far, for example. And if everyone else would like to vote in the above survey, it would indeed be interesting to see if a pattern emerges, maybe even a bell curve, if we get enough replies.

And as the thread title wonders, who here has been undetectable the longest?

Or post below your number of years and let's see who "wins" the undetectable contest!
Posted 10/9/2020 3:31 PM (GMT 0)
12 years!

Jim
Posted 10/9/2020 3:41 PM (GMT 0)
You say "post treatment". That's ok but what about us guys who are in active treatment with Lupron + ADT? Or whatever the treatment.
Posted 10/9/2020 4:04 PM (GMT 0)
January will be 10 years for me.......fingers crossed and positive thinking will prevail.
Posted 10/9/2020 4:15 PM (GMT 0)
GoBucks -

Good question.

For purposes of this survey, maybe we can say that if the ongoing treatment (ADT + Lupron, for example) is "keeping the person steady," then we'll count that as "undetectable" (in a sense) time.

If anyone thinks there is a better interpretation, please feel free to post it.
Posted 10/9/2020 4:15 PM (GMT 0)
I rounded a bit and chose 3-4. My last undetectable was at 2 yr 10 mo; my next will be at 3 yr 4 10. For us high-risk RP guys, the 2- and 3-year marks are statistically important. I have in my notes:

One study found 75% of the high-risk men encountering BCR did so in within the first 2 years post-op and 82% within 3 years.

Another study: For all-risk men, 2/3 of those encountering BCR do so within the first 2 years.

Djin
Posted 10/9/2020 4:18 PM (GMT 0)
While he isn’t on this forum, I have a neighbor who had surgery with pathology of 31 of 32 nodes positive. He did ADT and no RT and has been undetectable for 10 years.
Posted 10/9/2020 4:30 PM (GMT 0)
Duck2,
I sure like hearing those positive stories. Thanks. 🙂
Posted 10/9/2020 4:40 PM (GMT 0)
i'm in my 10th year of remission post treatment.

post treatment = after treatment (ADT + BT + IGRT) and the return of testosterone to normal levels.
Posted 10/9/2020 5:10 PM (GMT 0)
Not me!

<1
Posted 10/9/2020 5:11 PM (GMT 0)
81GyGuy,
Since Nov 2014, after starting and continuing on Zytiga, I am undetectable for a solid 6 years now.

I was Dx in Nov 2012,(eight years ago) with stage 4 with 4 bone mets. Keep the faith brothers.
Wings
P.S. -to F8-so you still have that dang prostate, no RP?...me too!
Posted 10/9/2020 5:31 PM (GMT 0)
14 years
Posted 10/9/2020 6:07 PM (GMT 0)

Wings of Eagles said...
81GyGuy,
I was Dx in Nov 2012 with stage 4 with 4 bone mets. In Nov 2014, after starting and continuing on Zytiga, I am undetectable for a solid 6 years now. Keep the faith brothers.
Wings
P.S. -to F8-so you still have that dang prostate, no RP?...me too!

I still have it....such as it is smile
Posted 10/9/2020 7:54 PM (GMT 0)
I guess I'm just a kid. 5 1/2 years since RALP on 2/17/15.
Posted 10/10/2020 12:00 AM (GMT 0)
I'm at 34 months. Good stats Djin.
Posted 10/10/2020 3:11 AM (GMT 0)
Not undetectable, but stable at 0.20 to 0.30 and 13 years out...

pasayten
Posted 10/10/2020 3:53 AM (GMT 0)
10 years today!!
Posted 10/10/2020 9:11 AM (GMT 0)
12 Years for me too!
Posted 10/10/2020 12:36 PM (GMT 0)
11 years last April.
Posted 10/10/2020 12:49 PM (GMT 0)

This thread, 81GyGuy, is generating great interest and responses! Great thread AND survey!

At present, I am happy to be undetectable.

When I visit Mayo Clinic, they define undetectable as anything less than 0.10 on their PSA scale.

My latest PSA tests have been below 0.05 on the ultra-sensitive PSA test used at my local clinic. I have much to be thankful for.

I LOVE it when our members here post GOOD NEWS! I give thanks and my heart leaps every time!

I KNOW what those "good news" days mean to a fellow! Any great news shared by a comrade here lifts ME up, every single time!

Meanwhile ...

Any fellow reading this who doesn't fall into the "undetectable" category -- take heart!

That doesn't mean your treatment isn't keeping the beast in hibernation.

Sometimes, PSA scores simply level off --- and stay stable for YEARS.

That's treatment success, as well! "Stable" has become a valued word here, trust me!

At other times, it takes time for PSA values to decline, after starting a treatment. There can be a "delayed benefit" !

My lesson learned? Each case is different, but ANY drop or stability in PSA can be meaningful and encouraging to a fellow.

My greatest moment of elation these past years came from watching my PSA tumble from over 100 at diagnosis, down to "double digits" after one month of treatment.

I was still very FAR from undetectable, to be sure, but that moment gave me the hope I needed. I will never forget the elation of that moment.

We all find our "fighting spirit" at some unforgettable moment in the battle --- and that was MY moment.

Here's to YOUR fighting spirit, wherever you might be in the fight TODAY!

CYCLONE ~~~ # Iowa State University
Posted 10/10/2020 1:37 PM (GMT 0)
<< I LOVE it when our members here post GOOD NEWS! I give thanks and my heart leaps every time! >>

I believe it was Compiler who used to start a thread each month titled "Tests." Members who had PSA tests, scans, or whatever that month could post their results. More often than not the news was positive and it was a good way to keep track of our comrades.
Posted 10/10/2020 2:03 PM (GMT 0)
If Halbert is still a baby, I guess I’m an infant, even though our Primary treatment was within a couple of months of each other.
I’ll call it 1 year 11 months, but that includes 6 months of ADT (and SRT) plus the time it took for T to rise. Will text st next week so we’ll see if I just jinxed myself
Posted 10/10/2020 2:15 PM (GMT 0)
13+ years. Even though stage 3b after RP I never had a climb in PSA. Technically 11 years after stopping adjuvant HT.

Great to see all of the long term success stories.
Posted 10/10/2020 7:07 PM (GMT 0)
Popped in to see what's going on here, and found this interesting question. I'm not sure how to answer!

I was on Lupron for 3 years during and after radiation therapy. Undetectable PSA throughout.

Lupron ended in spring 2016. By summer, my testosterone was recovering, and my PSA level rose too. That wasn't completely unexpected, since I still have a prostate though it had been irradiated. Some level of PSA was to be expected, though my oncologists didn't agree about that. One said he was concerned for me if the PSA came up at all, which it did. The other said he wasn't concerned unless it got up to 1 or so (which it did).

Well, the PSA did drift up over time, and hit 1 in late 2018. With a G9 case that doesn't make much PSA in the first place, that level worried me to be honest. The trend was a slow drift upward, with a lengthy doubling time. Anyway, the only realistic next step for me was to suppress testosterone again at some point. With lots of studies I found regarding the difficult course of G9 cases, I decided out of caution to just go ahead with that in spring 2019.

By July, my PSA was undetectable again, and has stayed there. I have no T to speak of, so in a sense I'm really "on treatment" again anyway, and will stay there. (I'll never again be in a "since treatment" situation.)

So overall, I don't think I've ever been undetectable "since treatment", though that is not necessarily unexpected after having primary radiation therapy. Some, like JNF I believe, are undetectable after their radiation therapy, which is terrific!
Posted 10/10/2020 7:27 PM (GMT 0)
Jerry, good to “see” you. And great to hear you are still undetectable
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