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Back here after 10 years with not good news.

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Prostate Cancer
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Izzyblizzy
Regular Member
Joined : Oct 2006
Posts : 411
Posted 10/7/2016 7:38 AM (GMT -8)
My SO (Ken) just had his annual physical last week and ten years after a radical prostate surgery his PSA has gone from undetectable for last 9 years to 3.6. Has an appointment this afternoon with TUCC (The Urological Center of Colorado) this afternoon (they did his original surgery, etc.). I probably haven't been around here for 8 years or so, but this site was so helpful first time around. I am sure I will have lots of questions as this process goes on, but for now will browse around and see what I can find about recurrent prostate cancer after 9 years. Anyone else going through this let me know! Would welcome any support.

This is our (Ken and Tanya) info from 2006/2007:
Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Treatment: DaVinci. Completed April 3, 2007

Edit to add path results (thanks Island Time): Path results: 1% of prostate involved. Very small tumors on both right and left apex. Negative margins, negative seminal vessicles, lymph nodes left intact. Gleason upgraded 3+4=7.

All PSA's since surgery (until last week): <.01

Post Edited (Izzyblizzy) : 10/8/2016 9:20:44 AM (GMT-6)

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island time
Veteran Member
Joined : Dec 2014
Posts : 2348
Posted 10/7/2016 8:21 AM (GMT -8)
Path results: 1% of prostate involved. Very small tumors on both right and left apex. Negative margins, negative seminal vessicles, lymph nodes left intact. Gleason upgraded 3+4=7.
Three PSA's since surgery: <.01

Sorry you're back. I went ahead and posted the final path report from a post you made before leaving.

Was the 3.6 PSA test last week his only test or has it been confirmed by another test? (If it's not been confirmed, that's probably the first thing TUCC will do).
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Izzyblizzy
Regular Member
Joined : Oct 2006
Posts : 411
Posted 10/7/2016 8:35 AM (GMT -8)
Thanks for that update Island Time on post-surgery results. I was trying to find my old posts and was having a difficult time. I did remember being totally relieved at the good pathology results after his surgery way back then.

That was his only blood test by his primary physician since about a year ago. Last one was again undetectable, so we were very much feeling out of the woods. I too, am hoping against hope that something went terribly wrong with his blood result, mixed up results or something! (Still crossing my fingers that is the case). But, yes I am sure TUCC will order another one. Hopefully with a quick turn around so can start moving fast on this.
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Tall Allen
Elite Member
Joined : Jul 2012
Posts : 10645
Posted 10/7/2016 8:39 AM (GMT -8)
darn! That's a kick in the gut. Lab errors do happen all the time.
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InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 10/7/2016 8:53 AM (GMT -8)
wow, that's horrible.

I vote for a retest. An out of band result like that needs to be confirmed.

If it is confirmed, wow, that would be a stunner.

Andrew
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Bobby Mac
Veteran Member
Joined : Mar 2016
Posts : 804
Posted 10/7/2016 9:38 AM (GMT -8)
As stated above a retest is in order.

If PSA holds up I would get a 68 Gallium PSMA scan, or Choline Scan, to see where the cancer is before making a decision to treat it. I had the PSMA scan and found it was still in the Lymph Nodes and Prostate Bed.

Since my cancer was still in the local and regional areas I've decided to have SRT. If I found it had metastasized outside the regional area radiation, in my mind, would have been fruitless. And it may turn out to be fruitless anyway?

Best wishes and hope it was lab error.

Bobby Mac
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BillyBob@388
Veteran Member
Joined : Mar 2014
Posts : 4855
Posted 10/7/2016 9:40 AM (GMT -8)

InTheShop said...
wow, that's horrible.

I vote for a retest. An out of band result like that needs to be confirmed.

If it is confirmed, wow, that would be a stunner.

Andrew

It sure would be a stunner! And not only distressing for you guys, but for us. Look forward to hearing results on a follow up test!
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Izzyblizzy
Regular Member
Joined : Oct 2006
Posts : 411
Posted 10/7/2016 10:08 AM (GMT -8)
So my guy just got out of Doctor's appt. The dr. agrees that need to do another blood test because the PSA seems way out of normal and very atypical of recurrent cancer when you don't have a prostate. We should get the results on Monday. He also did a prostate exam to feel if he could feel anything in the region. He said couldn't feel any growth, but perhaps a bit of a tightness, so ordered a biopsy in region and an MRI. Can always cancel if it turns out the PSA test was way off.

Says will go from there based on PSA result.

That is just the update from Ken. He recorded the whole conversation (with permission ... I couldn't make it to appt.) So will tell you anything new once I hear the whole convo.
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InquisitiveOne
Regular Member
Joined : Dec 2015
Posts : 119
Posted 10/7/2016 10:34 AM (GMT -8)
Wow that is a shocker to read. I too am hoping for lab error. Hoping for the best.
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Michael_T
Veteran Member
Joined : Sep 2012
Posts : 4043
Posted 10/7/2016 10:47 AM (GMT -8)
I also vote retest. Good luck to you and hope everything is a false alarm.
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PDL17
Veteran Member
Joined : Oct 2011
Posts : 686
Posted 10/7/2016 6:33 PM (GMT -8)
I can't imagine the test being valid based on your history. Let's pray it is not.

Paul
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celebrate life
Veteran Member
Joined : Dec 2014
Posts : 2111
Posted 10/7/2016 9:55 PM (GMT -8)
Well Izzy,
Welcome back. I hope your return is short lived with error verified soon.
We are traveling from NorCal to CO next week to visit my DH's mom in the Sangres. What part of the beautiful state do you reside? I was born and raised in Canon City.
Beth
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Izzyblizzy
Regular Member
Joined : Oct 2006
Posts : 411
Posted 10/8/2016 7:32 AM (GMT -8)
Hi Beth,

We live in the foothills west of Denver along I-70. Genesee if familiar with area, near Evergreen.
Have fun on your vacation! We were just vacationing down near that area for fall leaf peeping, hopefully you might catch the leaf last gasp.

Thanks to you and everyone for the prayers and wishes for an error! Appreciate it. Will let you all know on Monday when we know.
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Howard3569
Veteran Member
Joined : Nov 2014
Posts : 625
Posted 10/8/2016 7:53 AM (GMT -8)
After ten years, I guess its possible, because anything is possible dealing with cancer. Good luck.
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Ravineman430
Regular Member
Joined : May 2014
Posts : 183
Posted 10/8/2016 9:42 AM (GMT -8)
That is very startling new, I too feel a retest is needed. I hope this is a lab error or some other error that only a retest can confirm.

Good luck and hope this turns out to be nothing to worry about.
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gedman
Veteran Member
Joined : Jan 2013
Posts : 1138
Posted 10/8/2016 4:26 PM (GMT -8)
I rarely post on HW these days, but this thread caught my eye.

Two thoughts:
1) Yeah, redo the PSA test.
2) If you came to this site today with biopsy of 3+3 in 1 of 10 cores and 5% cancer in that core, I suspect a lot of folks here would be suggesting Active Surveillance rather than surgery. If the latest PSA test is accurate (and let's hope not), then perhaps your choice of surgery was a good one. Perhaps.

Gedman
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CaliJR
Veteran Member
Joined : May 2015
Posts : 786
Posted 10/8/2016 4:45 PM (GMT -8)
I hope this was just a test error and you get to take another 8 year break from healingwell. -JR
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Reltnie
Veteran Member
Joined : Feb 2013
Posts : 722
Posted 10/8/2016 4:49 PM (GMT -8)
I don't mind telling you that this post caught my attention. I hope that a retest will prove this to be a horrible mistake for your sake (and selfishly mine). I have my 5 year coming up in February and had that as my own point where I could be relatively confident that pca was behind me. Best of luck and sure hope the lab screwed up.

Tom
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Tony Crispino
Veteran Member
Joined : Dec 2006
Posts : 8160
Posted 10/8/2016 5:02 PM (GMT -8)
You know this is one of those websites where you meet people and become friends and hope to help each other out so you never have to see or hear from each other again. Kind of a contract to eHarmony.com. :-0

I hope all comes out well Tanya. Welcome back! I hope it's a mistake.
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lifeguyd
Veteran Member
Joined : Jul 2006
Posts : 691
Posted 10/8/2016 6:34 PM (GMT -8)
Sorry to hear you might have a recurrence. I had my da Vinci surgery in 2007 too. I had a recurrence last year and treated with radiation. The only advice I question is Bobbymacs advice to sign up for expensive scans and tests that will likely show you nothing.

As others suggest, check the PSA again. Your numbers indicate that scans and MRI's will probably not give you new information.
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Worried Guy
Veteran Member
Joined : Jul 2009
Posts : 3790
Posted 10/9/2016 2:59 AM (GMT -8)
I don't kniw about you guys but this post is giving me PSA anxiety!
Please, Please, PLEASE let us know what happens. Tell me it was a lab mistake.
Jeff in NY
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Almost a 10
Veteran Member
Joined : Mar 2014
Posts : 1070
Posted 10/9/2016 7:22 AM (GMT -8)
Like others have said, have the PSA retested in a couple of weeks. If it's still up then its time to get a referral to a medical oncologist.
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Bobby Mac
Veteran Member
Joined : Mar 2016
Posts : 804
Posted 10/9/2016 9:44 AM (GMT -8)

lifeguyd said...
The only advice I question is Bobbymacs advice to sign up for expensive scans and tests that will likely show you nothing.

My PSMA Scan was covered by insurance and I believe the Choline, at the Mayo, is also covered by insurance.

How can you make an educated choice of secondary treatment without knowing where the Bandit is?

The MRI and/or biopsy will only tell you if cancer is local/regional.

If you are basing treatment on those results you are guessing it is contained in those locations. If you do have SRT, but the cancer had Metastasized to outer regions, you have wasted time and money.

My layman opinion.

Bobby Mac
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English Alf
Veteran Member
Joined : Oct 2009
Posts : 2237
Posted 10/10/2016 7:50 AM (GMT -8)
This sounds very odd. I too hope it's a lab error of some sort, as like Jeff it's given me more than a touch of PSA anxiety.
Alf
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Izzyblizzy
Regular Member
Joined : Oct 2006
Posts : 411
Posted 10/10/2016 12:56 PM (GMT -8)
It is a lab error. Retest from TUCC is UNDECTABLE!!!! WHOO HOO!!!!!!!!!!!!!!!!

Stress has been terrible waiting for the re-test and results but thank goodness that is what it is. Dr. at TUCC is positive their lab result is correct, but still set a three month PSA check. Primary doctor has scheduled Ken to redo his whole blood panel, because if his PSA was that off, want to make sure the whole blood test isn't off anywhere else (or belongs to another patient).

It is a bit frightening that you can just get a totally wrong PSA result, but so relieved it was wrong. I wish the rest of you hopeful healing and best wishes in your recovery and/or management of this disease. I read a lot of your stories browsing over the weekend and sending lots of prayers, thoughts, and hope your way!
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