Rising PSA years after radical prostatectomy

Posted by olanordman @olanordman, Feb 22, 2021

I am 60 years and I had radical prostatectomy on 23rd Nov 2018. I was told out of the 15 lymph nodes taken only one was affected less than a millimetre. It was Gleason score 7B with PSA around 13 at time of surgery but 11 at time of diagnosis in June 2018.

The PSA been fluctuating between 0.09 and 0.18 since surgery on 23rd November 2018
I have no incontinence as well as Erectile dysfunction. I take hypertension medication – Norvask Amlodipine 5mg daily and Cetirizine 5mg for allergy. Below are some of the test results. I have many of these test results – a few below
Jan 2019: 0.11
April 2019: 0.11
June 2019: 0.09
August 2019: 0.12
December 2019: 0.12
April 2020: 0.12
August 2020: 0.11
October 2020: 0.17
December 2020: 0.15
February 2021: 0.18

I am worried the cancer may be returning or might have spread. I met my doctor today and expressed my concerns. He has agreed to refer me to the hospital where I had the surgery. Any suggestions based on this brief history?

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@natem

When my psa went from <.1 in 2020, then jumped to .2 in 2021, I was told I had recurrence and I underwent radiation this past Feb-Mar and 6 months Orgyvx. Unfortunately, my psa went to .3 by the time I had my treatment. I believe the Orgyvx brinds psa to undetectable, it did with me. I go back in 5 months for another. I guess that's when I see the result now that I've been off of the adt (Orgyvx).

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Not sure if the Orgovyx brings it to undetectable or just helps it. It all seems to be a bit of a crap shoot to me. It may be that the radiation knocks it down and the ADT helps keep it there, and/or (hopefully) starves off the last few stray cells.

My radiation oncologist told me that outcomes are only 3%-5% better with ADT than without. I took it under the "give me all ya got doc" principal. I'm in your shoes as well, but don't really know the docs plan for how long on the orgovyx yet. My guess is that may change depending on how well I'm tolerating it, which is pretty well.

Best of luck to you, hopefully it stays nice and low!

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@itterac

I had rp 4/18. 2 1/2 years undetectable psa. 12/20 psa at .15. Now at .28. Pre rp psa 4.51. Gleason 7 4/3 some lymph node involvement. Recommendations?

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When my psa went from <.1 in 2020, then jumped to .2 in 2021, I was told I had recurrence and I underwent radiation this past Feb-Mar and 6 months Orgyvx. Unfortunately, my psa went to .3 by the time I had my treatment. I believe the Orgyvx brinds psa to undetectable, it did with me. I go back in 5 months for another. I guess that's when I see the result now that I've been off of the adt (Orgyvx).

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Your PSA scores since the surgery have remained very low.
After 4 years its worth getting a Pet PSMA scan which picks up any possible cells that may have cancer.
This is via absorption of isotopes which show up in a different color.
I had the prostate removed in Sept 2018 but the PSA rose rapidly and reached 5.17 recently.
I had a few sessions of radio therapy to treat lymph nodes that showed up on the scans.
Your situation looks excellent but take the Psma pet scan to be at ease

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Not the same as yours, but, I had it happen in reverse. My first test they didn't do an "ultra sensitive" (I think it's called) so it came in as <.2 The following test 3 mos later they did the correct test and it was .039 I've looked through all mine and they go three decimal places but none have zero in the thousandths place, so if mine had been .040 would they have dropped it? don't know.

To answer the specific question, have not had a "0.00". As you read through these posts there are those with a lot more experience than I tell us there's a lot of different equipment out there, and when you get into the low numbers as you are, there are some variables that can effect outcomes.

I'm thinking your trying to compare apples to oranges here. What you're worried about is possible, and it's no fun to have to worry about, but I don't think you'll get a good comparison until you get the next ultra sensitive, or at least the same sensitivity, test. Hopefully it will be the the same or lower. I don't know how often your testing but I'd have another in no more than a couple months just to get a better answer.

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I apologize for posting this same question on a related discussion, but just feeling worried and would appreciate any suggestions.

I had prostate surgery in 2015. From that point up until November, 2020 all of my PSA tests came back simply as " < 0.1 '. Then in August, 2021 I think they used a different lab and the result was
"0.00".
I have since moved to a new city, and I just had a PSA test that came back as 0.04. I realize that all of my earlier tests were accurate only to 1 decimal place, but my worry is that if the 0.00 was accurate up to 2 decimal places, then the 0.04 would indicate a jump. I am hoping that the 0.00 is just their way of saying "undetectable" rather than actually being accurate through 2 decimal places.

I would like to know if any of you have had any PSA tests where the lab listed the result as being equal to 0 (I assumed they would have said < .01 instead of saying = .00 )

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@bettwils16

Where were you treated? We're in Ct at Hartford Hospital. Thinking of going to Mayo although we do have Yale few towns over

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I had my treatments locally in Charleston, WV. For me, the second time, was the importance of the PSMA PET scan using Gallium 68. The better the pictures the easier to zap metastasis. I don’t know about good radiology departments. I’ve heard about Sloan Kettering in NYC and Cornell. Find someone with a track record and with whom you’re comfortable.

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@bettwils16

Hi again, how bad was the treatment?

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It's obviously an annoyance with regard to the way it's done, every weekday at the same time for 40 days (weekends and holidays off at my treatment center). Once you get fitted (tattooed, markers inserted if necessary) it only takes about 5-7 minutes to get the treatment. The issue here is they wan't your bladder "as full as you can stand it while still being able to stay still on the treatment table." It can take a little trial and error to figure out how much water to drink and how long before treatment. Mine was 24-28 ounces one hour before.

Side effects... different for everyone, mine were VERY minor I'm told...
At first it was actually hard to notice anything different, then by about #13/15 I started to get digestive changes/symptoms. I'm a "one a day guy" normally. Then the treatments seemed to aggravate my bowels somewhat to a point where it often took a couple bowel movements before I felt emptied. My anus seemed to be sore as well. There were maybe 3 or 4 bouts of diarrhea that I couldn't otherwise explain too. By about treatment 3O I experienced some fatigue issues, particularly a few hours after treatment (mine was at 9:20 AM). I found it took a herculean effort to get through workouts too. My normal 2 mile run was really tough to get through.

Now at one and a half weeks after ending, I can already feel the difference in energy levels, soar through the runs again and don't have to struggle to end the workout. Getting through the days with no naps again as well.

Really, the only reminder at this point, is the occasional hot flash from the orgovyx. It feels like those are becoming less frequent as well. It seemed daunting when getting ready to start of course, but, now it feels like it all went pretty quickly.

Good Luck to You!

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@scullrower

I’ve had two rounds of RT: two years after prostatectomy-35 treatments and SBRT-5 rounds for pelvic lymph node metastasis, 4 nodes. My first go may have affected my bladder some but no other side effects. My second go was less than a year ago. So far so good. I once joked with the radiologist about whether the machine was turned on. I felt nothing but my PSA went from 1.0 to <0.008. The tumors sure felt it. I’m also taking Nubeqa.

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Where were you treated? We're in Ct at Hartford Hospital. Thinking of going to Mayo although we do have Yale few towns over

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@web265

Sorry about that, no, that was supposed to mean three quarters finished. I had 40 treatments, now finished.
Mike

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Hi again, how bad was the treatment?

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@bettwils16

Hi, thank you for your response. A PSMA Pet scan is going to be ordered once insurance approves. PSA now 0.24 and Radiation Oncologist (met today) suggested 39 Radiation Treatments. Once the PSMA results in, would like to go to the Mayo for second opinion. How did you do with Radiation Treatments? Thank you!

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I’ve had two rounds of RT: two years after prostatectomy-35 treatments and SBRT-5 rounds for pelvic lymph node metastasis, 4 nodes. My first go may have affected my bladder some but no other side effects. My second go was less than a year ago. So far so good. I once joked with the radiologist about whether the machine was turned on. I felt nothing but my PSA went from 1.0 to <0.008. The tumors sure felt it. I’m also taking Nubeqa.

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