Hello…wife needs help!

Options
mlmagic
mlmagic Member Posts: 2 Member
edited March 6 in Prostate Cancer #1

Been reading thru a lot of posts and so much info! I am new to this site and was hoping to get some feedback. My husband had the robotic RP in 2018 and has been getting PSA checks every 6 mo since. It’s pretty much all this time outside of about 3 months post surgery being 0.00, hovered in the .03, .04, .05 all these last 6 years, Dr saying to keep watching it, testing every 6 months, saying it’s too low to warrant treatment for a man in his 50’s. His last test a few days ago went to 0.10, from the last test in Sept, 2023 of 0.05. I just have a hard time understanding what the difference between 0.0X numbers mean, vs .1, .2, .3, .4, etc. Is 0.10 on the ultra sensitive test he has always been getting for 6 years, equal to .1, .2, etc. on some other test? I just don’t understand. I’m trying to help my hubby cope with the last test change and waiting to see his surgeon/urologist. He has only had the prostate removal surgery. No ADT, or radiation. We were always led to believe, that anything below 0.05 was undetectable and he was doing good, but to test every 6 mo. His Dr said that if it ever got to 0.10, he would need radiation as the back up plan. He told us from the beginning to be prepared to throw the kitchen sink at it. I really could use some insight, as I see so many different PSA numbers for when more treatment is necessary. Thank you so much!

-ml

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,057 Member
    Options

    Hi,

    My Internist had me doing the .1u test for years and I was always below that number. Last couple of years he had me switch to the ultra sensitive test and now my readings are .O5 over the last few tests. These tests do have a small amount of error so I would not worry too much. If your husband starts testing on an upward say .05, .07, .1, .12 ect then that is the start of a positive trend and should be monitored. If your husband also had a agressive cancer, ie: 4,5 or 6 on the Gleason scale that could also factor into the monitoring equation. If it was me trending up the first thing I would do would be a PMSA PET scan which is very good at picking up small metastatic cancer that could have spread. Once it gets above .2u usually means something is going on. If it was me, I would not let my doctor do any radiation until it was confirmed by PET scan that my cancer has spread. Just my humble non medical opinion.

    Dave 3+4

  • mlmagic
    mlmagic Member Posts: 2 Member
    Options

    Thank you Dave so much! I’ve read thru a lot of posts here to gather experience and you always answer so kindly and with good info! We have just been coasting along for 6 years now and always thinking the next test, albeit so nerve wracking for us all, will be ok. His numbers have been for 6 years bouncing along, but always seemed stable. The trends since 2019 have been .03, .04, .05, bouncing back and forth between those numbers, once it was .07 a year ago, then it went to .01, which of course we threw a party over then back to .05 in Sept, now the .10. Which took my breath away. He isn’t handling the jump very well, since he was told 0.10 was the “magic” number to need further treatment. I keep reading the PET scans can’t detect spots if PSA is under .2. and do you know the difference between 0.10 and .2? The decimal point confuses me! Thank you.

  • Clevelandguy
    Clevelandguy Member Posts: 1,057 Member
    Options

    Hi,

    I think as the cancer grows the PET scan would have a better chance of spotting the cancer at.2 vs .05. Probably just the resolution of the scanner.

    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 1,383 Member
    Options

    .1 is the same as 0.1. Or did I misunderstand part of your post?

    Significantly, different tests (ultrasensitive vs 'regular' PSA) will give (somewhat) different results. It's generally recommended to stick with one test and one lab to get consistent results. If in doubt, repeat the test.

  • On_A_Journey
    On_A_Journey Member Posts: 102 Member
    edited March 5 #6
    Options

    Hello @mlmagic. Please don't stress too much!

    The definition of 'biochemical recurrence' for someone who has had surgery is two consecutive PSA tests which have a result over 0.20, and your husband is nowhere near that yet.

    I had RP in 2015 and jumped over the recurrence hurdle two years ago, and still don't need treatment. My PSA reading jumped from 0.06 in May 2019, to 0.11 in May 2020, almost double. My oncologist then brought the intervals into 6 months, and in November 2020 my PSA was 0.16. Something was obviously stirring, and I have been on three monthly visits since then.

    PSMA Pet Scans generally don't pick anything up until PSA reaches somewhere near 1.0 or so, but this is only a rough guide. I've had three of them, all negative, so obviously they were unnecessary at the time. My PSA is currently 0.59, nine years after surgery, and there is still no need for action yet.

    You and your husband seem to be years away from even being forced into making a decision about treatment. Please keep the regular testing and follow-up appointments going though. His doctor will probably bring the follow-ups into 3 monthly intervals. Just go along for the ride. There is no need for intervention yet.

    There are three factors to consider. PSA readings, PSA doubling time, and original Gleason score. Combined, these will determine a course of action in the future, but I'm pretty sure that you're not there yet. 😉 ❤️

  • Old Salt
    Old Salt Member Posts: 1,383 Member
    Options

    When to start salvage radiation after biochemical failure is an ongoing topic.

    Researchers from Johns Hopkins concluded that it's better to initiate radiation when PSA is less than 0.5 ng/ml:

    Salvage Radiation after Prostatectomy: Watch the PSA! - Johns Hopkins Medicine

    Here is the conclusion from the published paper (The Prostate 83:190 (2023)):

    Initiation of salvage RT while PSA levels remain ≤0.5 ng/ml was associated with improved MFS. Consideration for salvage RT initiation while PSA levels remain low is warranted to minimize risk of future prostate cancer metastasis.