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  • PSA post RPP whipping around

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    Old 05-09-2021, 08:15 PM   #1
    Jaysee2173
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    PSA post RPP whipping around

    I had an undetectable PSA for 18 months post RPP... it then went to .06 then .08 in 10 days... I went back in 3 weeks abd it went back down to below .05

    Anybody seen or know about this? Drs said we don't know what's going on.. come back in 3 months.

     
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    Old 05-10-2021, 09:01 AM   #2
    Insanus
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    Re: PSA post RPP whipping around

    A lot of men have a small variance in the PSA values. The is good evidence that doing radiation before 0.10 makes for a more successful treatment.

     
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    Old 05-10-2021, 09:21 AM   #3
    Jaysee2173
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    Re: PSA post RPP whipping around

    Quote:
    Originally Posted by Insanus View Post
    A lot of men have a small variance in the PSA values. The is good evidence that doing radiation before 0.10 makes for a more successful treatment.
    I really would like to avoid if possible... research I've read says .2

     
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    Old 05-10-2021, 07:24 PM   #4
    Insanus
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    Re: PSA post RPP whipping around

    Quote:
    Originally Posted by Jaysee2173 View Post
    I really would like to avoid if possible... research I've read says .2
    https://consultqd.clevelandclinic.org/study-links-early-salvage-radiotherapy-low-psa-prostatectomy-improved-survival/

     
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    Old 05-10-2021, 07:39 PM   #5
    IADT3since2000
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    Re: PSA post RPP whipping around

    Hi Jaysee and welcome to the Board!

    First of all, congratulations on 18 months with that undetectable PSA! That's a good sign, not conclusive, but an encouraging piece of evidence that you are doing well.

    I'm thinking the lab where the blood sample is processed is having some issues, but it's possible there is a real increase hiding among those jumping numbers.

    Can you persuade your doctor to order one of the PSA tests that is reliable down to at least less than 0.01? Sometimes its hard to buck office policy, but why not try? I was stuck with a lower limit of less than 0.05 for a while, but finally the lab my doctor used sprung for more capability and now gives results to the lower level.

    Whether or not you can get that more revealing test, how about getting a follow-up in a month instead of three months? That makes sense to me.

    Good luck!

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 05-10-2021, 09:26 PM   #6
    Jaysee2173
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    Re: PSA post RPP whipping around

    Quote:
    Originally Posted by Insanus View Post
    https://consultqd.clevelandclinic.org/study-links-early-salvage-radiotherapy-low-psa-prostatectomy-improved-survival/
    Thanks for the post.. but as I said and it said... less than .2 is when best results are, not .1

     
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    Old 05-10-2021, 09:28 PM   #7
    Jaysee2173
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    Re: PSA post RPP whipping around

    Quote:
    Originally Posted by IADT3since2000 View Post
    Hi Jaysee and welcome to the Board!

    First of all, congratulations on 18 months with that undetectable PSA! That's a good sign, not conclusive, but an encouraging piece of evidence that you are doing well.

    I'm thinking the lab where the blood sample is processed is having some issues, but it's possible there is a real increase hiding among those jumping numbers.

    Can you persuade your doctor to order one of the PSA tests that is reliable down to at least less than 0.01? Sometimes its hard to buck office policy, but why not try? I was stuck with a lower limit of less than 0.05 for a while, but finally the lab my doctor used sprung for more capability and now gives results to the lower level.

    Whether or not you can get that more revealing test, how about getting a follow-up in a month instead of three months? That makes sense to me.

    Good luck!

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.


    Thanks Jim...

    Is it possible I can perm have a .04 and not be cancer? For rest of my life... I'm only 47 yo

     
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    Old 05-11-2021, 04:23 AM   #8
    DjinTonic
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    Re: PSA post RPP whipping around

    Hi jaysee, please post your pre-op PSA and your complete post-op path report.

    Thanks,

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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    Old 05-11-2021, 05:05 AM   #9
    Jaysee2173
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    Re: PSA post RPP whipping around

    I put in profile?

     
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    Old 05-11-2021, 12:04 PM   #10
    IADT3since2000
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    Re: PSA post RPP whipping around

    Hi Jaysee,

    Quote:
    Originally Posted by Jaysee2173 View Post
    Thanks Jim...

    Is it possible I can perm have a .04 and not be cancer? For rest of my life... I'm only 47 yo
    Yes. It is absolutely possible!

    That said, monitoring is important as the other possibility is that there may still be dormant cancer that could "wake up", even many years later.

    .Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    21 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA remarkably low and stable at <0.01; apparently cured (Current PSA as of 12/2/2020). (Current T 93 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 05-23-2021, 03:00 PM   #11
    francij1
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    Re: PSA post RPP whipping around

    Quote:
    Originally Posted by Jaysee2173 View Post
    Thanks for the post.. but as I said and it said... less than .2 is when best results are, not .1
    I believe the RADICALS trial has demonstrated no survival benefit for Adjuvant V Salvage radiotherapy. I believe the current direction of travel is NOT to blast tumours that cannot be detected using PSMA etc. Open to challenge on this as I have a vested interest as my PSA has just hit 0.1 6 years after surgery.

     
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    Old 05-24-2021, 08:26 AM   #12
    Prostatefree
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    Re: PSA post RPP whipping around

    In general, sooner is better for everything cancer from detection to treatment. You are way too young to be putting off treatment because you don't want it.

    Another approach is to already have a follow up treatment plan in place with an RO and have established trigger points for action. The conversation between treating at 1.0 or 2.0 would already have been discussed based on your specific profile of disease.

    At 18 months and your ager, anything over .03 and moving would have my full attention and that of the doctor responsible for the next treatment mode. Without your full profile it is difficult to speculate, but at your age and timing after RP I'd suspect local recurrence, at least.

    The idea your PSA, without a prostate, is going to settle at .04 is wishful thinking, imo. Either way, wishful thinking has no place treating cancer. Full acceptance and engagement provides the most power. Denial and delay are the two demons of cancer. And, they reside in us not the cancer. Go figure, we are our own worse enemy.

    On that note, do not use diet, supplements, vitamins or other products to manipulate your PSA. Reliable and trustworthy ultrasensitive PSA testing is your highest priority to confirm a recurrence, not to avoid it. Also, make sure you are properly hydrated for days before the test. Blood volume can affect the test.
    __________________
    Born 1953; family w/PCa-grandfather, 3 brothers;
    7-12-04 PSA 1.9; 7-10-06 PSA 2.0; 8-30-07 PSA 3.2; 12-1-11 PSA 5.7; 5-16-12 PSA 4.76; 12-11-12 PSA 5.2; 3-7-16 PSA 7.2;
    3-14-16 TRUS biopsy, PCa 1%-60% across 8 of 12 samples, G3+3;
    5-4-16 DaVinci RP, Path-65g, lymph nodes, seminal vesicles, capsule, margin all neg, G3+4, T vol 35%, +pT2c, No Incontinence-6mos, Erections-14 months;
    1-15-21 PSA less than 0.02; zero club 4.5 yrs

     
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    Old 05-24-2021, 08:50 AM   #13
    DjinTonic
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    Re: PSA post RPP whipping around

    There is always uncertainty for several reasons in the right-most digit of any lab test. My suggestion is to use a PSA test that return one more digit to the right of the digit you are following.

    For example, if, as in your case, you are concerned about the x digit in a test that returns 0.0x, you should switch to a 3-decimal test such as Labcorp's ultrasensitive PSA, which returns 0.00x (down to a lowest value of 0.014). You can then round your results to the 0.0x place with much more confidence in the result.

    If you are watching the 0.x decimal place, then a 2-decimal test like the one your are using (or, e.g. Quest's test), is fine. In this case you'd round the two decimal places to 0.x.

    The many sources of uncertainty in a test include: inherent precision of the test (at least +/- 1 in the right-most digit, if not more); sample prep; reagent prep; equipment calibration; any slight fluctuations in your PSA (even when you PSA is essentially stable); etc. That's why it's always best to draw blood the same place and use the same lab and PSA test -- you don't want to add to the sources of variability that are beyond your control.

    And finally, there can be lab errors and "outliers." It takes several results to confirm that one's trend is indeed rising and at what rate.

    Djin
    __________________
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg. for PCa, then 6-mo. checks
    6-06-17 Nodule on R + PSA rise on finasteride: 3.6→4.3
    6-28-17 Bx #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 3% RLM
    Nodule negative for PCa. Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, negative frozen sections, Duke Regional Hosp.
    SM EPE BNI LVI SVI LNI(5L, 11R): negative, PNI+, nerves spared
    pT2c pN0 pMX, G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    Dry; ED OK with sildenafil
    Decipher 0.37 (Low Risk), uPSA: 0.010 (3 mo.)...0.020 (3 yr. 7 mo.)

     
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