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Thread: Bio chemical reoccurrence

  1. #21
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    Again, thank you for everyone’s input.

    I emailed my oncologist last night asking about a psma pet prior to salvage radiation and she replied that wasn’t a test she requests and to ask the radio oncologist.

    After reading your replies I am leaning towards the radiation treatments.

    I guess since I went five + years at 0.0 to only a 0.2 I wasn’t taking it as that serious, especially after being told I was cured.

    I will ask the radiologist for the psna pet and see what he says.

    Thanks again all.

  2. #22
    Quote Originally Posted by PeterG View Post
    I guess since I went five + years at 0.0 to only a 0.2 I wasn’t taking it as that serious, especially after being told I was cured.
    .
    A 0.2 difference would be not much more than a rounding error- for a man with a Prostate. But you don't have one, so this small but rising amount is a lot more likely to be produced by a prostate cancer.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  3. #23
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    Quote Originally Posted by PeterG View Post
    Again, thank you for everyone’s input.

    I emailed my oncologist last night asking about a psma pet prior to salvage radiation and she replied that wasn’t a test she requests and to ask the radio oncologist.

    After reading your replies I am leaning towards the radiation treatments.

    I guess since I went five + years at 0.0 to only a 0.2 I wasn’t taking it as that serious, especially after being told I was cured.
    You actually didn't go from 0.0 to 0.2. Your test did. It was never 0.0. It was most likely a <0.10 test and called undetectable. It is always good practice to get a copy of the test report. It typically gives you the limits of the test, and the meaning of the results. It will never say 0.0. Your value could have been anywhere below the test limit, but never zero, only listed as undetectable below the test limit. Some doctors may not explain this, and just report as undetectable or essentially zero which it is not. If your doctor did this get a new doctor.

    Also, cancer cure is always declared in the context of time, i.e 5 years, 10 years, etc. I go into all of this so you may be an infromed advocate for prostate cancer awareness going forward.

    There are different tests available that can measure PSA to more sensitive levels than one decimal point. You were never zero. The most sensitive ultrasensitive test after RP can measure background PSA down to the thousands, for example 0.004. Your PSA has most likely been rising slowly this whole time. Most institutions measure to <0.1. Most people in the know concerned about BCR measure with any variety of ultrasensitive test from the most sensitive 0.001, or <0.02 (mine), or <0.05, etc.

    Most sit up and take action around 0.10. Waiting to 0.20 is pushing conventional wisdom and a red flag.

    Some small studies indicate treating as early as 0.03 has better outcomes for those with adverse conditions.
    Born 1953
    family w/PCa; grandfather, 3 brothers
    07-12-04 PSA 1.90
    07-10-06 PSA 2.02
    08-30-07 PSA 3.20
    12-01-11 PSA 5.69 Internist recommends urologist, I say no
    05-16-12 PSA 4.76 manipulate w/diet & supplements
    12-11-12 PSA 5.20, Health system changes to 3 years on testing
    03-07-16 PSA 7.20 Internist adamant on urologist
    DRE smooth, enlarged
    03-14-16 TRUS biopsy-prostatic adenocarcinoma 1%-60% across 8 of 12 samples, Gleason 3+3=6
    03-31-16 MRI pelvis w/o dye
    05-04-16 DaVinci prostatectomy, nerve sparing, Dr. Kent Adkins - recommend
    Final Path; weight 65g, lymph nodes, seminal vesicles, capsule, margin all negative, Gleason 3+4=7, Tumor volume 35%, +pT2c
    Catheter out - 16 days
    Incontinence at 6mos is minimal – no pad
    Cialis 3x/wk & Viagra on occasion
    Begin self-injection needle therapy for erections, stop after 6 due to onset of Peyronie’s
    Erections 100% - 14 months
    5-21-19 PSA <0.02, Zero Club 3.5 years

  4. #24
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    Quote Originally Posted by Another View Post
    You actually didn't go from 0.0 to 0.2. Your test did. It was never 0.0. It was most likely a <0.10 test and called undetectable. It is always good practice to get a copy of the test report. It typically gives you the limits of the test, and the meaning of the results. It will never say 0.0. Your value could have been anywhere below the test limit, but never zero, only listed as undetectable below the test limit. Some doctors may not explain this, and just report as undetectable or essentially zero which it is not. If your doctor did this get a new doctor.

    Also, cancer cure is always declared in the context of time, i.e 5 years, 10 years, etc. I go into all of this so you may be an infromed advocate for prostate cancer awareness going forward.

    There are different tests available that can measure PSA to more sensitive levels than one decimal point. You were never zero. The most sensitive ultrasensitive test after RP can measure background PSA down to the thousands, for example 0.004. Your PSA has most likely been rising slowly this whole time. Most institutions measure to <0.1. Most people in the know concerned about BCR measure with any variety of ultrasensitive test from the most sensitive 0.001, or <0.02 (mine), or <0.05, etc.

    Most sit up and take action around 0.10. Waiting to 0.20 is pushing conventional wisdom and a red flag.

    Some small studies indicate treating as early as 0.03 has better outcomes for those with adverse conditions.
    Wow you are 100% correct, I was always told undetectable. What you’ve told me is downright frightening, as if even with my RP I just kicked the can down the road for 6 years.
    To think that because of the low quality testing I have been waiting for my cancer to meet their test criteria.

    Thanks for your input.

  5. #25
    Top User garyi's Avatar
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    Hi Peter...you're getting some very good advise.

    Where and when BCR really occurs is open to much medical debate, causing more than a little hysteria and over-treatment at very low readings. But 0.20 is not a low reading.

    Is it possible for you to get an ultra sensitive uPSA blood draw...maybe at Labcorp? At the same time try to obtain a PSMA CT PET Scan. Don't rely on your doctor to find a clinical trial, you'll need to do the leg work yourself. MT gave you an excellent link to get started.

    Also start researching radiation options, probably combined with hormone therapy, and go to a prostate cancer center of excellence. Sorry that you discovered that there is no absolute 'cure' for prostate cancer. Good luck!
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19, .116 11/19
    We'll see....what is not known dwarfs what is thought to be fact

  6. #26
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    Quote Originally Posted by garyi View Post
    At the same time try to obtain a PSMA CT PET Scan.
    My radiation oncologist told me that PSMA CT PET scans are about 70% effective at PSA levels around 0.4-0.5. I don't think they are useful at lower PSAs - certainly not 0.2. So most folks have to make the decision to get radiation to the prostate bed, or the prostate bed and lymph nodes - with or without ADT - will full knowledge that there may be cancer in these areas OR outside these areas OR both inside and outside these areas. Waiting until you can see where your cancer is on a PMSA CT PET scan - say PSA 0.5 - simply tells you where the scan can see it and not where it can't see it. Also, waiting until your PSA reaches 0.5 allows more time for cancer, that may be confined to the prostate bed today, to go on to metastasize over the next several months - so waiting to act is rarely a good idea. IMHO, and as others have stated, you need a good radiation oncologist and perhaps a second opinion from a different one to get a plan of action together - post-haste.
    DOB: 10/1962

    6-01-15 PSA 2.5
    Having urination flow issue in first half of 2018. Flomax 6/1-6/21 - no help.
    6/25/18 PSA 14.25; Cipro 14 days
    8/1/18 PSA 17.44; rec. Urologist appt
    8/15/19 First Uro appt. + for bacteria. Cipro 4 weeks
    10/2/19 PSA 22.4; Still + for bacteria. Antibiotics 4wks
    12/28/19 PSA 27.5
    1/15/20 Biopsy results 6/12 cores positive - all left side; GS 4+3
    1/18/19 Bone scan and CT scan both negative
    2/15/19 Di Vinci RP
    2/18/19 Path report pT3a, GS 4+3 (60%+35%) 5% GS5, SM +, EPE +; LVI -, SVI -, LNI(9) - ; Tumor size: 3.5cmx3.5cmx1.5cm; single foci left side; right side nerves spared; SM+ at apex limited <1mm; benign prostatic cells at spared right nerve bundle. Prostate size 45gm.
    Cath out at 7 days: 100% continent with some ED; ok with 10mg Cialis.
    Decipher 0.73

    3/26/19 (6 weeks) 0.033
    5/10/19 (3 months) 0.010
    8/02/19 (6 months) 0.019
    8/30/19 (7 months-recheck) 0.024
    9/26-11/19/19 eSRT (70.2 Gy)

  7. #27
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    Quote Originally Posted by PeterG View Post
    Wow you are 100% correct, I was always told undetectable. What you’ve told me is downright frightening, as if even with my RP I just kicked the can down the road for 6 years.
    To think that because of the low quality testing I have been waiting for my cancer to meet their test criteria.

    Thanks for your input.
    That said, allowing your PSA to reach 10 before taking treatment action puts you at risk of a prolonged cancer battle. Now even, your first reaction was not to have follow up treatment while you wait again.

    I would not use the term low quality testing. It's more of the same for you. This puts the responsibility somewhere other than yourself. The testing used to measure PSA is the single most effective and powerful screening tool we have against the disease. The problem lies with those who fail to heed it and underestimate the risk of doing so. Your testing at 0.2 and even considering the possibility of continuing to wait at such a young age is another example of this, as was your more fateful sitting on a 10 in the beginning.

    In hindsight, you now appear to have made the same mistake of waiting again. This is not uncommon. We are who we are and we are powerful in it to the point of own faults. Maybe for you, you think you are being cautious. What stops us can be anything. It's all made up anyway so it can be anything we choose; fear (not me), arrogance ( I'm smarter than others), laziness (I have time), ignorance (I didn't know), irresponsible (not my job), inconvenience (too busy doing important things), judgment (someone elses fault and most commonly the doctor's or the testing); etc.

    Cancer is unforgiving. It doesn't care about you, or how you think this should go, or the convenience of what you want to happen, or whose advice you choose to accept, or if you accept the seriousness of cancer at all. Low acceptance is the biggest risk factor in cancer. The possibility for you is to gain an insight into how you are in this, and it makes a difference for you going forward in action powerfully.
    Last edited by Another; 11-16-2019 at 11:25 AM.

  8. #28
    Peter, getting PCa treatment age 47 isn't exactly late and low accuracy PSA testing post RP unfortunately all too common. Your cancer won't improve from unnecessarily blaming yourself. Here in Québec I called labs for a sensitive PSA only to be told off I needed a referral and the system deemed me incapable of judging the need myself. At some gereralist's office I was then told referrals for sensitive PSA testing didn't exist same as such tests. I am in the 1% of Québec patients not buying this BS.

    On your cancer, the very good news it's growing slowly. For some it takes only 6 weeks for a jump from 0.2 to 0.5, when PET CTs start picking up. For others, hopefully including yourself, it's years and therefore it would be great having some better data. Not your fault if there's really only the jump from 0 to 0.2.

    So maybe you want to go for SRT now, but do take the time to look for a good RO center.

    On another note, I've now seen several cases of early disease in people with exposure to cold temperatures, assuming this was the case for you as a fisherman? My PCa seems to have taken off right after my arrival here in Québec with winter hiking and skiing.

  9. #29
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    Quote Originally Posted by KarlEmagne View Post
    Peter, getting PCa treatment age 47 isn't exactly late and low accuracy PSA testing post RP unfortunately all too common. Your cancer won't improve from unnecessarily blaming yourself. Here in Québec I called labs for a sensitive PSA only to be told off I needed a referral and the system deemed me incapable of judging the need myself. At some gereralist's office I was then told referrals for sensitive PSA testing didn't exist same as such tests. I am in the 1% of Québec patients not buying this BS.

    On your cancer, the very good news it's growing slowly. For some it takes only 6 weeks for a jump from 0.2 to 0.5, when PET CTs start picking up. For others, hopefully including yourself, it's years and therefore it would be great having some better data. Not your fault if there's really only the jump from 0 to 0.2.

    So maybe you want to go for SRT now, but do take the time to look for a good RO center.

    On another note, I've now seen several cases of early disease in people with exposure to cold temperatures, assuming this was the case for you as a fisherman? My PCa seems to have taken off right after my arrival here in Québec with winter hiking and skiing.
    I never heard of cold weather being a factor. In my early 20”s I was constantly exposed to cold weather to the point I have minor nerve damage in my hands and feet from repeated frostbite.

    However, I joked with a friend of mine who also has PC that perhaps we both got it from sitting on heated air ride seats .
    Blood test 10.0
    DRE and Biopsy
    3 0f 12 cores 3+3
    AS 2 Years with blood every 3 months, stable at 10.1
    2nd Biopsy 9 of 12 cores 3+3
    RARP 11/26/13 by Dr. S Conely
    Catheter out in 7 days
    Pathology 3+4
    1 light pad at 1 week past catheter
    Continence at 3 weeks no pads
    PSA undetectable at 7 weeks
    At 13 Months Erections both with and without meds, its all coming together .
    July 2019 psa detected at.2
    Sept psa .2
    Oct psa .2
    Nov ct negative
    Nov Pet negative
    Nov Radiologist consult

  10. #30
    Top User garyi's Avatar
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    Quote Originally Posted by IndyGuy View Post
    My radiation oncologist told me that PSMA CT PET scans are about 70% effective at PSA levels around 0.4-0.5. I don't think they are useful at lower PSAs......you need a good radiation oncologist and perhaps a second opinion from a different one to get a plan of action together - post-haste.
    Good advise....a PSMA CT PET scan can't hurt, isn't easy to find, so start now. Here is some background:

    Based on clinical trials, below are various PET indicators in approximate rank order of their sensitivity to detect prostate cancer, and their specificity for detecting it exclusively:
    F18-DCFPyL
    F18-DCFBC
    Ga68-PSMA-HBED-CC (Ga68-PSMA-11)
    Fluciclovine (F18 - FACBC)/ Axumin
    C11-Choline/ C-11-Acetate
    F18-Choline
    NaF18
    F18-FDG
    The following table shows the percent of patients who had metastases detected at various PSAs. F18-DCFPyL is much better than Ga68-PSMA at low PSA.

    https://pcnrv.blogspot.com/search/label/F18-DCFPyL

    The more digging you can do for yourself the better!
    72...LUTS for the past 7 years
    TURP 2/16,
    G3+4 discovered
    3T MRI 5/16
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4,
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP 7/13/17 Dr. Gonzaglo @ Univ of Miami
    G3+4 Confirmed, Organ confined
    pT2 pNO pMn/a Grade Group 2
    PSA 0.32 to .54 over 3 months
    DCFPyl PET & ercMRI Scans - 11/17
    A one inch tumor still in prostate bed = failed surgery
    All met scans clear
    SRT, 2ADT, IMGT 70.2 Gys @1.8 per, completed 5/18
    Radiation Procitis, and Ulcerative Colitis flaired after 20 years
    PSA <.006 9/18, .054 11/18, .070 12/18, .067 2/19, .078 5/19, .074 7/19, .081 9/19, .116 11/19
    We'll see....what is not known dwarfs what is thought to be fact

 

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