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    Old 07-29-2020, 07:34 PM   #1
    Oldbro
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    Itís back

    Iím new here. Canít find the group that help me 5 years ago when my PSA started to rise. Had early stage prostate cancer at age 64. I had been suffering from Chronic Prostatitis for close to 40 years so I wasnít surprised when a biopsy found cancer in one sample first time but none some months later in the second biopsy. The doc said we would watch and see how my condition progressed, PSA was 5 at the time. I said if I have it removed my prostatitis would end and weíd address two issues. He said thatís not what heíd recommend but I had the RP robotically just before Thanksgiving 2015. My PSA drop to undetectable until December 2019. It came in at .007. Doc says there were probably cells left at the surgical site and we may need to do radiation.
    The surgery left me impotent and a subsequent incisional hernia repair left me with GIRD for the last 3 years.
    Iím tired and beginning to feel that more treatment will just make thing worse. No one in my family has died from cancer. My father had a hi PSA at age 65 and told the doc he was not doing anything about it. Never got retested and will be 91 this October. His dad died in his sleep 94. My Mom smoked for 71 years and died from COPD at age 84.
    Ive cared for 2 non blood relatives who have died of metastatic cancers in the bone. Itís not something I would wish on anyone. Iím just concerned that radiation brings its own issues to the table and donít want those possibilities. Im scheduled for my next PSA soon ,it may or may not be gaining on me, we'll see. If it is, from what I understand, it doesnít mean cancer. It may not even be emanating from the surgical site if it is hot.
    Just trying to understand how others here have dealt with their situations when treatment takes unexpected turns.
    Thanks all.

     
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    Old 07-30-2020, 07:58 AM   #2
    OldTiredSailor
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    Re: Itís back

    I am 73 and now 2-years post-RP with a 0.06 ĶPSA that was doubling every 9-months but has now slowed down. My MO and surgeon both advocated for local radiation during the first 18-months after my RP due to the rise in PSA from 0.018 (4-months post RP) to 0.035 (12-months post-RP).

    I did an enormous amount of reading and research about the prognostic value of very small but rising PSA in a post-RP man. I am convinced that waiting to make the SRT decision is a viable option for older men.

    One of the major factors that helped me delay the SRT decision was the Decipher Post-RP genomics result. Decipher tells me, given my PCa's specific genomic expression, that I have about a 4% chance of metastasis in the next 5-years and less than a 5% chance of a PCa specific death in 10-years.

    My PSA upward trend has slowed to the point, Johns Hopkins doubling time > 12-months, that most research says there is little chance of metastasis during the next 10 or so years.

    You should check with the RP surgeon to see if there is some PCa tissue cells to be submitted to Decipher. There is a great deal of current research that validates the use of Decipher genomics in making the SRT decision.

    One bit of research uses CAPRA-S scores, your specific pathology report, and Decipher to provide probabilities of metastasis and PCa death. In my case there has never been a PCa specific death in the 10-years of tracking.

    I am still getting a ĶPSA test every three months and have committed to SRT if I see two consecutive test results above 0.1.

    I think you have time to do more research and postpone your decision.

    I have a vast amount of detailed research results I can share if you need more details.

    One SRT fact that really bothers me is that men older than 70-years who receive radiation therapy for localized recurrent PCa have a much greater overall mortality rate at 10-years than the same aged men, with the same localized recurrent PCa, who did not receive SRT.
    __________________
    DOB: July 1947
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported
    Decipher RP = 0.47, which is .01 above a LOW risk

    Post-RP PSA
    10/3/18 0.021 01/4/19 0.018 04/03/19 0.022 06/26/19 0.028 10/1/19 0.035 3/14/20 0.050 4/16/20 0.055 7/8/20 0.060

     
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    Old 07-30-2020, 10:02 AM   #3
    Oldbro
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    Re: Itís back

    Thank you, very helpful. I have a face to face appt in 4 weeks to get next test. I wanted face to face with wife and daughter, both docs, there to help me decide my direction.

    Life is made up of choices and I have no regrets. I have more issues now than before my RP and just trying to decide if additional treatment is worth it.
    I spoke to a number of my wifeís patients about their various decisions on PC treatment. Results were varied.

     
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    Old 07-30-2020, 10:16 AM   #4
    ASAdvocate
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    Re: Itís back

    OTS, your last paragraph is really a head-scratcher. It sounds counter-intuitive.

    When convenient for you, can you post a link to that study? Thanks.

     
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    Old 07-30-2020, 11:41 AM   #5
    OldTiredSailor
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    Re: Itís back

    Quote:
    Originally Posted by ASAdvocate View Post
    OTS, your last paragraph is really a head-scratcher. It sounds counter-intuitive.

    When convenient for you, can you post a link to that study? Thanks.
    I'll provide some more details later but here is a first, easy to find, reference:

    Walsh 2018 (4th Edition) page 322 writing about Adjuvant Radiation Therapy:

    Quote:
    In Contrast, the largest study, which was carried out by EORTC, failed to demonstrate any improvement in freedom from metastases, local recurrence or overall survival. Notably, it did demonstrate a significant decrease in survival in two groups who received radiation, men over age 70, and men who had penetration of cancer through the capsule but negative margins.
    Italics are in the text from Walsh.

    He does, however, later state that SRT at the time of rising PSA did have improved overall survival for all men.

    Abdollah (2015) showed that ART only offered an improvement in Overall Survival (OS) when given to men < 70-years old. Only men < 70-years old with two or more adverse pathologies (G8 or worse, pT3 or 4, LNI) had a lower PCa specific survival when given ART.
    __________________
    DOB: July 1947
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported
    Decipher RP = 0.47, which is .01 above a LOW risk

    Post-RP PSA
    10/3/18 0.021 01/4/19 0.018 04/03/19 0.022 06/26/19 0.028 10/1/19 0.035 3/14/20 0.050 4/16/20 0.055 7/8/20 0.060

     
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    Old 07-31-2020, 05:54 AM   #6
    DaveinMaryland
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    Re: Itís back

    My RO wanted to see a definite rise in my post surgical PSA before initiating SRT. He was in no hurry to do it unless necessary. Once detectable at .06, the next test 3 months later was .07. Maybe a rise, maybe not. 3 months later it was .10. So we pulled the trigger.

    The next question was whether to add 6 months ADT in conjunction with the radiation starting it 1 month prior to SRT. This will be a decision you will have to make. With intermediate grade there was some mixed information on how much benefit there is to adding it to the radiation treatment.

    I opted to do it because I am of the mindset of throwing everything possible at it so I won't question why I didn't do something when I had the chance.

    I came through with flying colors with very little side effects from either the ADT or radiation.
    __________________
    Dx at age 63 March 2017
    Prostate Cancer 3+4 Open RP May 2017
    PSA detectable May 2018, single digit .1 2 digit .06
    August 2018 2 digit .07
    November 2018 2 digit .10
    6 month Lupron Shot Dec 2018
    Salvage Radiation Jan - Mar 2019
    Nov 2019, June 2020 PSA undetectable

     
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    Old 07-31-2020, 06:18 AM   #7
    IADT3since2000
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    Re: Itís back

    Hi Oldbro and welcome to the Board!

    I'm thinking you are doing fine. You posted in part:

    Quote:
    Originally Posted by Oldbro View Post
    ... My PSA drop to undetectable until December 2019. It came in at .007. Doc says there were probably cells left at the surgical site and we may need to do radiation.
    That .007 level - let's call it the "Bond, James Bond" level - is actually excellent. I'm curious what your previous levels were that were referred to as "undetectable." Now if you meant to type .07, that a much different story, but I'm trusting that .007 is the right number for your ultrasensitive test.

    Ultrasensitive PSA testing has been a key component of managing/treating my cancer, now apparently cured, since I was diagnosed in 1999, and I am familiar with advice and research on such testing. At least until recent years, leading doctors specializing in prostate cancer who were pioneers of ultrasensitive testing even before it was cool advised that they were unaware of any clinical value of a PSA below <0.01. That view may have changed, but I am not aware of any study documenting an advantage in decision making for results below that level. There is a substantial body of research on ultrasensitive PSA levels of <0.01 and up to <0.05, and higher.

    If it were me (a fellow patient with no enrolled medical education, but having paid close attention to this disease and research for more than 20 years), I would hold off on radiation at least until your PSA rose to .04, which is a quite solid but not completely conclusive indicator of recurrence in the context of a rising trend, or arguably even a bit higher. That would still be time for highly effective intervention with radiation. A good book that addresses salvage radiation, among many other topics, is "The Key to Prostate Cancer," 2018, Dr. Mark Scholz, MD, a medical oncologist, with 29 other authors, especially the "Indigo" (recurrence) section (chapters 31-36). Chapter 32, "Radiation for Indigo [recurrence]," by Dr. Christopher Rose, MD, is particularly on point. Some doctors have advised waiting until the PSA rises to a higher level where advanced imaging can spot the likely sites for metastasis, but that means delaying radiation, which is somewhat more effective when used earler, with a lower PSA. By the time you need radiation, if ever, reliable imaging may have become feasible at levels below 1. In 2016, Dr. Eugene Kwon, an expert in making use of carbon 11 (C-11) PET/CT imaging, advised waiting until PSA was in the range of 1.5 to 2.0 (PCRI's 2016 Conference on Prostate Cancer DVD set, Disc 2, minutes 43:16-48:31); imaging has improved since then, but results are still somewhat chancy when the PSA is <1, and radiation docs like to pull the trigger when the PSA is .5 or lower, so there's a tradeoff between more effective radiation and more precise targeting of recurrent cancer sites, with no perfect answer at this time. This issue may come up in September's free online 2020 PCRI conference, described in another thread.

    Good luck!

    Ö.Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    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 T 99 6/5/20.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs.

     
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    Old 07-31-2020, 08:24 AM   #8
    Southsider170
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    Re: Itís back

    .007 is still very low indeed, its hardly time to panic.

    You didn't mention in your OP what your post-RP pathology was.

    But especially if it was relatively low risk , a GS of 6 or 7, it really wouldn't indicate a need for further treatment.

    If you are dissatisfied with your recovery as far as sexual function or urinary continence, you should really consult your urologist on that. At least see what they can do for you.

     
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    Old 07-31-2020, 11:39 AM   #9
    DjinTonic
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    Re: Itís back

    Welcome to the Forum, Oldbro.

    No laboratory or scientific journal would ever write a PSA value that started with a decimal point.

    You did not clear up whether you forgot to write the leading zero, and your last PSA was 0.007, or whether you wrote the leading zero and misplaced the decimal point, and your last PSA was 0.07. This is always an ambiguity for the reader when the leading zero is omitted. Please also state the "undetectable" value you previously had (different tests have different lower limits of detection).

    Decimal numbers below 1 should be written with a leading zero if the quantity they represent can go higher than 1. Baseball batting averages (e.g., .285) and bullet calibers (e.g. .22) are traditionally written without a leading zero, but these are examples of decimal that don't go higher than 1.


    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
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk: 2.4%, 10-yr PCa-specific mortality: 3.3%
    uPSA: 0.010 (3 mo.)...0.013 (2 yr. 10 mo.)

     
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