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    Old 10-30-2021, 04:24 PM   #1
    mehappy2
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    Exponentially rising PSA..

    I have been plotting my PSA using spreadsheet for years.
    I normally ride between the 1.0 to 2.0 zone.

    PSA
    1.7 10/2019 (last normal number)
    2.2 10/2020
    2.9 03/2021 (MRI ordered. Neg)
    3.3 09/2021 (ExosomeDx ordered. Neg) (2 Weeks antibiotics)
    3.5 10/2021 (after antibiotic check.. still upwards)

    PSA velocity 1.21 /year (JHU web calculator)
    PSA doubling 1.6 years

    If you plot this out, it will trace out what seems to be a textbook exponential track. I know my numbers in an absolute sense are still lower, but the instant skyward move is horrifying. It looks very powerful.

    But I have the Negative MRI and the Negative Exosomedx.

    MRI was a 3T machine and the reader was a prostate pro.

    Anybody have any comments on how this can happen?

    The PSA curve looks like Death.

    Thanks!

     
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    Old 10-31-2021, 07:58 AM   #2
    Southsider170
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    Re: Exponentially rising PSA..

    PSA isn't specific to prostate cancer, you should know.

    And PSA does tend to rise over time, as the prostate naturally gets larger as a man ages. A 20 year old has a prostate the size of a walnut, by the time he reaches 40, it the size of a golf ball, the size of a lemon by the age of 60, and the size of a softball at age 80.

    Since you've had MRI and other tests, the doc sees a biopsy as pointless at this point in time. However, if it will make you feel better about it and less anxious, it would still be worth it to get it. Anxiety isn't a joke.

     
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    Old 10-31-2021, 08:51 AM   #3
    DjinTonic
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    Re: Exponentially rising PSA..

    MRIs miss existing prostate cancer for two reasons: (1) lesions can be too small to be picked up and (2) reader error. Usually uros who can't find a PSA-rise cause such as infection and who think the rise/trend is larger than BPH can account for want a biopsy in a biopsy-naive man with a negative MRI.

    If this were me, I would ask for a saturation biopsy (one with a high core-count).

    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.)...0.023 (4 yr. 6 mo.)

     
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    Old 10-31-2021, 11:27 AM   #4
    Prostatefree
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    Re: Exponentially rising PSA..

    Using antibiotics as a screening tool for prostate cancer is bad medicine.

    Get a biopsy, and as Djin recommends, a saturation biopsy.

    Also, the ExosomeDx test requires first catch urine, meaning the urine has to have been sitting in the prostate for at least an hour.

     
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    Old 10-31-2021, 03:05 PM   #5
    mehappy2
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    Re: Exponentially rising PSA..

    ProstateFree...
    That is exactly what happened to me.
    I went into the office that day full of urine.
    As I was led in, I asked the girl if they needed urine. SHe said, I don't know, but go in the bathroom and pee in the cup.

    15 minutes later, I was offered the ExosomeDx first catch cup and pee'd again.

    So, I saw on the Exosomedx website under FAQ.
    It said to wait 60 minutes before urinating.

    So I called the Exosome company. THey told me it's not a particle count type thing.
    It's a particle type measurement.

    They said if you did get a number back, then it will be accurate if you urinated early.
    If there were not enough particles to do the measurement, it would come back with a no-result or unable to measure.

    Should I continue to doubt the validity of the Exosomedx test?

     
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    Old 10-31-2021, 03:07 PM   #6
    mehappy2
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    Re: Exponentially rising PSA..

    Southsider..

    So if PSA rise is due to simple growth of the prostate over the years, shouldn't the PSA rise gently over the years?

    My curve is in the 1-2 range and then in the last 12 months, it has taken a commanding northward turn with no signs of stopping.

     
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    Old 10-31-2021, 03:12 PM   #7
    mehappy2
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    Re: Exponentially rising PSA..

    Djin Tonic ... (lol on the name)

    THe Urologist has offered me either 12 count or 30 count biopsy.

    Personally, I wanted this thing out 9 months ago when I first walked into this urologists office.

    He had a student in with him,
    I asked what needs to be done to have your prostate removed?

    They both gasped, like they were looking at Freddy Kruger.

    And yes, I still want it out and am being forced to keep this non-essential organ between my legs... for what reason, I do not know.


    ANy tips on what to expect on the saturation biopsy?

     
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    Old 10-31-2021, 07:49 PM   #8
    DjinTonic
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    Re: Exponentially rising PSA..

    You can do you own research at pubmed or googlescholar, but here is a recent study:

    How Many Cores Should be Obtained During Saturation Biopsy in the Era of Multiparametric Magnetic Resonance? Experience in 875 Patients Submitted to Repeat Prostate Biopsy

    https://www.sciencedirect.com/science/article/abs/pii/S0090429519310222

    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.)...0.023 (4 yr. 6 mo.)

     
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    Old 10-31-2021, 08:34 PM   #9
    ASAdvocate
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    Re: Exponentially rising PSA..

    Quote:
    Originally Posted by mehappy2 View Post
    Djin Tonic ... (lol on the name)

    THe Urologist has offered me either 12 count or 30 count biopsy.

    Personally, I wanted this thing out 9 months ago when I first walked into this urologists office.

    He had a student in with him,
    I asked what needs to be done to have your prostate removed?

    They both gasped, like they were looking at Freddy Kruger.

    And yes, I still want it out and am being forced to keep this non-essential organ between my legs... for what reason, I do not know.


    ANy tips on what to expect on the saturation biopsy?
    You should not be set on any particular treatment until you have a diagnosis and staging. I was diagnosed with prostate cancer in 2009, and no urologist, anywhere, has ever suggested that I should have treatment for my low risk pathology. Treatments often impact quality of life, and should never be rushed in to.

    The Precision Point transperineal biopsy is the new game-changer for prostate cancer diagnosis. No operating room, no general anesthesia, no antibiotics, no infections, no sepsis, and access to the anterior region of the prostate. If your practice does not offer this, find one that does. I have had two of them at Johns Hopkins, where they are standard procedure.

    Also, just in case some prostate cancer is eventually found, I recommend that you buy of copy of Dr. Mark Scholz' The Key to Prostate Cancer. He spends several chapters explaining how your risk level is determined from your biopsy pathology. He interviewed 30 prostate cancer experts and presents their descriptions of the treatments that they provide for men at specific risk levels.
    __________________
    In Active Surveillance program at Johns Hopkins since July 2009.

    Seven biopsies from 2009 to 2021. Three were were positive with 5% Gleason(3+3) found.

     
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    Old 11-02-2021, 10:08 PM   #10
    IADT3since2000
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    Re: Exponentially rising PSA..

    Hi mehappy2,

    In view of your urologist's reluctance, I'm wondering if he/she is seeing some important facts that are not in what you have provided. A critical fact is the size of your prostate, and an mpMRI provides a reliable estimate of size. The rule of thumb is that every cubic centimeter (cc) or gram of prostate size generates about 1 unit of PSA from non-cancerous prostate tissue. Therefore, a prostate of 35 cc, pretty normal, would generate a PSA of about 3.5. As suggested earlier, prostates enlarge as we age, so age is also a clue. If you are 40, then the pattern of your PSA elevation, considering your history, would be quite concerning. If you are 65, it would shade the picture more toward a BPH situation, possibly with a bit of infection, and unfortunately not ruling out a bit of cancer, probably small.

    You are clearly very worried about this, even using the word "death" for what you fear your situation might be. When you don't know much about the disease, that is kind of par for the course (speaking from experience, which unfortunately proved as threatening as the concern in my own case for years). But the reality for the vast majority of patients is far more favorable these days as a result of the enormous progress that has been made over the past several decades and that continues to be made. Check out the statistics (from the SEER database) that are used by the American Cancer Society to inform patients. The averaged survival rate for patients diagnosed with all kinds of cases at 10 years is virtually 100%, and even for those with regional, but not distant spread at diagnosis, the survival statistic is in that neighborhood. Fortunately these days, only a small percentage of us are diagnosed with distant spread, and my impression is that that percentage is miniscule for men who have been diligent about PSA testing as you have been. Moreover, survival at 15 years from diagnosis for all men, averaged, is in the mid-90s, with many of us living many more years beyond that and outliving the disease. Additionally, further progress is being made every year, and 15 years from now, prospects will almost certainly be much better than the current awesome level already achieved - best of any major cancer.

    One other point: patients eager to get it out and in a jar basically strike me as mainly wanting to have the problem over with, which is also pretty understandable, even if not realistic and sometimes not wise. Some of us do that and very successfully, but for others, there can be very significant impacts on quality of life. Those impacts are well worth it if treatment is really necessary, but, often these days, active surveillance is a superior option if the cancer is mild. Also, radiation is at least as good an option as surgery unless there are specific reasons that make it less desirable. For many of us, living with the disease if under control can be an excellent approach if your personality allows that.

    Regarding infection/inflammation, which can really boost PSA and do it quickly, doctors often have a hard time pinning down the cause. Infection/inflammation, perhaps with BPH also, and unfortunately perhaps with cancer also, could be causing the PSA elevation.

    If you do need a biopsy, the earlier advice covers many good points.

    If you don't know the size of your prostate, you can get that information. Size is very important in analyzing the possibilities.

    Good luck sorting this out.

    ….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, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 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. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 11-03-2021, 04:32 AM   #11
    Prostatefree
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    Re: Exponentially rising PSA..

    Nothing wrong with a desire to reduce the risk of cancer by removing the prostate, imo. Stay on it.

    The bigger risks are those who deny and delay or consistently promote one path as better than another.

    If you are fortunately enough to have a low risk cancer and the opportunity to "cure" it, do so, imo.

     
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    Old 11-03-2021, 08:04 AM   #12
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    Re: Exponentially rising PSA..

    Quote:
    Originally Posted by Prostatefree View Post
    Nothing wrong with a desire to reduce the risk of cancer by removing the prostate, imo. Stay on it.

    The bigger risks are those who deny and delay or consistently promote one path as better than another.

    If you are fortunately enough to have a low risk cancer and the opportunity to "cure" it, do so, imo.
    You constantly promote prostate removal, in every instance, with no mention of the often drastic reduction in quality of life from surgery.

    I have enjoyed twelve years of high quality life since diagnosis because I figured out that some who pushed removal were really motivated by “misery likes company” mindsets.

     
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    Old 11-03-2021, 11:57 AM   #13
    Prostatefree
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    Re: Exponentially rising PSA..

    Quote:
    Originally Posted by ASAdvocate View Post
    You constantly promote prostate removal, in every instance, with no mention of the often drastic reduction in quality of life from surgery.

    I have enjoyed twelve years of high quality life since diagnosis because I figured out that some who pushed removal were really motivated by “misery likes company” mindsets.
    Not at all. I think you are the exception, and a fine example of it. But I would not plan on it being realistic for most of us.

    I've fully recovered and am free of it. It's something I celebrate.

    Women have led the way on detection and treatment of a similar cancer, breast cancer. They will remove their entire healthy breasts to remove the risk before cancer is even detected. Is that misery looking for company or powerful people making bold choices to live.

     
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    Old 11-03-2021, 12:42 PM   #14
    IADT3since2000
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    Re: Exponentially rising PSA..

    Hi Prostatefree: you wrote the following in reply to ASAdvocate.

    Quote:
    Originally Posted by Prostatefree View Post
    Not at all. I think you are the exception, and a fine example of it. But I would not plan on it being realistic for most of us....
    On the contrary, for those of us who understand and respect scientific medical research that is sound and well done, the evidence supporting active surveillance for appropriate patients is overwhelmingly convincing. Multiple highly respected centers treating prostate cancer throughout the United States and throughout the world have reported remarkably consistent, favorable results for well-done active surveillance, with essentially no negative experiences. Moreover, the results now have matured to nearly three decades of follow-up involving thousands of patients - in other words, a very large and mature database. It's kind of an amazing record. In contrast to what you wrote, ASAdvocate's experience is rather typically realistic rather than being exceptional.

    Have you ever looked at that research? If you need help finding it, I and I'm sure ASAdvocate would be happy to help you focus on key studies.

    ….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, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 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. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my “hard knocks” experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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