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Thread: New DX. Doc recommends AS. Am I overreacting?

  1. #11
    Moderator Top User HighlanderCFH's Avatar
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    Welcome to the forum, JT,

    I join the others in feeling that you are NOT overreacting and would not be out of line to seek a second opinion. That is always a wise thing to do.

    I had a prostate that was almost 100 gms, with all the urination problems, when I was diagnosed with Gleason 6.

    I had surgery at Mayo Clinic in 2011 and have had a zero PSA ever since. And my urination problems are long gone also.

    Good luck!
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  2. #12
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    Your low risk is based solely on your biopsy. Biopsy technology, including fusion MRIs, are fallible and often not definitive. Was a full random array done with your targeted biopsy? The larger the prostate gets the more difficult the cancer is to detect with current technology. At 60 grams, a saturation biopsy of at least 20 samples or more begins to bring the chance of detection back into the range of the standard biopsy. MRIs are still as fallible as the standard biopsy, imo. Better, but no answer yet to the high rate of false negatives.

    Considering your very young age, size of prostate, and family cancer history I'd put your potential overall risk much higher. If your BMI is overweight or higher and ethnicity is adverse the risk grows. You want to connect all the dots to access overall risk. Knowing what I know now with my own experience I agree with your choice to treat. You may have the advantage of early detection. Surgery gets as close to proving it as we now know.
    Last edited by Another; 10-20-2019 at 05:45 PM.

  3. #13
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    Thank you, Chuck. Glad you are doing well post-surgery. I really appreciate you and all the other guys who take the time to encourage and offer insights. Best wishes to you!

  4. #14
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    Thank you, Another, for your reply and ideas. Your suggestions about the sampling of a larger prostate make perfect sense. My biopsy was 12 cores including those targeting the lesion. It seems sensible that if a 12-core sampling works for a 30-40 cc prostate, a higher number of samples may be in order for a 60 cc gland. This will certainly be on my list of questions for the doc at Vanderbilt. Thanks again, so much, for your ideas. Be well!

  5. #15
    Senior User
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    I think one of the most important, but often overlooked factor in choosing ones medical treatment for PCa or any medical condition is how one is "wired."

    Seems to me far to many will make a treatment choice without considering how they will live with their choice 1, 5 or 30 years down the line.

    In my opinion the best approach is to get as many second opinions as you want, do your research, evaluate your life situation, make a realistic evaluation how you are "wired" and decide what is best for you...
    PSA:

    January 03, 2005 2.70
    December 12, 2011 6.40
    November 09, 2012 7.60
    January 08, 2014 7.00
    January 14, 2015 8.10
    April 20, 2015 10.00
    July 06, 2015 9.10
    January 19, 2016 10.00
    July 15, 2016 8.68
    October 20, 2016 11.18
    February 10, 2017 10.00 (Finasteride lowered it to 5 so doubled it)
    April 6, 2017 3T MRI PI-RADS 4 - High
    September 15, 2017 9.58 (4.79 on Finasteride)
    March 19, 2018 8.06 (4.03 on Finasteride)
    Sept 27, 2018 9.54 (4.77 on Finasteride)
    Dec 6, 2018 12.22 (6.11 on Finasteride)
    April 26, 2019 12.52 (6.26 on Finasteride)
    July 26. 2019 11.14 (5.57 on Finasteride)

  6. #16
    Moderator Top User HighlanderCFH's Avatar
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    Quote Originally Posted by JTinGA View Post
    Thank you, Chuck. Glad you are doing well post-surgery. I really appreciate you and all the other guys who take the time to encourage and offer insights. Best wishes to you!

    Thank you for the kind words, my friend!
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  7. #17
    Top User
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    A large percentage of men are wired to deny and delay. Awareness and action can beat the disease.

    "Approximately 60% of cases are diagnosed in men over 65. ... Prostate cancer is the second leading cause of cancer death in men in the United States. It is estimated that 31,620 deaths from this disease will occur this year. However, the death rate has dropped by more than half from 1993 to 2016."

    Screening and treatment have made a difference. Recently, the numbers have started to reverse due to the "scare" of over treatment.

  8. #18
    Quote Originally Posted by Another View Post
    A large percentage of men are wired to deny and delay. Awareness and action can beat the disease.

    "Approximately 60% of cases are diagnosed in men over 65. ... Prostate cancer is the second leading cause of cancer death in men in the United States. It is estimated that 31,620 deaths from this disease will occur this year. However, the death rate has dropped by more than half from 1993 to 2016."

    Screening and treatment have made a difference. Recently, the numbers have started to reverse due to the "scare" of over treatment.
    My boss said exactly that re the scare of overtreatment.

    His doctor told him that doctors are moving away from DRE because so few nodules are found. The same doctor said that they are also stopping testing PSA due to scaring men. Soni asked my boss "so what are they going on symptoms?". Yep. That is scary.

    My boss had his PSA tested anyway and it was 0.5. You read that right 0.5. I was happy for him but also like DANG!

  9. #19
    Quote Originally Posted by IceStationZebra View Post
    ...
    His doctor told him that doctors are moving away from DRE because so few nodules are found. The same doctor said that they are also stopping testing PSA due to scaring men. Soni asked my boss "so what are they going on symptoms?". Yep. That is scary.
    ...
    All those whose docs found a nodule on DRE raise your hands.

    [I raise my hand.]

    A few visits ago I asked my uro/surgeon if he would have pushed for (yet another) biopsy on the basis of my PSA rise alone (3.6→4.3, in 6 months, on finasteride) if he hadn't felt the new nodule. He looked at my numbers, moved his head from side to side in a hmmm "mulling it over" gesture, and said "That's a good question -- we certainly would have discussed it."

    So I can't say for certain that a DRE led to my early diagnosis, but I'll take it as a Yes.

    The DRE serves other purposes as well -- your uro notes and tracks not only indurations and nodules, but the size, consistency, differences between sides, suspicious rectal findings (my Mom's rectal carcinoma was found on a routine DRE). So the question is Are men really scared of a DRE? Can docs not explain why it's being done? Once you have a DRE, is it still scary?

    After my TURP for BPH in 2013, my uro changed me from yearly to six-month visits/PSA; however, the DREs remained yearly until he felt an induration--then it was back to 6 months. He wasn't conerned about the induration, which disappeared and was on the opposite side where the nodule appeared).

    Perhaps the trend away from DREs applies to non-uros only; I find it hard to believe that uros are in on this.

    Djin
    Last edited by DjinTonic; 10-21-2019 at 05:38 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3-
    7-05-13 TURP for BPH (90→30 g) path neg., 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
    Bone scan, CTs, X-rays: neg.
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 pMX acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5x5x4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%, 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 wk) PSA <0.1
    LabCorp uPSA, Roche ECLIA:
    11-28-17 (3 m ) 0.010
    02-26-18 (6 m ) 0.009
    05-30-18 (9 m ) 0.007
    08-27-18 (1 yr.) 0.018 (?)
    09-26-18 (13 m) 0.013 (30-day check)
    11-26-18 (15 m) 0.012
    02-25-19 (18 m) 0.015
    05-22-19 (21 m) 0.015
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  10. #20
    Top User garyi's Avatar
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    Quote Originally Posted by DjinTonic View Post
    All those whose docs found a nodule on DRE raise your hands.

    [I raise my hand.]

    So the question is Are men really scared of a DRE?...

    Perhaps the trend away from DREs applies to non-uros only; I find it hard to believe that uros are in on this.
    I suspect most physicians shy away from DRE's also, and precious few know how to do, and interpret, them correctly.

    The first extensive DRE I received, a good seven years into my odyssey, was at Johns Hopkins....from a nurse practitioner! It was the first time a nodule was discovered and noted. I probably had ten or more DRE's over the previous seven years. Go figure....
    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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