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Thread: Warts and all account of the journey before, during and after surgery

  1. #1
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    Warts and all account of the journey before, during and after surgery

    All,

    I've put together a pretty detailed account of my experiences discovering and dealing with prostate cancer. It's a bit sweary but it's all there. I hope this is in some way helpful for those on a similar path.

    All the best

    Jaf

    https://write.as/jaffa/

  2. #2
    Hi Jaf and Welcome to the Forum! I can assure you that we're a very different kind of audience for your written piece , many of us having gone through very similar scenes.

    Since this is a prostate-cancer (PCa) forum, a couple of cancer-related questions for you:

    How old were you at your diagnosis? Is the a family history of prostate cancer (dad or brother)?

    Was that PSA of 7 your first test, or did you have a history of a rising PSA? To be very honest with you, when I saw that 7, I had a not-good feeling that your prostate story would end with you winding up as a G9 (4+5). I'm sorry that my guess was correct.

    Have you become familiar with the pathology report done on your removed prostate (the "biopsy" as you called it)? In addition to monitoring your PSA (as all of us post-treatment guys do), that report may contain other important findings that put you at higher risk than other men going forward. (I assume that even if you donated your prostate to science, some blocks of tissue were kept by the institute that did you surgery -- tissue from one's cancer might prove to be precious in the future for several reasons.)

    An important assessment after a RP is your "pathological staging", which is usually a pT2 (the cancer was judged to have been prostate confined) or a pT3 (the cancer was not prostate-confined), the latter usually followed by a letter, a, b, or c to indication where else cancer cells were found. You should also see an indication of either pN0 (none of the lymph nodes removed with the prostate were cancerous) or pN1 (one or more of these nodes were positive for cancer). Since you were a Gleason 9, these are very important questions.

    Did you doc say that any findings in the report indicate that you should have further (adjuvant) treatment regardless of your good initial post-op PSA values.

    Where are you located, if I may ask?

    Welcome aboard!

    Djin
    Last edited by DjinTonic; 08-13-2019 at 02:22 AM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. Bx, PCA3 -
    2013 TURP (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

  3. #3
    Thank you for the very well-written blog.

    I hope that many men who are contemplating surgery will read it. Good work!
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Strict protocol of tests, including PHI, DRE, MRI, and biopsy.
    Six biopsies from 2009 to 2019. Numbers 1, 2, and 5 were negative. Numbers 3,4, and 6 were positive with 5% Gleason(3+3) found. Last one was Precision Point transperineal.
    PSA 4.4, fPSA 24, PHI 32
    Hopefully, I can remain untreated. So far, so good.

  4. #4
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    Thanks for the welcome!

    Answers in line below.

    ** How old were you at your diagnosis?

    52

    ** Was that PSA of 7 your first test, or did you have a history of a rising PSA? To be very honest with you, when I saw that 7, I had a not-good feeling that your prostate story would end with you winding up as a G9 (4+5). I'm sorry that my guess was correct.
    N
    o. It was 5 initially, rising to 7 and then 9 in pretty short order. It seemed to be accelerating upwards.

    **Have you become familiar with the pathology report done on your removed prostate (the "biopsy" as you called it)? In addition to monitoring your PSA (as all of us post-treatment guys do), that report may contain other important findings that put you at higher risk than other men going forward. (I assume that even if you donated your prostate to science, some blocks of tissue were kept by the institute that did you surgery -- tissue from you cancer might prove to be precious in the future.)

    The surgeon has the report on file. I have not requested it. I went for a consultation after the post-op PSA test and the news was that all of the cancer was contained within the prostate with the exception of a 0.4mm area outside which was removed in surgery. How the hell he found that I have no idea, but the removal was documented in the report.

    **An important assessment after a RP is your "pathological staging", which is usually a pT2 (the cancer was judged to have been prostate confined) or a pT3 (the cancer was not prostate-confined), the latter usually followed by a letter, a, b, or c to indication where else cancer cells were found. You should also see an indication of either pN0 (none of the lymph nodes removed with the prostate were cancerous) or pN1 (one or more of these nodes were positive for cancer). Since you were a Gleason 9, these are very important questions.

    I don't have that data, but I will track it down. And report back. Thanks for raising it. I've gone through process this quite detached. I find it help to know as little as possible, if that makes sense?

    **Did you doc say that any findings in the report indicate that you should have further (adjuvant) treatment regardless of your good initial post-op PSA values.

    The surgeon said - no further treatment required. I had kind of assumed that, but radiotherapy was still on the cards. I guess you learn about this stuff as you go. I'm still learning now as I'm reading your reply! We're going to do blood tests every 3 months to see if the PSA moves.

    **Where are you located, if I may ask?
    I'm based in Australia

    All the best
    Jaf

  5. #5
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    Thanks mate. It's worked out for me so far. I hope that it is in someway helpful to others. All the best. Jaf.

  6. #6
    Thanks, Jaf. At first blush you are quite lucky! You were pT2, prostate-confined, with a negligible positive surgical margin (even 1.0 mm is considered very small, and sometimes very small margins are atifacts and do not mean cancer cells were left behind). I would hope men are imaged and biopsied well below a PSA of 7 in most cases. (I was a lucky pT2 Gleason 9 also, but was being followed very closely with regular biopsies because of my benign prostate enlargement.) Logically you don't want high-grade (G8-10) PCa sitting around for years, causing further trouble, before treatment.

    Yes, I think it's a very good idea to have a written copy of your surgical path report for your records. A 3-month PSA test schedule is typical for us high-risk guys. Keep us posted.

    Djin
    Last edited by DjinTonic; 08-13-2019 at 03:06 AM.

  7. #7
    Moderator Top User HighlanderCFH's Avatar
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    THANK YOU, Jaffa. And welcome to the forum!
    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.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  8. #8
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    Great blog Jaffa, thank you for sharing it. I sounds like things went relatively well for something that could have been much worse. I hope your recovery continues to improve!

    I have a couple questions for the other guys on here:

    1) Is the pain block a routine thing? This is the first I've heard of it and I thought that the nurses wanted you up and walking around as soon as possible after surgery.

    2) Can we start a movement in the U.S. to start calling our shopping carts trolleys? It just sounds cooler.
    DOB 4/11/1969
    PSA: 5/12: 3.46, 3/13: 2.38, 3/14: 3.49 6/15: 3.10 7/16: 3.19 12/17: 3.5 04/18: 3.8 12/18 4.1 4/19 4.5 6/19 4.8
    Nodule found during DRE 7/2016
    Biopsy: 7/22/2016
    RMB: adenocarcinoma, Gleason score 3+3=6
    Total surface area 5% involved
    perineural invasion present
    Biopsy: 7/19/2017
    Gleason score 3+3=6
    Total surface area 30% involved

  9. #9
    Quote Originally Posted by wbigs View Post
    Great blog Jaffa, thank you for sharing it. I sounds like things went relatively well for something that could have been much worse. I hope your recovery continues to improve!

    I have a couple questions for the other guys on here:

    1) Is the pain block a routine thing? This is the first I've heard of it and I thought that the nurses wanted you up and walking around as soon as possible after surgery.

    ....
    For my open RP I had an EXPAREL injection. It's a non-opioid pain block that lasts several days. I wouldn't think it's used or necessary for RALP, but I could be wrong.

    Djin

  10. #10
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    Join Date
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    Quote Originally Posted by jaffa2000 View Post
    All,

    I've put together a pretty detailed account of my experiences discovering and dealing with prostate cancer. It's a bit sweary but it's all there. I hope this is in some way helpful for those on a similar path.

    All the best

    Jaf

    https://write.as/jaffa/
    Thanks for documenting your journey. It was very informative and enjoyable.
    Age 49
    Fort Lauderdale, FL
    9/17/14 PSA 3.2
    10/1/14 PSA 2.0
    7/16/15 PSA 2.8
    1/13/16 PSA 2.8
    4/27/16 PSA 2.7
    ?/?/17 PSA 3.9
    6/19/18 PSA 5.7
    7/3/19 PSA 5.4
    7/24/18 Prostate Biopsy results
    C)Left Apex Suspicious
    K)R Lat Mid Malignancy, Gleason 3+3=6, 5% involved 1.5 tumor length
    L) R Lat Apex Malignancy, Gleason 3+3=6, 1% involved .3 tumor length
    Prostate size 54cc
    7/19/19 Prostate Biopsy results
    B. L MIDDLE, Gleason 3+3=6, 30% involved 3 mm in length
    C. L Apex, Gleason 3+3=6, 5% involved
    E. L Lat Middle, Gleason 3+3=6, 20% involved 2mm in length
    G. R Base, Gleason 4+5=9, 60% involved 7mm in length
    I. R Apex, Gleason 3+3=6, 5% involved 1mm in length
    J. R Lateral Base, Gleason 4+5=9, 20% involved 2mm in length
    8/6/19 Bone Scan and CT Scan - Negative for any ureteral or bladder calculus, lymph node and seminal vesicles appear normal, moderate prostate enlargement

 

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