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Thread: Its a mystery

  1. #1
    Experienced User
    Join Date
    Feb 2019
    Posts
    72

    Its a mystery

    Im back!

    Let me preface the continuation of my story by saying that everything is relative. What one man might find intolerable, another just shrugs off and smiles.

    On August 19th I arrived at MDA for a few visits and bloodwork. Back in July, my oncologist said he believed my PSA would not drop below 0.3. Well, guess what, it was 0.1!

    On August 20th my wife and I celebrated out 20th wedding anniversary.

    On August 21st I got up early and logged a few miles on the treadmill. At 4:45 AM we walked across the skybridge and checked in. We settled in and they set up my if needles. Although I had not had anything to drink since before midnight, I had to pee several times. My wife said the nurses behind the desk in the holding pen area were giving me dirty looks as I jogged by in my gown and socks. Hehe How many patients jog down the hall before surgery? The last thing I remember was being rolled down the hall.

    I woke up I was in a room with my wife sitting beside me. She said, Your surgeon came by. He took the left nerve trunk, but he doesnt think the cancer got out. He said you had a rare blood vessel on the left side they only find in 2% of the population. He thinks that will help with continence and ED. I know at this point some of you are raising eyebrows. Let me explain. I asked my surgeon several times about nerve sparing and he said he might take the left nerve trunk. This perplexed me because I thought most doctors got in there and poked around. If things were sticky they took the nerves. My surgeon never really clarified his logic prior to surgery.

    The surgeon had said he would call me if the path results arrived before I returned for a follow up. I never heard anything and started sniffing around online. On September 14th I found my path report. I don't fault him for not calling. He's a busy guy and I can read a path report.

    13 lymph nodes removed - All clear
    Bladder neck clear
    Seminal vesicles clear
    Chemotherapy effect present Gleason score unidentifiable
    Drum roll please
    All margins clear!

    I am so thankful.

    Now, lets talk about that left nerve trunk they removed. The path report said, specimen consisted of the prostate and surrounding adipose tissue. The amount was greater surrounding the left nerve trunk. NO cancer was present on the nerve trunk or surrounding tissue.

    I thought back to the youtube video I watched of a davinci surgery the night before my surgery. It looked like they were pulling spider webs from between layers of an onion. Then it hit me. The doctors at MDA all said they were going to be aggressive because I am so young. If the surgeon had gotten in there and the left nerve trunk was sticky, they would have contaminated the field. How would you successfully go about removing potentially cancerous tissue that was adjacent to the prostate? How would you know how much to remove and where once it was separated from the gland? The surgeon was looking out for me. Remember, I had a PSA of nearly 25 and 12 cores of cancer from 3+3=6 up to 4+3=7. These were not encouraging numbers. I looked at partins tables and nomograms. Not exactly relaxing bedtime reading in my case.

    If my surgeon had tried to spare the left nerve trunk and found cancer had grown out along the nerves to a small degree I probably would have been looking at more ADT, and I hate that f-ing stuff! By taking the nerve and some of the extra adipose tissue he hedged our bets. Some people might disagree with what he did, but Im pleased.

    Im 98% continent. I have a few drops in my shorts every now and then. I do lots of kegels. Im a believer.

    Ive been on 20mg of Viagra and using a pump. I refer to using the pump as using the Force on Darth Vader. The Viagra started giving me small erections on day one. As directed, I have taken up to 5 tablets prior to intercourse. My little soldier puffed up to full size but bent so much I could not penetrate. My wife had two c-sections so things are a bit snug down there. We have never complained and I wont start now. My wife and I laugh about trying to have sex with Gumby! We have settled for some nice foreplay to achieve orgasms until my little soldier stands at full attention. Shes the best wife a man could have! I am grateful that she is in my life. Dry orgasms are not bad. I do think they are more intense. As an added benefit, by wife likes the lack of a mess and said she would be up for sex in our Subaru Outback.

    Am I a little bummed about losing the left nerve trunk? Of course, but Im so damned happy to have a good path report that Im not going to let it steal my joy.

    I thought my pump looked so much like a space age gun that I took some glamour shots with it and my .9mm.

    I went to MDA for a follow up on October 14th. The surgeon said I am in the top percentile for urinary and erection recovery. I talked to him about my hypothesis regarding his removal of the left nerve trunk. He said that was exactly his thinking. He thought my 'gun' photos were hilarious. PSA is undetectable. He did not recommend further treatment at this time. We will of course monitor PSA regularly.


    I go back on November 21st to see the rehab specialist, Dr. Wang. Its pronounced Wong, but I still think thats funny as hell.



    I have found the following movie dialogue applicable to many situations over the years. Just substitute your particular situation in place of the word "theater".


    Philip Henslowe:
    Mr. Fennyman, allow me to explain about the theatre business. The natural condition is one of insurmountable obstacles on the road to imminent disaster.

    Hugh Fennyman:
    So what do we do?

    Philip Henslowe:
    Nothing. Strangely enough, it all turns out well.

    Hugh Fennyman:
    How?

    Philip Henslowe:
    I don't know. It's a mystery.

    ~ From the film, Shakespeare in Love



    Well, thats my story. I hope all of you have been well in my absence.

    Take care,

    Josey
    DOB 6/27/69
    12/21/18 1st PSA 25
    1/9/19 PSA 21.7, Free 1.86
    1/17/19 TRUS biopsy:
    PNI+ on left
    MD Anderson review of slides: 12/12 cores positive
    RB 55% 3+4=7
    RM 29% 3+3=6
    RA 12% 3+4=7
    LB 44% 4+3=7
    LM 84% 4+3=7
    LA 100% 3+4=7
    RBL 2% 3+4=7
    RML 24% 3+4=7
    RAL 26% 3+4=7
    LBL 87% 4+3=7
    LML 100% 4+3=7
    LAL 100% 4+3=7
    CT and bone scans negative
    MRI: NVI, SVI, rectum, bladder neck, sphincter, LNs: negative
    EPE negative, however, lesion in left peripheral gland abuts capsule along the left anterior,
    lateral and posterior lateral aspect of the gland.
    4/9/19 Began 6 months Lupron + Zytiga
    PSA 5/7/19 2.3
    PSA 5/24/19 1.3
    PSA 6/27/19 0.4
    PSA 7/15/19 0.3

  2. #2
    Welcome back jw! Glad that you have landed softly and arrived safely on "The Good Side of RP!"

    At 9 weeks post RP, it appears that you are doing tremendously well. Congrats!

    Re "Chemotherapy effect present Gleason score unidentifiable:" For the educational benefit of The Forum, does MDA consider Zytiga to be Chemotherapy?

    You will be 100% Recovered before Thanksgiving! Extra Thanks to be expressed on Nov 28!

    Keep the good news coming!

    MF
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Referred to URO MD
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = G7 (3+4) and 5 = Gleason 6
    Referred to URO Surgeon
    March '12: Robotic RP: Left: PM + EPE. MD waited in surgery for preliminary Path Report then excised substantial left adjacent tissue(s) down to negative margins and placed 2 Ti clips for SR guidance, if needed in future.
    Pathology: Gleason (3+4) pT3a pNO pMX pRO c tertiary pattern 5 / Prostate Size = 32 grams / Tumor = Bilateral: 20% / PNI: present
    3 month Post Op standard PSA = <0.1 ng/ml
    1st uPSA at 7 months Post Op = 0.018 ng/ml
    uPSA remains "stable" at 91 Months Post Op: Mean = 0.022 (22x uPSAs: Range 0.017 - 0.032) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  3. #3
    Congrats JW !! I'm glad things are going well. Just a couple of points about your post-op path report that you didn't mention:

    What was the final pathological staging, pT2?

    With your 12/12 positive biopsy cores, I'm interested to know if your report estimated the percent of the prostate affected by the PCa. Perhaps, like your final G score, they could not because of the effect of the HT (Zytiga).

    Thanks,

    Djin
    Last edited by DjinTonic; 10-30-2019 at 05:54 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(5L, 11R): 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 retest)
    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

  4. #4
    Experienced User
    Join Date
    Feb 2019
    Posts
    72
    Thank you for the warm welcome Brothers.

    I misspoke.

    MDA does not refer to ADT as chemotherapy.

    The local cancer center that oversaw my ADT does refer to any type of drugs used to treat cancer as chemotherapy.

    The exact wording on the path report says, "Gleason score cannot be assessed. Diffuse epithelial atrophy consistent with hormonal ablation therapy effect."

    Final staging is listed as : ypT2, N0.

    Regarding the total % cancer, I asked my surgeon. He said they never include that in the report.

    The prostate measured 4 cm * 3.6 cm * 2.7 cm, and weighed 13.8 grams, post fixation. Overall tumor size was not given, only the largest cross sectional length and width. The largest tumor, which was on the left side, was 1.6 cm * 1 cm. The tumor on the right side was listed as 0.6 cm * 0.2 cm. Even the surgeon questioned why they don't give more information, but said that this is what is normally reported. He did say that ADT makes it difficult to determine Geason score.

    Thanks,

    Josey
    DOB 6/27/69
    12/21/18 1st PSA 25
    1/9/19 PSA 21.7, Free 1.86
    1/17/19 TRUS biopsy:
    PNI+ on left
    MD Anderson review of slides: 12/12 cores positive
    RB 55% 3+4=7
    RM 29% 3+3=6
    RA 12% 3+4=7
    LB 44% 4+3=7
    LM 84% 4+3=7
    LA 100% 3+4=7
    RBL 2% 3+4=7
    RML 24% 3+4=7
    RAL 26% 3+4=7
    LBL 87% 4+3=7
    LML 100% 4+3=7
    LAL 100% 4+3=7
    CT and bone scans negative
    MRI: NVI, SVI, rectum, bladder neck, sphincter, LNs: negative
    EPE negative, however, lesion in left peripheral gland abuts capsule along the left anterior,
    lateral and posterior lateral aspect of the gland.
    4/9/19 Began 6 months Lupron + Zytiga
    PSA 5/7/19 2.3
    PSA 5/24/19 1.3
    PSA 6/27/19 0.4
    PSA 7/15/19 0.3

  5. #5
    Yes, ADT causes changes in the appearance of prostate cells that make G-score impossible. It's great that your PCa was totally prostate-confined, given that all 12 biopsy cores hit cancer.

    You should credit yourself and update your signature with your excellent RP path report findings and recent undetectable PSA readings!

    Djin

  6. #6
    Experienced User
    Join Date
    Feb 2019
    Posts
    56
    Happy for you Josey, I am headed to MD Anderson from Oklahoma on Monday, I have pre-op appointments on the 5th and surgery on the 11th starting to get nervous.

    If you don't mind who was your surgeon down there ?
    Age 55

    PSA 3.5 7-16
    PSA 4.18 7-17
    PSA 3.66 8-17
    PSA 4.99 7-18

    Biopsy 8-18
    Diagnosed 8-18

    12 Cores
    1 Core 5% positive
    Gleason 6

    PSA 5.3 11-18
    PSA 6.01 2-19
    PSA 6.73 6-11

    3T MRI 6-18-19
    MRI Fusion Biopsy 19 cores 7-18-19
    Left Mid Lat 3+4 3mm 25%
    Left Apex Lat 3+4 2mm 15%
    ROI RM TZA 3+4 17MM 27%

    RALP MD Anderson Dr Davis 11-11-19

  7. #7
    Experienced User
    Join Date
    Feb 2019
    Posts
    72
    Djust,

    My surgeon was Dr. Louis Pisters. I can't say enough good about him.

    Take care,

    Josey
    DOB 6/27/69
    12/21/18 1st PSA 25
    1/9/19 PSA 21.7, Free 1.86
    1/17/19 TRUS biopsy:
    PNI+ on left
    MD Anderson review of slides: 12/12 cores positive
    RB 55% 3+4=7
    RM 29% 3+3=6
    RA 12% 3+4=7
    LB 44% 4+3=7
    LM 84% 4+3=7
    LA 100% 3+4=7
    RBL 2% 3+4=7
    RML 24% 3+4=7
    RAL 26% 3+4=7
    LBL 87% 4+3=7
    LML 100% 4+3=7
    LAL 100% 4+3=7
    CT and bone scans negative
    MRI: NVI, SVI, rectum, bladder neck, sphincter, LNs: negative
    EPE negative, however, lesion in left peripheral gland abuts capsule along the left anterior,
    lateral and posterior lateral aspect of the gland.
    4/9/19 Began 6 months Lupron + Zytiga
    PSA 5/7/19 2.3
    PSA 5/24/19 1.3
    PSA 6/27/19 0.4
    PSA 7/15/19 0.3

 

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