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Thread: Anxiously waiting

  1. #31
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,154
    Quote Originally Posted by mostth View Post
    Chuck, that is what I did, only I was hoping for a better result. Hopefully someone will respond from up there to talk about what they would like for me to do next.

    Does this mean you are still waiting to hear from Mayo about the test result?
    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.

  2. #32
    Experienced User
    Join Date
    Feb 2019
    Posts
    76
    Quote Originally Posted by HighlanderCFH View Post
    Does this mean you are still waiting to hear from Mayo about the test result?
    Yes, they called yesterday and are sending a new test kit for a retest, should be here early next week, hoping for a fluke. I am being realistic and, yes want it confirmed but if comparable results, bone scan, MRI and PET scans upcoming.
    DOB 9/6/59
    1/21/19PSA 7.5.

    Bx 2/8/19
    Histologic grade: Grade group 3 (4+3=7)
    % of pattern 4: 60%
    Reffered to Mayo Clinic Rochester, MN
    Surgery 4/3/19 Igor Frank
    Adenocarcinoma ( 4 + 4 = 8, Grade group 4)identified
    forming a mass (3 x 1.5 x 1.2 cm) involving right
    superior-mid-inferior posterior & left-mid-posterior and
    right mid-anterior prostate. The tumor involves both
    right & left seminal vesicles. extraprostatic soft
    tissues -. surgical margins -.
    lymph nodes-
    Histologic Type: Acinar adenocarcinoma
    Histologic Grade
    Primary Gleason Pattern: 4
    Secondary Gleason Pattern: 4
    Tertiary Gleason Pattern: Not applicable
    Total Gleason Score: 8
    Grade Group: 4
    Extraprostatic Extension: Not identified
    Urinary Bladder Neck Invasion: Not identified
    SV Invasion: Present
    Margins: Uninvolved by invasive carcinoma
    Number of Lymph Nodes Involved: 0
    Number of Lymph Nodes Examined: 24
    Primary Tumor: pT3b
    Regional lymph nodes: pN0
    Distant Metastasis: Not applicable

  3. #33
    Experienced User
    Join Date
    Feb 2019
    Posts
    76
    Thanks for all the responses, getting the retest and then will assess the options, I guess according to the definition, I am not fully healed, I am about 98% continent but the little man has not shown any sign of life yet.
    DOB 9/6/59
    1/21/19PSA 7.5.

    Bx 2/8/19
    Histologic grade: Grade group 3 (4+3=7)
    % of pattern 4: 60%
    Reffered to Mayo Clinic Rochester, MN
    Surgery 4/3/19 Igor Frank
    Adenocarcinoma ( 4 + 4 = 8, Grade group 4)identified
    forming a mass (3 x 1.5 x 1.2 cm) involving right
    superior-mid-inferior posterior & left-mid-posterior and
    right mid-anterior prostate. The tumor involves both
    right & left seminal vesicles. extraprostatic soft
    tissues -. surgical margins -.
    lymph nodes-
    Histologic Type: Acinar adenocarcinoma
    Histologic Grade
    Primary Gleason Pattern: 4
    Secondary Gleason Pattern: 4
    Tertiary Gleason Pattern: Not applicable
    Total Gleason Score: 8
    Grade Group: 4
    Extraprostatic Extension: Not identified
    Urinary Bladder Neck Invasion: Not identified
    SV Invasion: Present
    Margins: Uninvolved by invasive carcinoma
    Number of Lymph Nodes Involved: 0
    Number of Lymph Nodes Examined: 24
    Primary Tumor: pT3b
    Regional lymph nodes: pN0
    Distant Metastasis: Not applicable

  4. #34
    Hi Mostth. 98% regained continence at 3 mo. post-op is very good indeed; I think you will 100% with a little time. Small stress leakage caused by posture, coughing, laughing, sneezing, etc.--- when we are momentarily taken by surprise and let down our "muscular guard"---Is usually the last to disappear. Keep up the kegels.

    Return of potency is another story and varies quite a lot case to case. Was your surgeon able to save both nerve bundles? (I ask because of the nearby bilateral SVI+). Erections are possible with just one bundle, however. Sometimes we need the help of ED medications---if your doc agrees, you can experiment. You can ask about all this at your next visit. Keep in mind that orgasm is possble without an erection, and erection return can take time.

    Here's hoping that the PSA retest tells a different story!

    Djin
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) path. neg. for cancer; then 6-mo. checkups
    6-06-17 DRE: nodule R and PSA rise, on finasteride: 3.6→4.3
    6-28-17 Biopsy #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 5% RLM
    Bone scan, CTs, X-rays: negative
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 bilat. acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5 x 5 x 4 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 weeks) PSA <0.1
    LabCorp uPSA (Roche ECLIA):
    11-28-17 (3 mo. ) 0.010
    02-26-18 (6 mo. ) 0.009
    05-30-18 (9 mo. ) 0.007
    08-27-18 (1 year) 0.018
    09-26-18 (13 mo) 0.013 (checking rise)
    11-26-18 (15 mo) 0.012
    02-25-19 (18 mo) 0.015
    05-22-19 (21 mo) 0.015

  5. #35
    Experienced User
    Join Date
    Feb 2019
    Posts
    76
    I guess you could say I am basically continent (not confident to go to work without a shield) but as soon as I get home I go the rest of the day until bedtime without protection. So far even with 100mg sildenafil no growth . One side the nerves were spared and the other partial sparing so still hopefull.
    DOB 9/6/59
    1/21/19PSA 7.5.

    Bx 2/8/19
    Histologic grade: Grade group 3 (4+3=7)
    % of pattern 4: 60%
    Reffered to Mayo Clinic Rochester, MN
    Surgery 4/3/19 Igor Frank
    Adenocarcinoma ( 4 + 4 = 8, Grade group 4)identified
    forming a mass (3 x 1.5 x 1.2 cm) involving right
    superior-mid-inferior posterior & left-mid-posterior and
    right mid-anterior prostate. The tumor involves both
    right & left seminal vesicles. extraprostatic soft
    tissues -. surgical margins -.
    lymph nodes-
    Histologic Type: Acinar adenocarcinoma
    Histologic Grade
    Primary Gleason Pattern: 4
    Secondary Gleason Pattern: 4
    Tertiary Gleason Pattern: Not applicable
    Total Gleason Score: 8
    Grade Group: 4
    Extraprostatic Extension: Not identified
    Urinary Bladder Neck Invasion: Not identified
    SV Invasion: Present
    Margins: Uninvolved by invasive carcinoma
    Number of Lymph Nodes Involved: 0
    Number of Lymph Nodes Examined: 24
    Primary Tumor: pT3b
    Regional lymph nodes: pN0
    Distant Metastasis: Not applicable

  6. #36
    Quote Originally Posted by mostth View Post
    I guess you could say I am basically continent (not confident to go to work without a shield) but as soon as I get home I go the rest of the day until bedtime without protection. So far even with 100mg sildenafil no growth . One side the nerves were spared and the other partial sparing so still hopefull.
    I too wore a thin shield to work for quite a while after it really wasn't needed. Although you couldn't see it, I did this for appearance

    I was taking 60 mg sildenafil because of BPH before surgery, and asked my uro/surgeon if I should start taking 20 mg daily right after RP catheter removal to aid blood flow and healing. He said there is no proof that this works, but, since it's so cheap now, there is no harm, and perhaps it could help. (Both nerves were spared; no BPH any more, obviously, but I use 100 mg now.)

    I took 20 mg daily until erections returned with a larger dose, which they soon did. Of course when you experiment on yourself like this, with no control group, and have a positive result, you have no way of knowing if the treatment worked or helped. I've not come across any journal studies about daily low doses of ED meds for healing/erection recovery.
    Last edited by DjinTonic; 07-13-2019 at 02:05 PM.

  7. #37
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,154
    Quote Originally Posted by mostth View Post
    Yes, they called yesterday and are sending a new test kit for a retest, should be here early next week, hoping for a fluke. I am being realistic and, yes want it confirmed but if comparable results, bone scan, MRI and PET scans upcoming.

    Good luck with the retest. Please let us know when you have the results.
    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.

 

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