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Thread: Were your PCa treatment results what you expected?

  1. #41
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    I guess I'm far enough along to finally answer this poll....

    1) So far, I would have to say better then expected. Because of the positive margins I am cautious to think I'm cured, and indeed if I need to have salvage radiation I might have to edit the "better then expected"!
    But so far, the surgery was a snap, 3+ months later I'm pretty much back to where I was being one of the top riders in my cycling group...may even switch back to the old saddle as I'm not noticing any effects of 30 mile rides.

    2) Incontinence was brief....once I got that darn catheter out!

    3) ED, not quite a good as it use to be, however I'm working on it! Fortunately - or unfortunately - depending on your prospective, wifey and I don't get it on much in recent years (Usually work too hard during the days to have anything left at night) so its been fine. However, if I was single I might consider using some medicinal assistance.
    Age:59
    Family history: Father Dx PC ~ age 60 brachytherapy; colon cancer surgery ~age 70 (deceased heart failure ~ age 80); Brother age 67, PSAs low (<2)
    June 2013 PSA: 4.20 DRE: Normal
    Nov 2015 PSA: 5.51 DRE: GP noted smooth, slight enlargement. Biopsy suggested.
    Mar 2016 Biopsy: 2/12 cores positive; G3+3
    Nov 2016 PSA: 8.76
    Dec 2016 Biopsy: 1/12 core positive right lateral apex; G5+3
    3/08/17 daVinci RALP; Pathology: 34 grams, tumor present 13/37 cassettes, Margins involved 4mm distance 6:00-9:00 apex margin; G4+3, stage pT2c; Extraprostatic extension, seminal vesicle, 11 lymph nodes (7R, 4L) all negative
    Cystograms 3/23 and 3/30 suggested small leak, speculated probably contrast agent in bulbourethral duct
    3/30/17 Catheter out (22 day!)
    4/29/17 Ran/walked half marathon in 2hr 39 mins!
    Jun/17: PSA 0.01

  2. #42
    Senior User GeorgeS's Avatar
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    Quote Originally Posted by MichiganMan16 View Post
    Rob: As you and I have discussed on a prior occasion, there is a difference between LVI, which we see on my pathology report, and positive /metastatic lymph nodes. George was or is stage 4 because of the "metastatic to lymph nodes". LVI, which is seen on the pathology report, is another adverse factor which is seen when the pathologist looks thru the microscope and is related to aggressive cancer behavior. ( Early BCR) He can see the cancer has gone into the channels of the lymph system. My RO told me that it's prognostic significance is uncertain and controversial as it pertains to the long term. This is my best recollection of that conversation. Much different than either positive LN dissected during RP, or found otherwise, as in George's case. MM
    MM,

    I'm not quite sure what "LVI" means so can't comment.

    I am aware that in some parts of the world (EU comes to mind) the standard practice used to be to abort a RP if the DR detected (and disected in OR) a positive lymph node. In most parts of the USA the standard is to remove the pelvic lymph notes (cancerous or not) during the RP.

    In both the USA and EU the standard used to be that "local therapy" was not offered if lymph involvement is suspected by imaging as the cancer had already spread. (imaging can only pickup 10x-100x larger than the human eye can during surgery)

    Those in the USA that were found to have positive lymph nodes at pathology don't have quite as good of prognosis as those with negative involvement and many go on to having salvage RT and ADT.

    Hence the "partlan tables" and MSK nanograhams and the like are used to predict cancer escaping the prostate and the likelyhood of PC progression after local therapy was tried.

    The overall prognosis of detecting the PC has spread via imaging prior to surgery vs during surgery is conterversal. However keep in mind that the partlan tables are based mostly on Dr Walshes efforts.

    IMHO: clearly a lot of useless cutting going on for sure.
    - George

    55yo at diagnosis 3/14, PSA=395, 1 week later PSA=322, 98cc prostate at biopsy: 16/16 positive, 15-G9 (4+5), 1-G6(unknown). Stage4: T3BN1M0, "Metastatic to Lymph nodes" (multiple nodes effected, bone scan clear, 12/14 DEX=normal, 12/16 DEX=normal)

    - Currently on ADT/TAB: Lupron 4mo+Cassodex
    - PSA 03/14=322
    - PSA 06/14=55.88
    - PSA 08/14=37.63
    - PSA 10/14=11.35
    - PSA 12/14=6.78
    - PSA 04/15=2.69
    - PSA 08/15=1.01
    - PSA 12/15=1.15
    - PSA 04/16=0.38
    - PSA 08/16=0.22
    - PSA 12/16=0.22
    - PSA 04/17=0.19

  3. #43
    George: LVI stands for Lymphovascular Invasion. As you can see on my signature, I had LVI, but my 15 lymph nodes taken were negative. Hence, pT3bNO..MO. Thank u for the reply, always enjoy reading your posts, and value your considerable opinion. Best to you George, MM
    DOB:Feb 1958
    PSA: 9/15: 5.9 PC/Father
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. 9 of 12 cores positive. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: Ct scan/bone scan- Both negative
    Clinical Staging: 10/28/15 T2c
    Surgery ( RALP) UC scheduled 12/29/15

    Final Pathology Report; Jan. 6 2016

    15 lymph nodes; no tumor present
    gleason upgraded to 9 ( 4+5)
    EPE; present
    Lymphovascular invasion present
    Right SV Positive
    Left SV and vasa deferentia, no tumor present
    PIN
    Perineural invasion present
    PM
    pT3bNO
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex: 4/1/16-8/5/16
    Lupron: 4/15/16 until 4/15/18
    SRT: 6/14/16...8/5/16 38 treatments completed
    8/10/16. uPSA <0.05
    11/18/16 uPSA <0.05
    2/8/17 uPSA <0.05
    5/15/17 uPSA <0.05

  4. #44
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    Quote Originally Posted by garyi View Post
    Could it be that the Forum is self selecting for those with the most serious issues???
    By its very nature, a 'help' page such as this will attract those with more serious, or at least complicated cases. The fellow with a suspect DRE who has a 3+3 biopsy and RRP that gets everything out will likely never have a need to look up a message board such as this one.

    As for the 'most' serious, there are at least two more boards that I frequent where there is a greater number of T3/4's, G9/G10's with bone mets etc than this one. More with unusual implants and more with unusual treatments. Several other FB's here also frequent several other boards.
    Me: Age 66, 62 when this started
    Oct 2012 : PSA=4, DRE negative
    Dec 2013 : PSA=9
    Mar 2014 : PSA 12, TRUS biopsy negative
    Mar 2015 : PSA 20, lots of Cipro
    Mar 2016 : PSA 25, GP DRE two bumps right side, dismissed by Uro, changed Uro
    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2 40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B

    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017 Salvage radiation delayed, Lupron ADT initiated, uPSA's ~.03
    Apr 2017 total urinary incontinence, AMS800 AUS implanted 5/15/2017
    Now celebrating my new F32 diagnosis!

    Mrs: Age 64, Dec 2016 Dx stage 4 DLBCL, Primary Lymphoma of Bone, spinal RT,
    6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone

    Cancer Couple Blog

    "Everyone you meet is fighting a battle you know nothing about... be kind"

  5. #45
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    Hi Guys,

    For some reason I have missed this very interesting thread but finally here are my experiences:
    1. Did they get the cancer? Well it looks like it, after 28 months the PSA is <0.05. I still am not sure though with positive margins and "Ductal components in the tumor" I am still on my toes.
    2. Incontinence? Today very seldom. Minor squirts primarily when drinking alcohol. I donīt think about it anymore.
    3. ED? Well it is not as before but it works and it works quite well with Viagra. It has shrunk, honestly, but it is not a problem. But sex is certainly not as it was before.

    I realize I am fortunate with the outcome so far and I do not regret my treatment choice.
    Born in 1962
    PSA 6.5, free PSA 10% Oct 2014
    10 biopsies taken Oct 2014
    6 biopsies G 3+3
    2 biopsies G 3+4
    T1c
    Total of 30 mm cancer of 130 mm biopsy samples
    da Vinci surgery jan 7th 2015, nerves spared on one side and "almost all" on other side
    Catheter out jan 23
    Feb 2nd, one shield/day almost continent
    March 17 2015 PSA<0.1
    Final stage pT2, no external invasion, no vesicles invasion, no lymph node invasion, small positive margin
    August 24 2015 PSA <0.1
    February 18 2016 PSA <0.1
    September 12 2016 PSA <0.05
    April 14 2017 PSE <0.05

  6. #46
    RobLee, I think that Gary has a point. I participate in four PCa forums, and the majority of questions are posted by either (1) guys with possible recurrence; or (2) newbies trying to deal with the diagnosis and learning to make choices.

    While there are invaluable contributors who are post-treatment, I would agree that most of those who had treatment and no recurrence tend to vanish and not join these forums. Not sure where I fit in , but if I might have some experience or knowledge, I'll try to add it to mix.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Five biopsies from 2009 to 2014. The third and fourth biopsies were positive with one core and three cores <5% and G 3+3. Fifth biopsy was negative.
    OncotypeDX: 86 percent chance of PCa remaining indolent
    August 2015: tests are stable; no MRI or biopsy this year for my AS program
    August 2016: MRI unchanged from 2/2014; PSA=3.9; FPSA=26; PHI=28. No biopsy necessary.

    A NOTE ON PSA: My readings have been erratic for over 10 years; typically being 3.5-4.2, but spiking to over 10 at times.
    These spikes are asymtomatic to me, and resolve themselves. A prostate biopsy can triple the PSA, which lasts for months.
    Last Free PSA was 26. I don't worry about PSA spikes anymore.

  7. #47
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    Thanks, Rob & ASA. Makes sense. The more I 'learn', the more confused I become.

    Age is seemingly a huge factor in the ongoing progression of PCa.

    https://pcnrv.blogspot.com/2016/08/a...treatment.html

    At least my physiological age is much lower than my chronological age, according to my wife and friends. At last immaturity pays off!
    70 years old
    LUTS symptoms for 5 years
    Treated with drugs
    Numerous DRE's
    PSA's over past 17 years - gradual increase from 1.0 to 3.0
    Current PSA 2.5
    TURP 2/16, 24 g removed, 35 g remaining
    G3+4 discovered
    3T MRI 5/16
    PI-RADS 5 Lesion in Right Apical Posterior
    MRI fusion guided biopsy 6/16
    14 cores; four G 3+3, one G3+4, Grade T1b
    Left Lateral Base G3+4, 10%
    Left Lateral Middle G3+3, 10%
    Right Lateral Apex G 3+3, 40%
    Right Apical Posterior PZ G3+3, 50%
    Right Apical Posterior PZ G3+3, 60%
    CIPRO antibiotic = C. Diff infection 7/16
    Cured with Vanco for 14 days
    Second 3T MRI 1/17
    Worsened bulging of posterior capsule and new
    effacement of adjacent neurovascular fat planes
    Worrisome for extracapsular extention PI-RADS-5
    Oncotype DX GPS 3/17, LFP risk 63%, Likelihood of Low
    Grade Disease 81%, Likelihood of Organ Confined 80%
    RALP scheduled for mid July at The U

  8. #48
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    Quote Originally Posted by ASAdvocate View Post
    Not sure where I fit in , but if I might have some experience or knowledge, I'll try to add it to mix.
    Your contributions are always welcome and much appreciated, if nothing more than being the "tenth voice" (which I heard somewhere in a movie)... if nine people say go one way, I want to listen to the tenth voice that disagrees. It was not "minority report" but is a similar concept.
    Me: Age 66, 62 when this started
    Oct 2012 : PSA=4, DRE negative
    Dec 2013 : PSA=9
    Mar 2014 : PSA 12, TRUS biopsy negative
    Mar 2015 : PSA 20, lots of Cipro
    Mar 2016 : PSA 25, GP DRE two bumps right side, dismissed by Uro, changed Uro
    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2 40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B

    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017 Salvage radiation delayed, Lupron ADT initiated, uPSA's ~.03
    Apr 2017 total urinary incontinence, AMS800 AUS implanted 5/15/2017
    Now celebrating my new F32 diagnosis!

    Mrs: Age 64, Dec 2016 Dx stage 4 DLBCL, Primary Lymphoma of Bone, spinal RT,
    6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone

    Cancer Couple Blog

    "Everyone you meet is fighting a battle you know nothing about... be kind"

  9. #49
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    Hi George! For those of us who opted for "Excision" there is a whole new list of terms and abbreviations that we become familiar with upon reading our Pathology Reports. Using various stains and histology techniques, the Pathologist examines the prostate gland from several different perspectives and records the observations, assessments and diagnoses in the Path Report.

    There is also a language called "Pathologese" in which pathologists at times speak in very vague terms which can be impossible to interpret but meets all of the standards of medical-legal indemnification from any future liability!!!

    Similar but more detailed than a Biopsy Report it will include:

    - Size of Prostate: Weight + dimensions

    - Tumor Quantitation: Location(s) and % of prostate gland occupied

    - Gleason Grade

    - Lymph Node Status

    - Seminal Vesicle Involvement(SVI)

    - Extraprostatic Extension(EPE):

    - Margins Status:

    - Lymphovascular Invasion (LVI): "LVI refers to the presence of cancer in local blood vessels or lymphatic vessels"

    - Perineural Invasion (PNI):

    Based on the total findings, one's risk for recurrence and subsequent need for either AR or SR can be evaluated. The greater the finding for each individual risk factor, the greater the risk for BR. (PNI alone is not highly significant) The more individual risk factors identified, the greater the risk for BR

    Put simply, the ideal Path Report would be: Gleason (3+3) / Tumor Quantitation = 10% with all other risk findings (-) (This might have been a good candidate for AS!)

    Hope this helps more than it confuses!!!

    MF
    Last edited by Michael F; 06-20-2017 at 10:56 AM.
    PSA: Oct '09 = 1.91, Oct '11 = 2.79, Dec '11 = 2.98 (PSA, Free = 0.39ng/ml, % PSA Free = 13%)
    Jan '12: DRE = Positive: "Left induration"
    Jan '12: Biopsy = 6 of 12 Cores were Positive: 1 = Gleason 7 (3+4) and 5 = Gleason 6
    March '12: Robotic RP: Left Positive Margins + EPEs. 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 / Prostate Size = 32 grams; Tumor = Bilateral; 20% / Perineural invasion: 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: = 0.020 ng/ml "Mean (+/-) STD" = 0.002 at 60 Months Post Op: (15 uPSAs: Range 0.017 - 0.024) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 98%)
    ED = present

  10. #50
    Senior User GeorgeS's Avatar
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    Quote Originally Posted by ASAdvocate View Post
    RobLee, I think that Gary has a point. I participate in four PCa forums, and the majority of questions are posted by either (1) guys with possible recurrence; or (2) newbies trying to deal with the diagnosis and learning to make choices.

    While there are invaluable contributors who are post-treatment, I would agree that most of those who had treatment and no recurrence tend to vanish and not join these forums. Not sure where I fit in , but if I might have some experience or knowledge, I'll try to add it to mix.
    I agree. This forum trends to have much more newbie and cured folk than more serious cases. One of the many reasons I don't drop by very often - I can't relate.

    There are a few Facebook groups that are dedicated to Advanced or Stage4 cases - surely not for the faint of heart as we loose someone every few months to PC. The Facebook groups cover the globe.

    I suppose that not everyone seeks out others with like diagnosis and treatments to compare notes with. Then again I've left more than one group where the 'armchair oncologists' insisted that I must be seeking advice - otherwise why on earth would I enroll in a 'support group' !?!??!

    Not sure where or if I fit in. I just drop by every so often to let fellow forum brothers know how I'm doing.
    - George

    55yo at diagnosis 3/14, PSA=395, 1 week later PSA=322, 98cc prostate at biopsy: 16/16 positive, 15-G9 (4+5), 1-G6(unknown). Stage4: T3BN1M0, "Metastatic to Lymph nodes" (multiple nodes effected, bone scan clear, 12/14 DEX=normal, 12/16 DEX=normal)

    - Currently on ADT/TAB: Lupron 4mo+Cassodex
    - PSA 03/14=322
    - PSA 06/14=55.88
    - PSA 08/14=37.63
    - PSA 10/14=11.35
    - PSA 12/14=6.78
    - PSA 04/15=2.69
    - PSA 08/15=1.01
    - PSA 12/15=1.15
    - PSA 04/16=0.38
    - PSA 08/16=0.22
    - PSA 12/16=0.22
    - PSA 04/17=0.19

 

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