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Thread: New member of the "club". Trying to learn and then decide

  1. #1
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    New member of the "club". Trying to learn and then decide

    I have been just diagnosed, I am 48, Biopsy in April, Gleason 3+3 in one core out of 13, (3%), PSA of 4.6 in March, raised from 4.2 in December. DRE normal. Father and 2 brothers (3 out of 4, the 4th one no data) had PCa. Father died of urothelial cancer.
    Now screening different options.
    Considering RP with Da Vinci and move on.
    Any thoughts?

  2. #2
    Quote Originally Posted by Transiter View Post
    I have been just diagnosed, I am 48, Biopsy in April, Gleason 3+3 in one core out of 13, (3%), PSA of 4.6 in March, raised from 4.2 in December. DRE normal. Father and 2 brothers (3 out of 4, the 4th one no data) had PCa. Father died of urothelial cancer.
    Now screening different options.
    Considering RP with Da Vinci and move on.
    Any thoughts?
    Hi Transiter and Welcome to the Forum!

    The 1/13 G6 core belies the quick PSA rise of the already high 4.2 to 4.6, so there may be more cancer around (or one large primary lesion).

    Regarding family history, there have been studies that say it doesn't matter for active surveillance candidacy:

    Prostate cancer family history and eligibility for active surveillance: a systematic review of the literature [2017]

    ...A family history of prostate cancer does not appear to increase a patient's risk of having more aggressive prostate cancer and is therefore unlikely to be an important factor in determining eligibility for AS. Further studies are needed to better understand the relationship between race, family history, and eligibility for AS.
    But

    The association of BRCA1 and BRCA2 mutations with prostate cancer risk, frequency, and mortality: A meta‐analysis [2019]

    Conclusions
    There is a 1.90‐fold greater risk of PCa in overall BRCA mutation carriers. This elevated PCa risk is attributable mainly to a 2.64‐fold greater risk of PCa in BRCA2 carriers compared to a moderate 1.35‐fold greater risk in BRCA1 carriers...
    BRCA2 and Other DDR Genes in Prostate Cancer [2019, Full Text]

    The poor outcomes associated with BRCA2-related prostate tumors have discouraged physicians to recommend active surveillance to eligible carriers although evidence to support this decision has only been provided recently. A report analyzing the outcomes of 1211 men undergoing active surveillance including 11 BRCA1, 11 BRCA2, and 5 ATM germline carriers showed that tumors in BRCA2 carriers were more likely to present a tumor grade reclassification requiring radical treatment when compared to non-carriers. The tumor staging upgrade incidence at 2-, 5- and 10- years was 27%, 50%, and 78% in BRCA2 carriers compared to 10%, 22% and 40% in non- carriers (p = 0.001) [25].
    With 75% (or perhaps 100% !) of your immediate male family (dad and 3 brothers) having had PCa, I think it would be reckless to ignore the writing on the wall, especially when it's written in big capital letters. (And I assume these were not all late-mature-onset cases.) I don't think that genetic (DNA) blood testing or genomic testing of your biopsy slides is necessary to know you should rule out AS; however, the genomics of you PCa could be helpful for your PSA testing frequency after treatment and in the case of a future PSA increase (BCR). If you elect RP, it's better to test the RP tissue than the biopsied tissue.

    Younger men generally have very good results from RP. I'm sure other Forum Brothers wil discuss the pros and cons of various radiation treatments vs. surgery. I would rule out any focal treatment. What advice have you gotten from your docs so far?

    Best of luck in your journey to your cure!

    Djin
    Last edited by DjinTonic; 05-15-2019 at 04:42 PM.
    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
    Top User
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    I have a grandfather(passed) and 3 brothers diagnosed. Two and myself so far have been treated with RP. My two treated brothers have adverse conditions after treatment; 3 +margins for the youngest and moving on to radiation after healing with a post surgery .03 PSA, and SMI for the other brother (oldest) waiting for PSA to breach 0.1.

    It is ancedotal, but all three of us have similar pathologies with G3+4. What varied is age, the amount and location. Mine may have been treated in time and confined within the prostate, but I had a large volume of it and am monitoring my PSA closely.

    Oldest, I don't know except for SMI and his older age indicates he was waiting, for what I don't know. I suspect the surgery went deep because his continence hasn't recovered. I believe his doctor was not assertive enough with him by not advising treatment sooner than later. Not uncommon. Seeing me take action spurred him to action.

    The youngest had a small volume, but with G3+4 at the surface of the apex and his first post PSA was detectable at 0.03 meaning a failed surgery with radiation and ADT to follow. He already has it mapped out, but is scheduling hip surgery before radiation. This gives him time to heal mostly for ED and he will confirm PSA rise before the hip surgery occurs incase it is an unexpected startling rise. His continence has returned in 3 months, so no longer an issue. You can see the advantage of ultrasensitive testing in intermediate risk cases giving you time to plan.

    I recommend you collect all the PSA history, bipopsy reports, and patholgy reports that are available from your brothers and your father's history. This will be useful info for you and your doctor. My brother who was diagnosed last has requested this from us for his doctor. In other words, create a signature for each of them so you can look at them in front of you side by side on paper and see what shows up. The value of a written medical history for PC (signature) is invaluable to you in keeping what you know front and center.
    Last edited by Another; 05-15-2019 at 10:21 PM.
    Born 1953
    family w/PCa; grandfather, 3 brothers
    07-12-04 PSA 1.90
    07-10-06 PSA 2.02
    08-30-07 PSA 3.20
    12-01-11 PSA 5.69 Internist recommends urologist, I say no
    05-16-12 PSA 4.76 manipulate w/diet & supplements
    12-11-12 PSA 5.20, Health system changes to 3 years on testing
    03-07-16 PSA 7.20 Internist adamant on urologist
    DRE smooth, enlarged
    03-14-16 TRUS biopsy-prostatic adenocarcinoma 1%-60% across 8 of 12 samples, Gleason 3+3=6
    03-31-16 MRI pelvis w/o dye
    05-04-16 DaVinci prostatectomy, nerve sparing, Dr. Kent Adkins - recommend
    Final Path; weight 65g, lymph nodes, seminal vesicles, capsule, margin all negative, Gleason 3+4=7, Tumor volume 35%, +pT2c
    Catheter out - 16 days
    Incontinence at 6mos is minimal – no pad
    Cialis 3x/wk & Viagra on occasion
    Begin self-injection needle therapy for erections, stop after 6 due to onset of Peyronie’s
    Erections 100% - 14 months
    5-21-19 PSA <0.02, Zero Club 3.5 years

  4. #4
    If you are trying to decide on a treatment, then I strongly recommend that you get a copy of Dr. Mark Scholz’ new book The Key to Prostate Cancer. He interviewed 30 prostate cancer experts and presents their descriptions of the treatments that they provide for men at various risk levels. You can get it in a day or two from Amazon, or immediate download.

    The explanations of the recurrence rates and side effects should be of particular interest to you.
    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.

  5. #5
    Senior User
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    Quote Originally Posted by Transiter View Post
    I have been just diagnosed, I am 48, Biopsy in April, Gleason 3+3 in one core out of 13, (3%), PSA of 4.6 in March, raised from 4.2 in December. DRE normal. Father and 2 brothers (3 out of 4, the 4th one no data) had PCa. Father died of urothelial cancer.
    Now screening different options.
    Considering RP with Da Vinci and move on.
    Any thoughts?
    At you age, low G score, and low PCa volume, I would want a really good surgeon with a pathologist in surgery and the goal of nerve sparing both sides if possible.
    Last edited by Duck2; 05-16-2019 at 02:20 PM.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT - 6/3/19
    ART - 8/5/19

  6. #6
    Moderator Top User HighlanderCFH's Avatar
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    Nov 2011
    Posts
    7,186
    Good luck to you, Trans, in whatever you decide.

    With your family history of PC, you are very wise to be staying right on top of your situation.

    With that said, I would think that Active Surveillance would be an option for you. Your family history is a concern, of course, but you should be able to stay right on top of any developments while on AS -- with regular PSA tests and annual or semi-annual biopsies.

    On the other hand, there could always be more in there than was detected by the prostate and -- once again with your family history -- it is probably not a bad idea to just knock it all out and be done with it. At your age, recovery from surgery should be relatively fast.

    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.
    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.

  7. #7
    Quote Originally Posted by Transiter View Post
    I have been just diagnosed, I am 48, Biopsy in April, Gleason 3+3 in one core out of 13, (3%), PSA of 4.6 in March, raised from 4.2 in December. DRE normal. Father and 2 brothers (3 out of 4, the 4th one no data) had PCa. Father died of urothelial cancer.
    Now screening different options.
    Considering RP with Da Vinci and move on.
    Any thoughts?
    Welcome to The Forum Transiter! You have just barely qualified for membership in "The PCa Club." Fortunately there are a lot of one-way exits out of this Club.

    A few questions and suggestions:

    - What is/are your URO MD/s advising at this point?

    - Are there any other possible causes for your elevated PSA such as BPH or prostatitis?

    - What imaging procedures are planned?

    - Have you discussed Active Surveillance (AS)?

    - Ask if you are a candidate for an MP 3T MRI. This can identify areas of suspicion that could have been missed on Biopsy. Especially if you elect AS, the MRI should be required.

    - If you decide to delay treatment, inquire about Genomic Testing on your (+) Biopsy (Bx) sample. The result may determine if delaying treatment (and if the MRI is clear) is prudent.

    - Both your family history and young age suggest that treatment in some form is on the horizon. Potentially, treatment may not be necessary for several years. Keep in mind that novel curative treatments could be available a few years ahead.

    - If having children is in the future, discuss this with your URO MD prior to any treatment.

    - Unless your URO MD suggests differently, you likely have plenty of time to do lots of research into the best available options to address your specific disease status and your personal psyche. IMO, AS should be at the top of the list for now.

    - ASAdvocate has suggested a good informational book. We also recommend getting the latest copy of the Patrick Walsh, MD, book: Guide to Surviving Prostate Cancer.

    Keep asking questions - exactly as you are doing. Schedule 2nd Opinion Consultations with expert MDs who specialize in treating PCa. If I were standing in your shoes, I would also look into the Focal/Ablative Therapies to determine if any are a good curative option. Even if not 100% curative, they could be a means of buying time.

    Relax and stay optimistic!

    MF
    Last edited by Michael F; 05-16-2019 at 04:36 PM.
    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 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  8. #8
    Re BRCA2: Here is a quick summary from a video posted on URO Today:


    "A man who is a BRCA2 carrier:

    - has a 30% likelihood of developing PCa in his life

    - more likely to have high grade disease

    - more likely to experience relapse following local therapy

    - have a higher risk of PCa related death

    - progress to mCRPC quicker
    "

    If interested, here is the link:

    https://www.urotoday.com/video-lectu...e-cancer-daily

    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 84 Months Post Op: Mean = 0.021 (20x uPSAs: Range 0.017 - 0.026) LabCorp: Ultrasensitive PSA: Roche ECLIA
    Continence = Very Good (≥ 99%)
    ED = present

  9. #9
    Senior User
    Join Date
    Jan 2019
    Posts
    479
    Quote Originally Posted by DjinTonic View Post
    Hi Transiter and Welcome to the Forum!

    The 1/13 G6 core belies the quick PSA rise of the already high 4.2 to 4.6, so there may be more cancer around (or one large primary lesion).
    If there is any one fact I wish I knew two years ago is that trying to interpret pretreatment PSA values in the the 3-6 range produces poor results,

    Some low volume cancers produce a lot of PSA and some high volume cancers produce little.

    Spoke to a neighbor this week with PCa. His biopsy was 16/16 cores, post operative pathology was near 100% involved, LNI, SVI, PSM, ECE, and the cancer had invaded his colon. His PSA was normal until 2018 when it went to 5.2.

    Mine 10% involved with some ECE, 5.11 and that value went up and down over 1.5 years and never returned to its highest value.

    Standard and Free PSA is not the best measurements, but it is all they got until the new ISO PSA is approved and in use.
    Last edited by Duck2; 05-16-2019 at 02:24 PM.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT - 6/3/19
    ART - 8/5/19

  10. #10
    Quote Originally Posted by Duck2 View Post
    If there is any one fact I wish I knew two years ago is that trying to interpret pretreatment PSA values in the the 3-6 range produces poor results,

    Some low volume cancers produce a lot of PSA and some high volume cancers produce little...
    Agreed, and PSA shouldn't be used alone as a crystal ball. My point was more of an aside to say that the picture painted by a single G6 core may be too rosy as to what's currently going on (let alone what the future holds).

    I think Transiter is a very poor candidate for AS. I wouldn't be surprised if he and his brothers were dealt bad genetic hands, perhaps from both parents, with regard to multiple genes, perhaps both somatic and germline. I think is very likely, that some of the PCa in his immediate family was/is metastatic. These are the patients (~3%) that slip through AS protocols and die of their PCa within 15 years. The 3% is average risk: for each genetic mutation you carry, you up your chances.

    Of course, if he is considering AS, genomic testing of the biopsied tissue (tumor RNA) and blood (my DNA) testing would, IMO, be imperative. Unless everything came back as low to average risk, I would not want years of anxiety on AS. Even with that, however, we don't know/test for all the mutations that can contribute to PCa. My docs would have to convince me that AS was as safe as any for guy with G6.

    Djin
    Last edited by DjinTonic; 05-16-2019 at 02:50 PM.
    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

 

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