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Thread: New DX. Doc recommends AS. Am I overreacting?

  1. #1
    Newbie New User
    Join Date
    Oct 2019

    New DX. Doc recommends AS. Am I overreacting?


    First of all, thank you to all who have shared their experiences and insights here. I’m 55 yo, and for the past 10 years my PSA has been “high for my age.” Generally, it has bounced around 2.5 to 3.5. In December, it jumped to 5.8, then in March it settled back down to 3.8. In July, PSA was 9.2, and the doctor recommend MP 3T MRI, which I had in August. Also, in August, the recheck of PSA was 4.85 with a PSA ratio of 19.8%. The MRI results showed a piRads 3 lesion. Had a fusion biopsy at Emory in September, and the results were:

    Prostate volume 60CC
    The piRads 3 lesion came back as high-grade PIN at left mid central zone.
    One core came back G6 1% in 1 of 2 cores at right base
    Two cores came back with ASAP at right apex
    One core came back G6 10% in 1 of 2 cores at left apex

    Naturally, with such minor malignancy detected, my doc recommends AS. Because of years of BPH, I’ve dealt with frequent urination, the dribbles, nocturia, and weak stream. The Doc is going to prescribe finasteride and sidenafil.

    I’ve scheduled an appointment for a 2nd opinion at Vanderbilt to see if there is any value in testing the malignant cells. I know that I’m very low risk clinically, but I lost my brother two year ago to renal cancer at age 55. While these cancers aren’t related, a large part of me just wants it out. The biopsy was awful for me, and I’m just not sure that I’m up for MRIs and biopsies each year.

    Am I over-reacting by seeking a second opinion given my very favorable biopsy report and prognosis? (Sorry for the long post.) Thanks for bearing with me!
    Last edited by JTinGA; 10-20-2019 at 01:31 AM.

  2. #2
    No, you are not over reacting.
    YOB 1957

    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.

    3/6/19. Pathology - Grade Group 4 with Intraductal Carcinoma
    T3aNO, 1 mm EPE, GS8, 21 mm uni-focal tumor involved 10% of prostate.

    7 Nodes, SV, SM, PNI, and BNI were negative.

    LVI and Cribriform pattern present.

    Decipher .86 High Risk.

    Post Surgery PSA
    3/25/19 .03. (28 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)
    9/10/2019. <.02. (198 days)

    3 Part Modality Treatment

    2/25/19 Robotic Laparoendoscopic Single Site Surgery outpatient Cleveland Clinic,

    ADT - started 6/19, end date 6/21.

    ART - Completed 9/26/19. (78 Gy, yes, I glow in the dark)

  3. #3
    Welcome glad to meet you but sorry you're here.

    You are definitely NOT overreacting by getting a second opinion but based on what I know, you probably don't have enough cancer in those cores to genetically test. I would definitely get the second opinion on AS.

    For my money--based on your age--you will not get out of this life alive with the prostate on board. You're growing cancer in there and also have bph (with symptoms), so like me there are multiple reasons indiciative of removing the prostate. What you have found is probably not all the cancer that's there.

    I too have BPH and when they did the cystoscopy I could see it poking up into the bladder considerably. However, besides getting up once a night I really don't have any symptoms from the bph so yours is worse.

    My journey was a lot like yours. PSA was 4.1 which started it all. First biopsy clean, doc thought I was cancer free because of the biopsy and "few men your age are diagnosed". Changed doctors and new doc ordered the 3T MRI. The MRI found a PIRADS 1-2 on the left and 3-4 on the right side. They did a fusion biopsy on the 3-4 and found nothing. However a tiny bit of G6 cancer was found in the right apex, which didn't light up on the MRI. I had another "random/mapped" biopsy six months later that found the much more significant amounts of G6 cancer (including the area where the PIRADS 3-4 lit up on the MRI) and some pre-cancer in the right base. I opted immediately for removal.

    Obviously the cancer that was found on my 3rd biopsy was there during the first and second but was just missed. I fully anticipate upgrade when the RP pathology is done and hope that we aren't surprised by something more significant or risky.

    I've always said that my real risk is letting it get out of hand and kill me and would say the same for you. Our stories aren't that far apart--age wise--and cancer doesn't go backwards, so it won't get better. There's a great chance there's more G6 there which you haven't found yet and possibly more cancer of a higher degree.

    The only thing you can really say with certainty is what you found. You cannot say what you DIDN'T find and with the disbursement of G6 and pre-cancer you have, my guess is that you have some more in there.....I would opt for treatment. Others with more knowledge can weigh in on AS protocols but you might not be eligible for a formal AS program by your load.

    PS if you're in GA (can't tell from your handle), I can IM you the name of my surgeon. The guy is supposedly the best in Atlanta and one of the best in the nation.
    Last edited by IceStationZebra; 10-19-2019 at 10:05 PM.
    2006: 1.6 PSA age 36
    2007: 1.3 PSA age 37
    2012: 2.2 PSA age 42
    2013: 2.6 PSA age 43
    2014: 2.8 PSA age 44
    2015: 3.1 PSA age 45
    2016: 3.5 PSA age 46
    2017: ? N/A
    3/18– 4.1 PSA at 48 YO. u/s measured 46 ml prostate
    3/18–free PSA 10%
    3/18–TRUS all 12 cores negative
    9/18– 4.5 PSA
    9/18– negative pca3
    12/18- 4K at 17%
    12/18- 3t MRI, 5mm pirads 3-4 and a pirads 1-2
    2/19- Fusion TRUS biopsy. G6 (3+3) 20% of a single core. Two cores pre-cancerous. AS for now
    4/19-PSA at 7.21 (biopsy effect)
    6/19-PSA back down to 4.8
    9/19-TRUS-- Right mid - prostatic adenocarcinoma G6 (3+3) grade group 1 involving 25% (4mm) of one core
    Right lateral - prostatic adenocarcinoma G6 (3+3) grade group 1 involving 90% (6mm) of one core
    Right lateral apex - prostatic adenocarcinoma G6 (3+3) grade group 1 involving 40% (8mm) of one core. Right base - Atypical small acinar proliferation.
    12/19- Planned Davinci RP

  4. #4
    Newbie New User
    Join Date
    Oct 2019
    Thank you, Duck2. Wishing you the best.

  5. #5
    Newbie New User
    Join Date
    Oct 2019
    Thank you IceStationZebra. The Doc at Emory told me that while my prognosis is great and that he recommends AS for now, I should understand that this will likely require treatment some day. I agree that there may not be enough tissue to conduct genomic/DNA tests. The biggest concern I have is that while I’m not exactly young, I’m hoping to get at least another 30 years on this side of Glory! The literature seems consistent - the earlier that treatment occurs, the greater the options and fewer complications and side effects. I’m wishing you the best with your upcoming surgery.

  6. #6
    After the first year In an AS program, you are not required to have annual MRIs and biopsies. That was in the past.

    All the medical associations that issue guidelines for the treatment of prostate cancer recommend active surveillance for low risk men.

    I have been on AS for ten years with no progression. Why risk the possibly life-changing side effects of treatment if you don’t need it?

    But, surveillance must be active, and that means following a regular testing protocol.

    I recommend that you buy 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 different risk levels.
    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 has varied up and down from 3 to 10 over the years. Is 4.0 as of September 2019.
    Hopefully, I can remain untreated. So far, so good.

  7. #7
    Newbie New User
    Join Date
    Oct 2019
    Thank you, ASAdvocate. I’m not eager to treat it at all. I guess the challenge for each of us is that we cannot look into a crystal ball. Thank you for the book recommendation. I’ve just started the Patrick Walsh book, but will look into the Sholz book. Best wishes to you!

  8. #8
    Welcome to the Forum, JTinGA! I'm not sure if you doc's "likely to require treatment" refers to just the PCa or the PCa+BPH. Ask your doc at Vanderbilt if it's not more accurate to say G6 men on AS may require treatment in their future. On the other hand surgery will take care of both of your conditions--no small thing if your BPH symptoms becomes serious and doesn't respond to medication (my BPH did, up to a point).

    While a Decipher test isn't the only genomics test (Oncotype DX is popular, and some institutions have their own tests), the concordance for Decipher serious-disease risk (High, Avg., or Low) between the test on biopsy tissue compared to definitive RP tissue is only 70%.

    Keep us posted,

    Last edited by DjinTonic; 10-19-2019 at 11:54 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(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
    08-28-19 (2 yr. ) 0.016
    Avg. = 0.013

  9. #9
    Quote Originally Posted by JTinGA View Post
    Am I over-reacting by seeking a second opinion given my very favorable biopsy report and prognosis? (Sorry for the long post.) Thanks for bearing with me!
    Not really. But I'm surprised you weren't able to get all your questions answered from the doctors at Emory, which is a top academic medical center too. I'd say sure, to get the 2nd opinion, but also to get your doctor from Emory on the phone about testing the cancer cells.

    You can be on AS for a long time without treatment or progression. Its been almost 6 years for me since I was diagnosed.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0

    DOB 1956, in Pittsburgh, USA

  10. #10
    Newbie New User
    Join Date
    Oct 2019
    Thank you for your reply, Southsider. It looks like AS is working very well for you! Thank you for the suggestion. The Uro I’ve seen at Emory is very young and very smart. I’m not sure how many cases of PCa someone that young could have experience with, and he’s giving me statistically correct information. When I asked him about testing the cells, he dismissed it given my “very low risk.” He’s done nothing wrong, and I’m not dissatisfied, per se, but our time together on this journey has likely ended as I really think it may be best to work with someone with more experience. My best wishes to you as you continue to do well with AS!


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