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Thread: Active Surveillance vs Radiation

  1. #11
    I am also a patient of Dr. Carter, and have been a member of his AS study group for ten years.

    While I am somewhat surprised that he offered AS to a man with some Gleason 4, I guess that your husband’s age (same as mine) is influencing a less strict attitude.

    In that case, I would recommend that he join the AS program at JH. The testing regimen would quickly alert him to the existence of a more serious cancer, without losing the window of time to treat.

    Any time spent safely living normally would be preferable to being treated and dealing with any level of side effects, in my humble opinion.

    Regarding radiation, my preference would be SBRT/Cyberknife, which has outcomes at least as good as the 40+ session IMRT, but with only five sessions.
    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.

  2. #12
    Quote Originally Posted by Littleman View Post
    Thanks so much for the quick replies! Based on what I have learned on this forum, we have asked about genetic testing and both JH and Cancer Institute of NJ indicated that they no longer so them because they find them to be unreliable. That was disappointing to learn.
    .
    WHAT does that statement mean? Are you saying that Johns Hopkins does not use genetic tests as indicators of cancer cells potential growth? Does that apply to just your husband's specific situation or to all men with prostate cancer?

    I was under the impression that genetic/genomic tests were making great strides in the ability to help men make informed decisions about SRT, ART, ADT.

    Can you provide any additional context for the JH statement about not using genetic tests.
    DOB: July 1947
    PSA: 2.0/2004 4.0/2010 5.8/2010 4.5/2012 5.6/2013 ALL Normal DRE
    5/18 PSA: 9.2
    6/18 PSA: 10.2 & 8.4% Free
    DRE small soft prostate w/no abnormalities
    6/28 3T mpMRI PIRADS 3
    18 cc gland=PSD 0.57 ng/cc
    0.32 cc lesion in apical PZ with subtle T2 signal hypointensity
    mild restricted diffusion of contrast into lesion prostate unremarkable intact capsule
    7/18 4KScore 34% Probability Gleason =>7

    8/03/18 Bx: Adenocarcinoma 6 of 13 cores ONLY L lobe
    T1c / Grade II / unfavorable intermediate
    extent of G3-G4 tissue far greater than indicated by MRI
    G6 (3+3) 70% LL Base 50% L Lateral Mid 20% L Base
    G7 (3 +4) 100% LL Apex 20% L Mid 60% L Apex
    8/15/18 Clear CT scan and Bone Scan
    RALP 8/23/18 pT3a, G7 (3+4), 20% involvement, SM+ (Focal 2mm G6), EPE(Focal G6)+, PNI+, LNI-, SVI-, LVI-
    7g Tumor 20x size in MRI & biopsy report & in BOTH lobes not just L as biopsy reported

    PSA Post Surgery
    10/3/18 0.021
    01/4/19 0.018
    04/03/19 0.022

  3. #13
    Quote Originally Posted by OldTiredSailor View Post
    WHAT does that statement mean? Are you saying that Johns Hopkins does not use genetic tests as indicators of cancer cells potential growth? Does that apply to just your husband's specific situation or to all men with prostate cancer?

    I was under the impression that genetic/genomic tests were making great strides in the ability to help men make informed decisions about SRT, ART, ADT.

    Can you provide any additional context for the JH statement about not using genetic tests.
    If true, this might apply to only to the testing of biopsied tissue and not RP tissue. Lesions are heterogeneous, and the former can test only the worst lesions that happened to be hit by in the biopsy cores, whereas the latter can likely test the worst in the whole prostate.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) then PSA 2x/yr, DRE yearly
    6-06-17 DRE: nodule R, 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 LVI SVI LN(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; Pomi-T (2/day)
    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

  4. #14
    Quote Originally Posted by Littleman View Post
    All four have stated that surgery in not an option. In Dr. Carter's words, it would be "overkill".

    Unfortunately, although all four gave us compelling reasons for each path, none can definitely suggest which would be best. As one doctor stated, there is no "free lunch" when making this decision. My husband is leaning towards radiation since he does not want to have to always think about this cancer. (He already struggles which the possibility of a leukemia relapse.) I lean more towards enrolling in the JH active surveillance program.
    74 is a marginal age as far as qualifying for radical prostatectomy, especially if you have serious co-morbidities like you report with his recent leukemia.

    Most guys, even those in great health, go for radiation at your husband's age. The "overkill" remark by Dr. Carter is sort of puzzling, as radiation is usually considered just as effective for PC as surgery for a cure. Maybe he was searching for a word to describe why he wasn't recommending surgery and that's what he said. There are good reasons why a lot of quality urologists wouldn't do this operation on your husband.
    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

  5. #15
    Southside, while Bal Carter is a surgeon, he is also the “founding father” of active surveillance in the United States. He started JH’s AS program in 1994, when other urologists thought it foolish.

    So, that background may explain his “overkill” remark about surgery in littleman’s case.
    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.

  6. #16
    Moderator Top User HighlanderCFH's Avatar
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    Maybe the doctor meant "overkill" to mean actually going under the knife and having the gland removed from his body, as opposed to just having it irradiated.

    Littleman, can you tell us your husband's PSA numbers? You may already have done this and I missed it. In any case, does the biopsy report break down the percentage of 3 pattern and pattern 4? If the pattern 4 is a very low percentage, he probably would do well with active surveillance.
    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. #17
    Experienced User
    Join Date
    Feb 2016
    Posts
    86
    I second the idea of investigating the option of HD Brachy. It is a very targeted therapy, and in my personal experience (and that of a few other forum brothers) has the benefit of very few side effects when compared to surgery or other forms of radiation-while still offering comparable or better cure rates. The few side effects that I experienced were VERY short term. You can search for my posts on this subject for a detailed account of the procedure. SubDenis also has a number for recent posts on his experience.

    Personally, I believe that more men should consider option this instead of surgery-and given that surgery isn't even an option for your husband, would strongly recommend researching how it differs from other forms of radiation therapy. Djintonc (?) has created a thread with research related to this treatment modality.

    Best of Luck!
    Last edited by Lumore51; 02-11-2019 at 04:39 PM.
    Enlarged prostate & protastitis since my 30's
    Completely asymptomatic in terms of sexual/urinary function
    PSA 2008 2.4
    PSA 2011 4.06
    PSA 2105 7.0 (free PSA 0.72)
    PCa Dx May 2015 from biopsy age of 64 (2/12 cores 10% involvement)
    Follow-up MRI guided biopsy in February 2016 DXd adenocarcinoma in
    9/20 cores ranging from 5%-70% involvement
    Gleason scores mixed 3+3=6. And 3+4=7
    2 rounds of High Dose Brachytherapy as Monotherapy at Stanford 4/20/16 & 5/5/16
    PSA August 2016: 2.45 (over 50% drop!)
    PSA November 2016: 1.54
    PSA March 2017: 1.46
    PSA June 2017: 1.45
    PSA November 2017: 1.24
    Told to expect PSA "bounces" typical of this therapy and not to worry unless they go up 3X in a row.
    No urinary, bowel or ED side effects noted. Take an occasional 1/2 Viagra or Cialis if I feel I might need it.

  8. #18
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    I agreed about HD Brachy. It is a very valid therapy portion and imo the best brachytherapy has to offer.

    I will disagree that RP be avoided as long as possible as inherently more risky for side effects than treatment. I wish I had chosen surgery sooner. So far at 2.5 years out, I consider my RP to have been successful. Having said that I also considered myself an ideal candidate for surgery aside from waiting too long.

    You can't force a treatment choice based on potential side effects. There is an primary treatment choice for each profile. The point, the is no optimal treatment choice above all others. Having the best understanding possible of your cancer, your physical condition, and life expectancy helps make the most effective treatment choice more obvious.

    AS is a treatment choice and with it comes an equally daunting set of side effects. It is not a get out of jail free card.
    Last edited by Another; 02-11-2019 at 01:27 PM.

  9. #19
    Regular User
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    Nov 2018
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    Thanks again for your many great responses.

    To answer a few of your questions, I asked at both JH and CINJ about genomic testing and both said that they no longer conduct it. Maybe I misspoke or didn't express myself correctly?

    As for my husband's PSA, it jumped from .77 to 7.1 within a two year period.

    His biopsy read "gleason score 3+4=7 grade group2 with 30% pattern 4, involving 10% of one core."

    Many thanks, once again.

  10. #20
    I will pass on refuting Another’s claim that AS “comes with equally daunting set of side effects”. Not worth my time.

    Regarding your pathology results, entering a strict AS program still makes sense. That gives you the experience to try to avoid radical treatment, and also allowing for quick transition to a chosen treatment should future tests show that to be necessary.
    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.

 

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