Disappointing News

Tech70
Tech70 Member Posts: 70 Member
in Prostate Cancer #1

Greetings.  I joined the Forum in November after being diagnosed with PCa.  At that time the diagnostic data were as follows:

One core positive, 10% of the core, Gleason 3+3

PSA 3.7

MRI negative

Oncotype DX PHI Score 19

Based on this data, the plan was to follow Active Surveillance.  As part of the AS protocol I had a confirmatory  biopsy done three weeks ago.  Prior to the biopsy, another PSA was 3.3.  Based on the stable PSA and favorable Oncotype results, I was expecting pretty much the same results as the first biopsy.  Instead I received the following news:

Two cores positive, one 3% and one 7% of the core.   Gleason score for both cores was 3+4

At this point, the plan is to send the samples to Dr. Jonathon Epstein at Johns Hopkins for a second opinion on the scoring.  Also, the second set of samples will be submitted for Oncotype DX testing.  My urologist and I will then meet in three weeks to review the new informaton provided by these actions.

Right now, my inclination is to continue with AS monitoring PSA frequently.  However, most guidelines do not recommend AS with a 3+4 Gleason.  Is anyone else on the Forum on AS with Gleason 3+4?

This forum is a great source of information; thanks to all for your participation

 

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #2
    .

    I am starting my tenth year of Active Surveillance.

    A couple of years ago, a Gleason 3+4=7 was found.

    My biopsies are MRI Guided, using a three dimensional biopsy machine. There are a few different manufacturers of this machine. The Artemis machine was used in my case.

    Since my biopsy was MRI guided, the doctor has the ability to go back to the exact spot where the 3+4 was located, and biopsy the surrounding area to determine how extensive the 3+4 is.

    the doctor did re-biopsy after one year, and did not find any more 3+4 in that area, in fact no 3+4.

    The 3+4 that they found  was measured , and the amount of 4 in the core, showed as 5%. 

    My doctor will continue with Active Surveillance

    I listened to a lecture by Lawrence Klotz from Canada, a world know expert for Active Surveillance, who leads a team that monitors a long term active surveillance program that is a benchmark for others, and he keeps his patients with less than 10% of Gleason 4 cancer in his Active Surveillance program.

    This is the lecture, he talks about the 3+4 toward the end of the presentation

    https://www.urotoday.com/video-lectures/keane-s-corner/video/mediaitem/778-embedded-media2017-06-02-13-54-01.html?utm_source=newsletter_5079&utm_medium=email&utm_campaign=optimizing-active-surveillance-for-prostate-cancer-highest-viewer-rated-content-in-2017

    Click my name to the left to look at my about me page, which lists all test results and cancer progress for your review.

    Feel free to ask questions

  • mcin777
    mcin777 Member Posts: 66
    #3
    Be encouraged Tech

    Hi Tech

    When I had an early biopsy, it came back as 3+4.  I sent it to John Hopkins and it came back as 3+3.  I recently had another biopsy that I also sent to John Hopkins.  Still 3+3.

  • Tech70
    Tech70 Member Posts: 70 Member
    edited March 2018 #4
    mcin777 said:

    Be encouraged Tech

    Hi Tech

    When I had an early biopsy, it came back as 3+4.  I sent it to John Hopkins and it came back as 3+3.  I recently had another biopsy that I also sent to John Hopkins.  Still 3+3.

    That would be fantastic news

    That would be fantastic news and I'm hoping for the same results when JH reviews my slides.  I was somewhat concerned when I noticed on my Medicare report that a different pathology lab was used on the second biopsy.  And the charges from the second lab were only about a third of the first lab.  As a business man, logic says that if a lab charges significantly less, they are asking their pathologists to do more evaluations in the same amount of time.  I would hope that is not the case, but I'm skeptical.

    I did have an experience over 25 years ago where I had a benign tumor removed from one of my salivary glands.  The surgeon told he that the first pathologist indicated some suspicioius pathology, but the surgeon then made an uncomplimentary remark about the guy, said he sent it to another pathologist, and that I had no indication of mallignancy.

    Also, as noted above, I'm having Oncothype DX testing done on the second samples.  The testing on the first set was quite encouraging and helped support my decision to go with AS.

    All this having been said, I was really shaken by yesterday's news.  I went in expecting to have the initial diagnosis confirmed and was unprepared for the news I actually got. I did manage to have a reasonably rational conversation with my doctor even though I was kind of in a mental fog.  Let's just say I'm pretty sleep deprived this morning.

Discussion Boards