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Thread: What I Need to Know About Active Surveillance

  1. #1
    Moderator Top User HighlanderCFH's Avatar
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    What I Need to Know About Active Surveillance

    Ddayglo had a great idea and suggested that I add this to the stickies.

    Since we're currently listing important things to know before various treatment options, it makes good sense to also have one for those considering active surveillance.

    So, here's your chance to list such things for those of us who are starting down this path and wonder what they should inquire about before making their decision.

    Thanks!
    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.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  2. #2
    While I did not chose AS due to my risk score, if I was a Gleason 6, knowing what I do now, before proceeding down that road, I would have:
    a)Had my slides looked at my someone else to confirm it was a "true" 6 and nothing borderline;
    b)Discuss with my urologist going beyond the standard "12 core" biopsy and doing a "saturation biopsy" for additional assurance that there are no Gleason 7's hiding in there....
    c)Add PCA-III test as an additional "marker"
    BD: 1959 PSA 4.9 11/2012 (no symptoms)
    Biopsy 12/2012 Negative
    PSA 5.9 05/2013 (still no symptoms)
    Biopsy 6/2013 3+4 (thank goodness for PSA tests)
    1 core positive (upper left), 1 suspicious (lower left) out of 12
    DRE: bump right side T1c; PCA-III = 20 (normal)

    Da Vinci 7/18/2013: Invasive carcinoma involves left lobe of prostate only, extends from left apex to posterior mid region of left lobe Gleason 7/10 (4+3); G4 tumor comprises 75% of invasive carcinoma present
    Estimated total volume of carcinoma in entire prostate gland: 10%
    TNM: T2b NX MX (Stage IIA)

    8/13 11/13 2/14 8/14 2/15 8/15 3/16, 8/16, 3/17,9/17,4/18, 9/18 PSA undetectable
    3/19: .1 (damn), 4/19,6/29 retests: .1 (damn)


    My Story:
    T-Minus-36-Hours-until-da-Vinci...
    Catheter is Out!

  3. #3
    Newbie Regular User
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    I am 58 and pretty concerned about post-treatment quality of life, so I've decided to pursue Active Surveillance until circumstances dictate otherwise. My doctor relented even though he points out that 5 of my 12 cores were positive, and one was 50%, both of which are outside of the recommended Johns Hopkins guidelines. I got my biopsy results in May 2013. I had a Gleason Score of 3+3=6, and PSA of 4.5. It was re-tested last week and was 3.9. I even had a Prolaris test, which looks for genetic markers of more aggressive cancers, none of which it determined that I had (I am not sure I'd bet the ranch on this test, but it does support my AS strategy, regardless of its reliability.) I was comfortable with the decision -- the odds are very high that something other than prostate cancer will kill me, and I'll take those odds if I can avoid those possible nasty side effects.

    Here's the monkey wrench. Last week, I got the results of a second opinion on my biopsy from University of Pennsylvania Hospital. They said they detected 3+4=7 in one of my five positive cores. They suggested I get Dr. Epstein's opinion at Johns Hopkins as the tie-breaking interpretation, and I may do that, but regardless of his interpretation, I'll always know at least one pathologist thinks my prostate cancer is a little more serious than the initial biopsy reading.

    So I'm just not sure if Active Surveillance is still the way to go.

    Appreciate any suggestions or insights. Thanks

  4. #4
    Those who contemplate AS should read the book by Dr. Mark Scholz and Ralph Blum: Invasion of the Prostate Snatchers. It is one of my favorite books on prostate cancer. Ralph Blum, the patient was a very successful AS patient for a long time. Dr. Scholz is one of the top prostate cancer oncologists in the US.
    PCa Dx 2010 at 65. PSA increased from 2.5 in 2000 to 10.7 in 2010. Four biopsies in 6 years. Final biopsy in 2010: 1 of 12 cores 5% cancer, G6
    CT, bone scans & MRI all negative
    Da Vinci 8/10; nerve sparing, catheter out in 7 days; no incontinence, no ED
    Post Op Pathology pT2N0Mx: organ confined; negative margins; lymph nodes & seminal vesicle not involved but PNI present; cancer extensive within prostate, multifocal G 3+3 and tertiary G 4
    Infected lymphocele diagnosed and treated in 2014, 4 yrs after RALP
    PSA <.1 for the past 6 years.

  5. #5
    Moderator Top User HighlanderCFH's Avatar
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    Quote Originally Posted by JustSlappy View Post
    I am 58 and pretty concerned about post-treatment quality of life, so I've decided to pursue Active Surveillance until circumstances dictate otherwise. My doctor relented even though he points out that 5 of my 12 cores were positive, and one was 50%, both of which are outside of the recommended Johns Hopkins guidelines. I got my biopsy results in May 2013. I had a Gleason Score of 3+3=6, and PSA of 4.5. It was re-tested last week and was 3.9. I even had a Prolaris test, which looks for genetic markers of more aggressive cancers, none of which it determined that I had (I am not sure I'd bet the ranch on this test, but it does support my AS strategy, regardless of its reliability.) I was comfortable with the decision -- the odds are very high that something other than prostate cancer will kill me, and I'll take those odds if I can avoid those possible nasty side effects.

    Here's the monkey wrench. Last week, I got the results of a second opinion on my biopsy from University of Pennsylvania Hospital. They said they detected 3+4=7 in one of my five positive cores. They suggested I get Dr. Epstein's opinion at Johns Hopkins as the tie-breaking interpretation, and I may do that, but regardless of his interpretation, I'll always know at least one pathologist thinks my prostate cancer is a little more serious than the initial biopsy reading.

    So I'm just not sure if Active Surveillance is still the way to go.

    Appreciate any suggestions or insights. Thanks
    Hi there,

    Another thing to be aware of is that -- between 20 and 28% of the time -- the Gleason score given by the biopsy turns out to be HIGHER than originally reported. Now, this does NOT mean that they may have confused a higher Gleason score with a Gleason 6. It simply reflects the fact that a biopsy (standard 12 core) only samples a tiny portion of the entire prostate and, therefore, it is very easy for it to miss other tumors that might be present -- and of a higher Gleason score.

    Lots of things to consider when thinking about AS. I wish they had a test that could show, without a doubt, which Gleason 6 is truly a case involving only 3+3. In those cases, AS could safely be followed without risking that a higher grade tumor could be lurking within.

    Take care,
    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.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  6. #6
    Newbie Regular User
    Join Date
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    Posts
    17
    It was quite a surprise to me how unable urologists are to predict the likelihood that prostate cancer will spread beyond the prostate. A biopsy can suggest that a cancer is widespread and aggressive, but isn't nearly as effective at telling you if you are among the vast majority of people with prostate cancer who have a slow-growing cancer that you can outlive.

    Thanks, all, for your insights. That second, revised opinion was a real kick in the gut. After weeks of consultations, tests and soul-searching, I'd finally gotten comfortable with Active Surveillance, but now I feel like I'm starting the process all over again. If my real Gleason score is 3+4, I guess I should be thankful someone spotted it.

  7. #7
    Moderator Top User HighlanderCFH's Avatar
    Join Date
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    Yes, if there truly is a Gleason grade 4 in there, my thoughts are that AS would no longer be a viable option.

    The "clues" to the possible spreading of PC lie in the PSA number and, of course, the staging & Gleason scores. For example, a PSA of under 10 is not usually associated with metastasis. And a true Gleason 6 (with no higher grades involved) is virtually never associated with metastasis.

    This allows us to have "educated guesses," but that's about it.
    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.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  8. #8
    Senior User
    Join Date
    Aug 2013
    Posts
    100
    I found a survey that looked at long term follow-ups of over 700 RP patients to try to determine the optimal time patients undergoing the procedure should be monitored. The results make me wonder about the validity of AS once cancer has been discovered. In the study the results after 18.6 years of watching PSA values of individuals who had undergone RP, found that those with Gleason 6 scores had 4% incidence of recurring PSA while those with Gleason 7 scores had 45% incidence.

    My thought, is that waiting for treatment after positive diagnosis of cancer may give you a higher probability of increasing Gleason score thus a higher probability of cancer returning. This seems to contradict the validity of AS altogether. I went this route, had a higher Gleason on post-op pathology (a common occurrence), and wonder if I am at a higher risk later in life because i did AS.
    T1c N0 M0
    Did 24 months Active Surveillance
    Age 63 July 2011 PSA 7.9 DRE negative with normal size
    August 2011 Biopsy 1% of 1 of 12 cores Gleason 6
    April 2012 PSA 8.1
    Age 64 August 2012 Biopsy 1,5,5% of 3 of 12 cores Gleason 6
    December 2012 PSA 8.4
    April 2013 PSA 12.4
    MAY 2013 PSA 13.1
    Age 65 July 16, 2013--DaVinci Robotic Assisted Radical Prostatectomy
    July 2013 Pathology post-op 15% glandular involvement Gleason 4+3=7
    Negative margins & 0 0f 9 Lymph Nodes involved
    November 2013 PSA <0.01
    February 2014 PSA <0.01
    May 2014 PSA <0.01

  9. #9
    I was a "single core 3+4, 5%". Decided to have DaVinci, turns out I had 4+3 and more widespread than the biopsy suggested.

    Definitely get that second opinion, and research whether a "saturation biopsy" would give you and your Dr additional data for your decision. Good luck.
    BD: 1959 PSA 4.9 11/2012 (no symptoms)
    Biopsy 12/2012 Negative
    PSA 5.9 05/2013 (still no symptoms)
    Biopsy 6/2013 3+4 (thank goodness for PSA tests)
    1 core positive (upper left), 1 suspicious (lower left) out of 12
    DRE: bump right side T1c; PCA-III = 20 (normal)

    Da Vinci 7/18/2013: Invasive carcinoma involves left lobe of prostate only, extends from left apex to posterior mid region of left lobe Gleason 7/10 (4+3); G4 tumor comprises 75% of invasive carcinoma present
    Estimated total volume of carcinoma in entire prostate gland: 10%
    TNM: T2b NX MX (Stage IIA)

    8/13 11/13 2/14 8/14 2/15 8/15 3/16, 8/16, 3/17,9/17,4/18, 9/18 PSA undetectable
    3/19: .1 (damn), 4/19,6/29 retests: .1 (damn)


    My Story:
    T-Minus-36-Hours-until-da-Vinci...
    Catheter is Out!

  10. #10
    I was a "single core 3+4, 5%". Decided to have DaVinci, turns out I had 4+3 and more widespread than the biopsy suggested.

    Definitely get that second opinion, and research whether a "saturation biopsy" would give you and your Dr additional data for your decision. Good luck.
    BD: 1959 PSA 4.9 11/2012 (no symptoms)
    Biopsy 12/2012 Negative
    PSA 5.9 05/2013 (still no symptoms)
    Biopsy 6/2013 3+4 (thank goodness for PSA tests)
    1 core positive (upper left), 1 suspicious (lower left) out of 12
    DRE: bump right side T1c; PCA-III = 20 (normal)

    Da Vinci 7/18/2013: Invasive carcinoma involves left lobe of prostate only, extends from left apex to posterior mid region of left lobe Gleason 7/10 (4+3); G4 tumor comprises 75% of invasive carcinoma present
    Estimated total volume of carcinoma in entire prostate gland: 10%
    TNM: T2b NX MX (Stage IIA)

    8/13 11/13 2/14 8/14 2/15 8/15 3/16, 8/16, 3/17,9/17,4/18, 9/18 PSA undetectable
    3/19: .1 (damn), 4/19,6/29 retests: .1 (damn)


    My Story:
    T-Minus-36-Hours-until-da-Vinci...
    Catheter is Out!

 

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