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Thread: What I Need to Know About Active Surveillance

  1. #111
    Moderator Top User HighlanderCFH's Avatar
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    Hi Darius,

    There are two ways to look at waiting before having surgery. In the first category, there are those who may wish they had waited, perhaps because it was a low-risk case that had bad side effects.

    In the second category, there are those who waited under the assumption of low risk cancer -- only to find that there was also an aggressive tumor in there all along, and they wish they had NOT waited.

    So it's good to remember that the biopsy report is only an ESTIMATE of what is going on inside the prostate. Biopsies do miss other tumors somewhere around 20+% of the time.

    There really is no way to know until the excised prostate is examined under the scope.

    Yes, some "experts" insist that Gleason 6 should not be referred to as cancer. But their reasoning is based on the fact that some uros may tend to overtreat their patients -- and a declassification of Gleason 6 would tend to reduce this.

    They may have a point in the sense that Gleason 6 cancer cells cannot survive outside of the prostate and, hence, virtually never metastasize. But, until we have a sophisticated scan that can locate and classify prostate cancer cells, in lieu of a biopsy, it can be a risk to not go for one of the conventional treatment options.

    In your case, it sounds like you are doing the right thing by being on AS and keeping close tabs on it.

    Also, in case I forgot, wishing you a welcome to the forum.
    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.
    Five annual post-op exams 2012 through 2016: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns blue.
    NOTE: ED caused by BPH, not the surgery.

  2. #112
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    For balance, I wish I had my surgery sooner. I let my G6 get too large. It was also upgraded to a G3+4 after the surgery. In hindsight, I would have enrolled into a professionally managed AS program with a major cancer center 5 years earlier. I would have benefited from a more aggressive diagnostic phase, had a better idea of what I really had, and been more informed on my options. I still would have chosen surgery, only sooner.

  3. #113
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    Quote Originally Posted by HighlanderCFH View Post
    So it's good to remember that the biopsy report is only an ESTIMATE of what is going on inside the prostate. Biopsies do miss other tumors somewhere around 20+% of the time.
    That's why its so important, if someone is on AS to have repeated biopsies.

    Not so much to see if the disease has progressed, but to see if something was missed during the previous biopsies.
    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.

  4. #114
    A new study of 114 AS patients followed for 4 to 10 years.
    They were monitored by MRI, using biopsies only when the MRI was significantly suspicious. In this way, some 14 of the 114 were upgraded and treated.

    This study supports the use of MRI's, rather than biopsies, as the default monitoring mechanism.

    https://prostatecancerinfolink.net/2017/03/17/24541/
    Last edited by ASAdvocate; 03-21-2017 at 08:50 PM.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Five biopsies from 2009 to 2014. The third and fourth biopsies were positive with one core and three cores <5% and G 3+3. Fifth biopsy was negative.
    OncotypeDX: 86 percent chance of PCa remaining indolent
    August 2015: tests are stable; no MRI or biopsy this year for my AS program
    August 2016: MRI unchanged from 2/2014; PSA=3.9; FPSA=26; PHI=28. No biopsy necessary.

    A NOTE ON PSA: My readings have been erratic for over 10 years; typically being 3.5-4.2, but spiking to over 10 at times.
    These spikes are asymtomatic to me, and resolve themselves. A prostate biopsy can triple the PSA, which lasts for months.
    Last Free PSA was 26. I don't worry about PSA spikes anymore.

  5. #115
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    Quote Originally Posted by ASAdvocate View Post
    A new study of 114 AS patients followed for 4 to 10 years. 14 of them
    They were monitored by MRI, using biopsies only when the MRI was significantly suspicious. In this way, some 14 of the 114 were upgraded and treated.

    This study supports the use of MRI's, rather than biopsies, as the default monitoring mechanism.

    I'm supposed to be getting an MRI this spring as part of the AS protocol.

    The original plan the doctor at UPMC laid out was for another biopsy- but made the switcheroo to MRI- which will be something new to me.
    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.

  6. #116
    Super Moderator Top User Baz10's Avatar
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    As a rider to the above, I'm due for a T3 MRI this coming August as following my recent biopsy sepsis. They or should I say my URO's MDT. Committee consider in future comparable MRI's are the best course as well as 3 or 6 monthly PSA's and only intervene with a biopsy if there is more than a PSA variation of more than 3 points and or "the areas of interest" increase.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20.
    Prostate Cancer confirmed Gleason 3+3.
    Active surveillance for time being.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile.

  7. #117
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    AS Forum

    Quote Originally Posted by ASAdvocate View Post
    A new study of 114 AS patients followed for 4 to 10 years.
    They were monitored by MRI, using biopsies only when the MRI was significantly suspicious. In this way, some 14 of the 114 were upgraded and treated.

    This study supports the use of MRI's, rather than biopsies, as the default monitoring mechanism.

    https://prostatecancerinfolink.net/2017/03/17/24541/
    ASAdvocate, do you know if there are specific AS forums? I'm aware of the AS discussion on "Us TOO" but I'm curious if there are other forums. Because I can't have an MRI, I'd like to learn about other AS protocols for people that can't have an MRI. I know I can have a saturation biopsy/transperineal template-mapping biopsy, PHI, free PSA test, however, my urologist wants to stay with PSA every 6 months and depending on the velocity, additional biopsy's. I'm an excellent AS candidate, especially with my last 2 PSA's of 2.5 and 2.9.

    Last year, I had a consult with the AS lead urologist at MSK. He said PSA's every 6 months and repeat biopsy's every 2-3 years. He also told me not to be concerned unless my PSA went above 10. I would certainly see him again if my PSA rises above 5.
    Active Surveillance
    PSA - May 2014 - 2.1, Oct. 2015 - 3.4, April 2016 - 4.0, Oct. 2016 - 2.5, April 2017 - 2.9
    Age 67
    TRUS Biopsy - May 2016
    Prostatic adenocarcinoma involving the right lateral apex.
    One Core - Gleason score 6 (3+3) involving one of two fragments, less than 5% of the tissue.
    Repeat TRUS Biopsy - July 2016
    Prostatic adenocarcinoma involving the right lateral mid.
    One Core - Gleason 6 (3+3) less than 5% of the tissue.

    July 2007 - Heart Attack - 2 Stents
    August 2007 - Defibrallator Implanted
    Can't have an MRI
    2012 - Gallbladder Removal

  8. #118
    Moderator Top User HighlanderCFH's Avatar
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    Good luck with your search, mitch. As ASA knows, forum rules prohibit us from giving names/links of competing sites in the open forum. HOWEVER, he is very welcome to send you a PM with such information if he has any.

    You can also do a Google search using the appropriate phrasing and hopefully will find one.

    Best of luck to you.
    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.
    Five annual post-op exams 2012 through 2016: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns blue.
    NOTE: ED caused by BPH, not the surgery.

  9. #119
    Mitchden, I really am not aware of any specific AS forums other than the one you cited, and I see a lot of the same posters there pushing their opinions. I participate in four PCa forums, and AS is a regular topic. but usually randomly in a general forum.

    I think that Chuck had the best suggestion, just Google it every way you can think of. For example, "prostate active surveillance forums" will get you some interesting hits, and ALL that information is useful.

    Given your contraindication with MRI's, the recommendation from the MSKCC specialist sounds logical.
    Last edited by ASAdvocate; 06-01-2017 at 03:02 AM.
    DOB: May 1944
    In Active Surveillance program at Johns Hopkins
    Five biopsies from 2009 to 2014. The third and fourth biopsies were positive with one core and three cores <5% and G 3+3. Fifth biopsy was negative.
    OncotypeDX: 86 percent chance of PCa remaining indolent
    August 2015: tests are stable; no MRI or biopsy this year for my AS program
    August 2016: MRI unchanged from 2/2014; PSA=3.9; FPSA=26; PHI=28. No biopsy necessary.

    A NOTE ON PSA: My readings have been erratic for over 10 years; typically being 3.5-4.2, but spiking to over 10 at times.
    These spikes are asymtomatic to me, and resolve themselves. A prostate biopsy can triple the PSA, which lasts for months.
    Last Free PSA was 26. I don't worry about PSA spikes anymore.

  10. #120
    Regular User
    Join Date
    Apr 2011
    Posts
    30
    ASAdvocate, Thanks for your response. As you know, I can't have an MRI because of my defibrillator. That means, the only way to determine if my cancer is "progressing", is by having periodic biopsy's. I'm 67 so I will have more biopsy's that I care to think about. Maybe my urologist is right in that treatment is inevitable. A saturation biopsy or a template mapping biopsy are possibilities, however, I don't like the idea of having my prostate become a "pin cushion". Besides, I don't know the thinking of my urologist(s). If I get the same diagnosis after my next biopsy, I hope there's enough tissue available to do a genetic test. That would give me another data point, although that may not change the AS protocol. I understand there are parts of the prostate that are inaccessible to a TRUS biopsy and those areas typically can harbor higher grade cancers. That adds to my concern (and risk).

    If and when I need treatment, I will look into Cyberknife. Being very analytical, I know will struggle to make a treatment decision. I need to stop worrying about things I can't control. Easier said than done.
    Mitch
    Active Surveillance
    PSA - May 2014 - 2.1, Oct. 2015 - 3.4, April 2016 - 4.0, Oct. 2016 - 2.5, April 2017 - 2.9
    Age 67
    TRUS Biopsy - May 2016
    Prostatic adenocarcinoma involving the right lateral apex.
    One Core - Gleason score 6 (3+3) involving one of two fragments, less than 5% of the tissue.
    Repeat TRUS Biopsy - July 2016
    Prostatic adenocarcinoma involving the right lateral mid.
    One Core - Gleason 6 (3+3) less than 5% of the tissue.

    July 2007 - Heart Attack - 2 Stents
    August 2007 - Defibrallator Implanted
    Can't have an MRI
    2012 - Gallbladder Removal

 

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