Studies of Young Guys with Low level PCa

fdg
fdg Member Posts: 6 Member

Hello all: 

My first post.  My stats are below. Looking for studies re: longer expected life spans. Most all I have read are limited at 5 or 10 years. One of my issues is that I am 52 and though fairly low risk cancer, I'm reticent to just do active surveillance as it appears that even two years out, around 20% of the AS crew have an acceleration of their disease strong enough to require treatment, and when RP is done, without AS, that of those with Gleason 6, around 20% or more of the time, they are found to have a Gleason of 7 or 8 during pathologic study of the removed prostate. 

Does anyone know of sources for long term studies or better information from the perspefctive of the 50 something guy? 

 

Thanks in advance, I appreciate it. 

 

Fin

 

52 Yrs Old 

.6 (2013), 6.19 (Jan 2017), 4.91 (Feb 2017), 5.30 (May, 2017)

Biopsy last week, 3 of 12 positive, 3 different lobes of the gland, Gleason of 6, 

No family history, nonsmoker, 25 lbs overweight but fit and active. 

Comments

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    The "acceleration" that you

    The "acceleration" that you mentioned is most likely not caused by the cancer rapidly growing, but by the discovery of more cancer that was already there. 

    In a formal AS program, like Johns Hopkins, enrollees must have an MRI and then a confirmatory fusion biopsy within six months. Plus, other tests like OncotypeDX amd six month PHi intervals. That is where the upgrades are discovered and people are filtered out of AS and into treatment.

    I have been on AS for eight years, and expect to be on it the rest of my life.

     

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Nine years for me in an AS program

    You mention, three cores positive with 3+3=6 ; what was the percent involvement (cancerous) of each core that was positive?.......There are guidelines for those who have indolent disease, that is not likely to spread and are eligible for an AS program, so the question. 

    click my name to the left to see what monitoriing I have undergone and the results..............also I list various studies and resources about AS

  • fdg
    fdg Member Posts: 6 Member

    Nine years for me in an AS program

    You mention, three cores positive with 3+3=6 ; what was the percent involvement (cancerous) of each core that was positive?.......There are guidelines for those who have indolent disease, that is not likely to spread and are eligible for an AS program, so the question. 

    click my name to the left to see what monitoriing I have undergone and the results..............also I list various studies and resources about AS

    Whoops, sorry forgot to add

    Whoops, sorry forgot to add that. Two cores were only 5% but the third was 20%.  And thanks for the point-out to your info. Will review. 

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    In a direct answer to you

    In a direct answer to your question about long term studies, the Johns Hopkins AS program was started in 1994. They have lost two patients to prostate cancer, which gives that program a 99+ percent success rate. 

    Now, about one-third of those who started the program dropped out due to biopsy upgrade or just emotional pressure. But, they are part of the statistics, so their being in the program, and later having treatment, did not affect their mortality. The point being made that a low risk person choosing AS and then needing treatment is not endangering their life span by having spent that time on AS versus immediate treatment.

     https://urology.jhu.edu/newsletter/2016/Discovery2016.pdf

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    AS is more than watchful waiting, It is for those with the guts

    FDG,

    I think you got good answers to your query from above survivors. In any case, you should know that they have chosen AS to follow their situation but they did not give up with a treatment. They simply postponed it to the timing when something has to be done, and if they die from other causes or age related while on AS then they have chosen the best therapy available today for prostate cancer.

    Statistics answer for themselves. As you commented, many (20% of AS group) stop and do surgery for whatever reason (as commented by ASAdvocate) they found. However, the intervention's future success rates do not alter statistically even if these guys had done surgery two years earlier. For instance, in your case, one could think that you have been living with cancer since 2013 (4 years) when the PSA was 6.19 ng/ml. You did nothing at the time but you also were not affected or die. You just got older, and now can say that a Gleason 6 guy untreated do not die of PCa in four years.

    Gleason score 6 is the lowest in risk for spreading but some grades 3 are more aggressive than others. There are also those cases when the pathologist is not inline with his other colleagues and disagree on what they saw under the microscopy. For some 3 is more like 4 or even a lower grade of 2 that was increased to 3 because of the regulations (PCa cell's grades 1 and 2 become 3 since 2005). Surely, one needs to gather more evidence on his disease, type and aggressivity, and clinical stage before deciding to follow AS.

    I hope you find a conclusion on the matter. In your shoes I would get second opinions on gathered data and from AS specialists like the Johns Hopkins, etc.

    Best wishes and luck in your journey.

    VGama

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    edited June 2017 #7
    Another long term study, Sunnybrook Research Institute in Toront

    Longest Prostate Cancer Active Surveillance Study Promising


    Kate Johnson

    April 14, 2014



     

     




    STOCKHOLM — The longest follow-up to date of active surveillance in patients with favorable or intermediate-risk prostate cancer shows that it is a safe and feasible approach for as long as 20 years after diagnosis.

    Men in the study cohort had early-stage disease and were managed with surveillance; they were treated only if there were signs of disease progression. Up to 20 years after diagnosis, 1.5% of the 993 men had died, and 3.1% had developed metastatic disease.

    In addition, death was 10 times more likely from other causes than from prostate cancer, reported Laurie Klotz, MD, from the Sunnybrook Research Institute in Toronto.

    "This is the longest, most mature follow-up with the explicit strategy of conservative management and selective delayed intervention," he toldMedscape Medical News. "Even at 15 to 20 years, the prostate cancer mortality rate is really very low, you've avoided treatment in the majority of patients, and even the ones treated late still had a long period of normal quality of life before they had treatment."

     

    Dr. Klotz presented the results here at the European Association of Urology 29th Annual Congress.

    At 5, 10,15, and 20 years after diagnosis, 75.7%, 63.5%, 55.0%, and 55.0% of patients, respectively, remain untreated and on active surveillance. During the follow-up period, 15 died from prostate cancer and 7 developed metastatic disease.

    Results Are Now "Slightly More Sobering"

    The prospective single-group cohort study enrolled men (median age, 69 years) with histologically confirmed prostate adenocarcinoma who had undergone no previous treatment. Definitive intervention was offered to patients if they had a prostate-specific antigen (PSA) doubling time of less than 3 years, Gleason score progression (to 4 + 3 or greater), or unequivocal evidence (including MRI) of clinical progression. The remaining 993 patients were followed with active surveillance.





    In an earlier follow-up of the patients, at a median of 6.8 years after enrollment, only 5 subjects had died of prostate cancer — all of them fairly early into their surveillance (J Clin Oncol2010;28:126-131). In all 5, it looked like their disease "wasn't preventable with earlier treatment," said Dr. Klotz. In the the latest analysis, median follow-up is 8.1 years. "But now it's slightly more sobering. We're starting to see some deaths in patients who have actually developed their metastases late. Perhaps if they'd been treated a decade before, they might have been cured."

    "The devil is really going to be in the details about these men who progressed," said session chair Matthew Cooperberg, MD, MPH, associate professor of urology at the University of California, San Francisco.

    "The question is how many men died of prostate cancer because they went on active surveillance instead of getting immediate treatment. The answer to that question is always going to be greater than 0," Dr. Cooperberg explained. "However, we all think that it's very, very, very low; it's far lower, most likely, than the number of men who are harmed or potentially harmed from overtreatment for low-risk disease."

    A similar sentiment was expressed by Chris Bangma, MD, PhD, professor and chair of urology at Erasmus University in Rotterdam, the Netherlands. Dr. Bangma is a principal investigator of the ongoing Prostate Cancer Research International: Active Surveillance (PRIAS) study, the largest worldwide prospective active surveillance study.





    "How do these survival results compare with the curative treatment that patients would have otherwise received if active surveillance did not exist? We do not know yet whether the active surveillance mortality numbers in the study by Dr. Klotz's team are comparable with those in radical prostatectomy studies," Dr. Bangma told Medscape Medical News. However, "it's my expectation that the study numbers will be far below those in the radical prostatectomy series, because the patients have been selected as having very low risk."

     

    At this stage, active surveillance "is a treatment approach in evolution," said Dr. Klotz. Research continues into how to refine the parameters for triggering intervention.

     

    "We've shifted to a more MRI-based evaluation of patients, which I think in the long run is going to change the shape of the time-to-treatment curve," he said. "When something doesn't seem right — either a patient has a short [PSA] doubling time or some small amount of Gleason pattern 4 — we now go to MRI; before, we treated them."




  • ASAdvocate
    ASAdvocate Member Posts: 193 Member

    Another long term study, Sunnybrook Research Institute in Toront


    Longest Prostate Cancer Active Surveillance Study Promising


    Kate Johnson

    April 14, 2014



     

     




    STOCKHOLM — The longest follow-up to date of active surveillance in patients with favorable or intermediate-risk prostate cancer shows that it is a safe and feasible approach for as long as 20 years after diagnosis.

    Men in the study cohort had early-stage disease and were managed with surveillance; they were treated only if there were signs of disease progression. Up to 20 years after diagnosis, 1.5% of the 993 men had died, and 3.1% had developed metastatic disease.

    In addition, death was 10 times more likely from other causes than from prostate cancer, reported Laurie Klotz, MD, from the Sunnybrook Research Institute in Toronto.

    "This is the longest, most mature follow-up with the explicit strategy of conservative management and selective delayed intervention," he toldMedscape Medical News. "Even at 15 to 20 years, the prostate cancer mortality rate is really very low, you've avoided treatment in the majority of patients, and even the ones treated late still had a long period of normal quality of life before they had treatment."

     

    Dr. Klotz presented the results here at the European Association of Urology 29th Annual Congress.

    At 5, 10,15, and 20 years after diagnosis, 75.7%, 63.5%, 55.0%, and 55.0% of patients, respectively, remain untreated and on active surveillance. During the follow-up period, 15 died from prostate cancer and 7 developed metastatic disease.

    Results Are Now "Slightly More Sobering"

    The prospective single-group cohort study enrolled men (median age, 69 years) with histologically confirmed prostate adenocarcinoma who had undergone no previous treatment. Definitive intervention was offered to patients if they had a prostate-specific antigen (PSA) doubling time of less than 3 years, Gleason score progression (to 4 + 3 or greater), or unequivocal evidence (including MRI) of clinical progression. The remaining 993 patients were followed with active surveillance.





    In an earlier follow-up of the patients, at a median of 6.8 years after enrollment, only 5 subjects had died of prostate cancer — all of them fairly early into their surveillance (J Clin Oncol2010;28:126-131). In all 5, it looked like their disease "wasn't preventable with earlier treatment," said Dr. Klotz. In the the latest analysis, median follow-up is 8.1 years. "But now it's slightly more sobering. We're starting to see some deaths in patients who have actually developed their metastases late. Perhaps if they'd been treated a decade before, they might have been cured."

    "The devil is really going to be in the details about these men who progressed," said session chair Matthew Cooperberg, MD, MPH, associate professor of urology at the University of California, San Francisco.

    "The question is how many men died of prostate cancer because they went on active surveillance instead of getting immediate treatment. The answer to that question is always going to be greater than 0," Dr. Cooperberg explained. "However, we all think that it's very, very, very low; it's far lower, most likely, than the number of men who are harmed or potentially harmed from overtreatment for low-risk disease."

    A similar sentiment was expressed by Chris Bangma, MD, PhD, professor and chair of urology at Erasmus University in Rotterdam, the Netherlands. Dr. Bangma is a principal investigator of the ongoing Prostate Cancer Research International: Active Surveillance (PRIAS) study, the largest worldwide prospective active surveillance study.





    "How do these survival results compare with the curative treatment that patients would have otherwise received if active surveillance did not exist? We do not know yet whether the active surveillance mortality numbers in the study by Dr. Klotz's team are comparable with those in radical prostatectomy studies," Dr. Bangma told Medscape Medical News. However, "it's my expectation that the study numbers will be far below those in the radical prostatectomy series, because the patients have been selected as having very low risk."

     

    At this stage, active surveillance "is a treatment approach in evolution," said Dr. Klotz. Research continues into how to refine the parameters for triggering intervention.

     

    "We've shifted to a more MRI-based evaluation of patients, which I think in the long run is going to change the shape of the time-to-treatment curve," he said. "When something doesn't seem right — either a patient has a short [PSA] doubling time or some small amount of Gleason pattern 4 — we now go to MRI; before, we treated them."




    It should be noted the above

    It should be noted the above study did not use the strict selection criteria for AS that Johns Hopkins has. Also, the diagnostic tools of the 1990's cannot compare to the array of products and knowledge available today. So, while the overall outcome of the study was favorable, I have little doubt that the stats would be closer to 100 percent if using today's advances.

  • fdg
    fdg Member Posts: 6 Member
    This is all really helpful!

    This is all really helpful!  I am meeting with two urologists next week and intend to get an MRI for additional information. I hope it shows  - Nothing!!  

    Fin

  • GeorgeG
    GeorgeG Member Posts: 152
    edited June 2017 #10
    Try to get a 3 Tesla Endo

    Try to get a 3 Tesla Endo Rectal coil multi parametric, dynamic MRI with contrast of it is available to you. That is the latest technology and finally produces images that have reasonable diagnostic value. Berfore that there were significant issues using imaging for PC diagnosis and confirmation.

     

    George

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Seeing the glass half empty

    FDG,

    I disagree with your statement. The image exam (your chosen MRI) should detect the bandit providing a positive result. As George comments above the diagnostic has been a pain in the neck because of its constant false negatives (traditional CT, MRI, Bone scan, etc). You can have higher probabilities of treatment success if you manage to identify and locate the hidden cancer.

    Discuss with the doctors in your next consultation if they could introduce you to sophisticated exams proper for PCa cases of Gleason score 6 and PSA=5.30 ng/ml. You may also inquire about a genetic test to identify the type of cells and its aggressivity.

    Best,

    VG

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
    Endo-rectal coil

    Regarding a 3Telsa MRI with endo-rectal coil, that is a VERY painful procedure, and Johns Hopkins stopped using that type of coil when they began using the 3T machines. The apron coils are sufficient for good images. If you have to endure an endo-rectal coil, you will never want another MRI.

  • GeorgeG
    GeorgeG Member Posts: 152
    I had the 3T Endo Rectal coil

    I had the 3T Endo Rectal coil scan and I refused the sedative that 90% accept and found it to be no big deal. I slept through most of it. The removal of the coil was a little exciting but it lasted one second and 20 minutes later we were having coffee at Starbucks. If there is a better coil now then that's great but I would do ER again without hesitation.

  • fdg
    fdg Member Posts: 6 Member
    edited July 2017 #14

    Seeing the glass half empty

    FDG,

    I disagree with your statement. The image exam (your chosen MRI) should detect the bandit providing a positive result. As George comments above the diagnostic has been a pain in the neck because of its constant false negatives (traditional CT, MRI, Bone scan, etc). You can have higher probabilities of treatment success if you manage to identify and locate the hidden cancer.

    Discuss with the doctors in your next consultation if they could introduce you to sophisticated exams proper for PCa cases of Gleason score 6 and PSA=5.30 ng/ml. You may also inquire about a genetic test to identify the type of cells and its aggressivity.

    Best,

    VG

    I understand. Thank you.

    I understand. Thank you.