A million overdiagnosed—and counting

erisian
erisian Member Posts: 107
edited March 2014 in Prostate Cancer #1
That's the title of the article...

"Since the late 1980s, for every one man helped by the PSA (prostate-specific antigen) test, about 20 men have been unnecessarily diagnosed and treated for prostate cancer. And that's an optimistic estimate. The real ratio is probably closer to 50 to 1. These are some of the conclusions of a recent study..."

Great news, huh?

http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php
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Comments

  • Trew
    Trew Member Posts: 931 Member
    I was not one of those
    I was not one of those misdiagnosed. I think ladies have the same problems with breast screening.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    Cancer is not Cancer???
    Are we trying to say now that the cancer found in Biopsy's is not deadly and a way for surgeons to buy thier next vacation home or boat?

    If that is the case I will be pretty mad....but...I just cannot believe that my tumor that was hmmmmm suposedly REAL....was not a danger and obvious shortner of my life left un-treated. It would take me a lot to convince me otherwise.

    Randy in Indy
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Thank you for posting this information
    Randy, actually there are docs (sharks) who want to make as much money as they can and look for customers........I had one.......this guy really wanted to f*^&%^%$ me up and make as much money as he could....he was a radiologist, last year told me that there was 40-50 chance that the cancer was outside the capsule, diagnosed me between 2c and 3b, wanted to give me unnecessary tests, and wanted to do external radiation as well as seeds....he wanted to do both to get the cancer.

    Also as the article stated, people want to get the cancer out of their bodies and are willing to be overtreated.

    But 50 to 1 does sound high to me

    Ira
  • jminnj
    jminnj Member Posts: 129

    Cancer is not Cancer???
    Are we trying to say now that the cancer found in Biopsy's is not deadly and a way for surgeons to buy thier next vacation home or boat?

    If that is the case I will be pretty mad....but...I just cannot believe that my tumor that was hmmmmm suposedly REAL....was not a danger and obvious shortner of my life left un-treated. It would take me a lot to convince me otherwise.

    Randy in Indy

    Randy and Trew,
    I agree with

    Randy and Trew,
    I agree with you completely. I don't feel I was misdiagnosed. To have a relatively low PSA (2.9) and have the full biopsy reveal that over 35% of the gland was impacted, I feel fortunate to have been diagnosed and treated.

    I would bet that if you went back to the beginning of the real emphasis on breast cancer awareness you might see a similar trend of a dramatic increase in the diagnosis. The guys that are in their 40s and 50s right now are really the first generation of guys that are getting tested this early. In the past everyone thought of this disease as something only guys in their 60s and 70s get. If it is found early enough, it can be treated and potentially cured, so I personally would like to see more men getting tested early. I know way too many guys who not only put off this test, but their annualy physicals, colonoscopy's etc. I for one am glad that my Primary Care doc started testing me a couple of years ago and was proactive when he saw a number that just looked slightly out of the ordinary.

    I would hate to think that there are urologists/oncologists out there preying on the fears of men getting diagnosed with PC. But I guess in this day and age nothing would surprise me.

    Take care,
    Joe
  • Trew
    Trew Member Posts: 931 Member
    jminnj said:

    Randy and Trew,
    I agree with

    Randy and Trew,
    I agree with you completely. I don't feel I was misdiagnosed. To have a relatively low PSA (2.9) and have the full biopsy reveal that over 35% of the gland was impacted, I feel fortunate to have been diagnosed and treated.

    I would bet that if you went back to the beginning of the real emphasis on breast cancer awareness you might see a similar trend of a dramatic increase in the diagnosis. The guys that are in their 40s and 50s right now are really the first generation of guys that are getting tested this early. In the past everyone thought of this disease as something only guys in their 60s and 70s get. If it is found early enough, it can be treated and potentially cured, so I personally would like to see more men getting tested early. I know way too many guys who not only put off this test, but their annualy physicals, colonoscopy's etc. I for one am glad that my Primary Care doc started testing me a couple of years ago and was proactive when he saw a number that just looked slightly out of the ordinary.

    I would hate to think that there are urologists/oncologists out there preying on the fears of men getting diagnosed with PC. But I guess in this day and age nothing would surprise me.

    Take care,
    Joe

    Fear Factor
    Preying on fear is an understatement. When I got the word from the urologist about my biopsey was about as vunerable has a person could be. To think that thee are doctors who would take advantage of that is criminal.

    But how many false PSA readings there are, I have no idea. I just remember the biopsey was not that much fun and I hate to thin of guys getting it on a false psa.
  • erisian
    erisian Member Posts: 107

    Thank you for posting this information
    Randy, actually there are docs (sharks) who want to make as much money as they can and look for customers........I had one.......this guy really wanted to f*^&%^%$ me up and make as much money as he could....he was a radiologist, last year told me that there was 40-50 chance that the cancer was outside the capsule, diagnosed me between 2c and 3b, wanted to give me unnecessary tests, and wanted to do external radiation as well as seeds....he wanted to do both to get the cancer.

    Also as the article stated, people want to get the cancer out of their bodies and are willing to be overtreated.

    But 50 to 1 does sound high to me

    Ira

    They can' t tell
    The trouble is, there is currently no way to tell which cancers will be aggressive and become metastatic, and which ones would never even be noticed or cause any problems with no treatment at all, ever. If they could test for that, apparently it would drastically reduce the number of treatments and surgeries.

    I'm metastatic, so I'm pretty sure I wasn't overdiagnosed! But it seems to me that the results of this study make a strong argument for "active surveillance" or "watchful waiting" in a lot of cases. The "just get it out" reaction to a PCa diagnosis is rather common, though - who wants to have cancer and not do anything about it?

    This study doesn't say anything about getting tested regularly. I think that it actually argues in favor of regular testing, since even after a positive biopsy, regular PSA testing would reliably show any increase in cancer activity.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    erisian said:

    They can' t tell
    The trouble is, there is currently no way to tell which cancers will be aggressive and become metastatic, and which ones would never even be noticed or cause any problems with no treatment at all, ever. If they could test for that, apparently it would drastically reduce the number of treatments and surgeries.

    I'm metastatic, so I'm pretty sure I wasn't overdiagnosed! But it seems to me that the results of this study make a strong argument for "active surveillance" or "watchful waiting" in a lot of cases. The "just get it out" reaction to a PCa diagnosis is rather common, though - who wants to have cancer and not do anything about it?

    This study doesn't say anything about getting tested regularly. I think that it actually argues in favor of regular testing, since even after a positive biopsy, regular PSA testing would reliably show any increase in cancer activity.

    very good post
    As a man who is on Active Surveillance, I find that my treatment decision is very rare on this board, with many diagnosed with low volume disease electing surgery, wanting to get the cancer out of their bodies, and not electing active surveillance.........I'm thinking that people are being diagnosed at an earlier age, and having aggressive treatment (in my opinion) at this age.

    There are various protocols for active surveillance, which includes mixtures of the following dependng on the resources and philosophy of the various hospitals or doctors; regular psa testing, biopsies every so often, mri's , molecular tests, as well as other tests.

    Additionally a minority of doctors take an active roll by prescibing Avodart to retart the growth of the cancer( there is clinical trials underway to evalute avodart for those with low volume cancer_

    Anyway in my case I am being closely monitored to see if the cancer is spreading. During the last year, except for having a sword over my head, held by a horse hair, I have gone on with my life.

    Ira

    Additionally a minority of doctors take an active roll by prescibing Avodart to retart the growth of the cancer( there is clinical trials underway to evalute avodart for those with low volume cancer_
  • active surveillance
    active surveillance Member Posts: 16

    Cancer is not Cancer???
    Are we trying to say now that the cancer found in Biopsy's is not deadly and a way for surgeons to buy thier next vacation home or boat?

    If that is the case I will be pretty mad....but...I just cannot believe that my tumor that was hmmmmm suposedly REAL....was not a danger and obvious shortner of my life left un-treated. It would take me a lot to convince me otherwise.

    Randy in Indy

    I think he just quoted and said.....
    that you are indeed the lucky one, out of 50 or more, that screening did help
  • erisian
    erisian Member Posts: 107

    very good post
    As a man who is on Active Surveillance, I find that my treatment decision is very rare on this board, with many diagnosed with low volume disease electing surgery, wanting to get the cancer out of their bodies, and not electing active surveillance.........I'm thinking that people are being diagnosed at an earlier age, and having aggressive treatment (in my opinion) at this age.

    There are various protocols for active surveillance, which includes mixtures of the following dependng on the resources and philosophy of the various hospitals or doctors; regular psa testing, biopsies every so often, mri's , molecular tests, as well as other tests.

    Additionally a minority of doctors take an active roll by prescibing Avodart to retart the growth of the cancer( there is clinical trials underway to evalute avodart for those with low volume cancer_

    Anyway in my case I am being closely monitored to see if the cancer is spreading. During the last year, except for having a sword over my head, held by a horse hair, I have gone on with my life.

    Ira

    Additionally a minority of doctors take an active roll by prescibing Avodart to retart the growth of the cancer( there is clinical trials underway to evalute avodart for those with low volume cancer_

    To Test or not...
    Another problem with not testing regularly is that the younger you are at diagnosis, the more likely it is that your cancer is aggressive. Mine was metastatic when I was 52, and there are others here even younger, some in their 40's. So it bothers me to see guidelines and studies coming out that discourage men in their 40's from getting tested.

    Another test is needed to screen the positive biopsies for aggressiveness. Too bad we don't have one.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    erisian said:

    To Test or not...
    Another problem with not testing regularly is that the younger you are at diagnosis, the more likely it is that your cancer is aggressive. Mine was metastatic when I was 52, and there are others here even younger, some in their 40's. So it bothers me to see guidelines and studies coming out that discourage men in their 40's from getting tested.

    Another test is needed to screen the positive biopsies for aggressiveness. Too bad we don't have one.

    test to screen the positive biopsies for aggressiveness

    There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.

    But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.

    I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284

    Ira
  • Slow down if you can avoid the knife !
    Active surveillance is in the "crap shoot twilight zone" right now... we are awaiting the forthcoming bio-marker/DNA tissue tests that will identify aggressive cancer. I would like to find someone near me that does this MRI spectroscopy, color-doplar ultrasound stuff and knows where to send my biopsy tissues for a best opinion--- A LOT TO ASk?!! My Urologist is from the Dark Ages and wanted to carve me right away ! This is why "AS" isn't a walk in the Park yet! And that PSA holy icon is misleading with its rise and falls.
    And T2s -on up- are the guys that need the best expertise we can give them/us.
    Soap box crashes beneath my feet
    Love and healing to all
  • CharlieG
    CharlieG Member Posts: 67

    very good post
    As a man who is on Active Surveillance, I find that my treatment decision is very rare on this board, with many diagnosed with low volume disease electing surgery, wanting to get the cancer out of their bodies, and not electing active surveillance.........I'm thinking that people are being diagnosed at an earlier age, and having aggressive treatment (in my opinion) at this age.

    There are various protocols for active surveillance, which includes mixtures of the following dependng on the resources and philosophy of the various hospitals or doctors; regular psa testing, biopsies every so often, mri's , molecular tests, as well as other tests.

    Additionally a minority of doctors take an active roll by prescibing Avodart to retart the growth of the cancer( there is clinical trials underway to evalute avodart for those with low volume cancer_

    Anyway in my case I am being closely monitored to see if the cancer is spreading. During the last year, except for having a sword over my head, held by a horse hair, I have gone on with my life.

    Ira

    Additionally a minority of doctors take an active roll by prescibing Avodart to retart the growth of the cancer( there is clinical trials underway to evalute avodart for those with low volume cancer_

    Active Surveillance
    I just got my diagnosis of PC. I am 51 and the diagnosis comes almost exactly 10 years after my 10 year older brother had his PC diagnosis. I am likely going to elect surgery as did my brother 10 years ago. I may not "rush" into it in the days or weeks ahead. It may be a month or so from now. However, I usually operate, at work, on the premise that hope is not a strategy - I want a treatment for cancer that benefits from the odds that one gets (I believe anyway) from early detection.

    I truly believe that each person's circumstance (age, amount found, etc.) has to considered and I would not blame anyone for choosing whatever they choose to do.

    This is a great forum and I have read many, many posts on here - all proving to be very helpful to me.

    Thanks for sharing, guys!
  • lewvino
    lewvino Member Posts: 1,010
    CharlieG said:

    Active Surveillance
    I just got my diagnosis of PC. I am 51 and the diagnosis comes almost exactly 10 years after my 10 year older brother had his PC diagnosis. I am likely going to elect surgery as did my brother 10 years ago. I may not "rush" into it in the days or weeks ahead. It may be a month or so from now. However, I usually operate, at work, on the premise that hope is not a strategy - I want a treatment for cancer that benefits from the odds that one gets (I believe anyway) from early detection.

    I truly believe that each person's circumstance (age, amount found, etc.) has to considered and I would not blame anyone for choosing whatever they choose to do.

    This is a great forum and I have read many, many posts on here - all proving to be very helpful to me.

    Thanks for sharing, guys!

    Charlie,
    Just curious what

    Charlie,
    Just curious what your PSA is and if you had biopsies yet. I'm assuming you did.

    I think active surveillance is great if you are in the right category. My doc told me that for my case it was to risky at a Gleason 7 (4+3) PSA and cancer found in 5 of the 12 biopsies.

    Larry (Age 55) Post surgery almost 7 months.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member

    Slow down if you can avoid the knife !
    Active surveillance is in the "crap shoot twilight zone" right now... we are awaiting the forthcoming bio-marker/DNA tissue tests that will identify aggressive cancer. I would like to find someone near me that does this MRI spectroscopy, color-doplar ultrasound stuff and knows where to send my biopsy tissues for a best opinion--- A LOT TO ASk?!! My Urologist is from the Dark Ages and wanted to carve me right away ! This is why "AS" isn't a walk in the Park yet! And that PSA holy icon is misleading with its rise and falls.
    And T2s -on up- are the guys that need the best expertise we can give them/us.
    Soap box crashes beneath my feet
    Love and healing to all

    I can totally Understand
    anyone who does not want to be cut on...who would in their right mind....but.... now in hind sight with my case...I am very glad to be rid of the prostate...heck all it ever does is cause a man problems...think about it...it cause one to have difficult urinating, it creates the mess in sex, it certainly is the impetus for ruining a perfectly good nights rest forcing many unwanted trips to the bathroom...so me...I am so glad they cut that sucker out and its gone...I can pee freely again. I sleep through the night...well almost...still training the bladder a bit...drinking beer now is my training for that during waking hours. So for some... the knife might just be what a person needs...it certainly was in my case! Now I will slink off my soap box. LOL

    Randy in Indy
  • erisian
    erisian Member Posts: 107

    Slow down if you can avoid the knife !
    Active surveillance is in the "crap shoot twilight zone" right now... we are awaiting the forthcoming bio-marker/DNA tissue tests that will identify aggressive cancer. I would like to find someone near me that does this MRI spectroscopy, color-doplar ultrasound stuff and knows where to send my biopsy tissues for a best opinion--- A LOT TO ASk?!! My Urologist is from the Dark Ages and wanted to carve me right away ! This is why "AS" isn't a walk in the Park yet! And that PSA holy icon is misleading with its rise and falls.
    And T2s -on up- are the guys that need the best expertise we can give them/us.
    Soap box crashes beneath my feet
    Love and healing to all

    PSA Roulette
    PSAs do indeed go up and down. It makes me wonder about the reliability of it for diagnosis in men with normal or near-normal levels. Mine has been as low as 0.4, and as high as 798. My last two were 164 and 113, just 20 days apart. I'm on chemo, but it still is a drop of 51 in three weeks, or about 2.5 per day. So it can change a lot in not much time, and with a near-normal number, I certainly wouldn't rush into any treatment on the basis of just a PSA test or two. There aren't any do-overs.
  • erisian
    erisian Member Posts: 107

    Slow down if you can avoid the knife !
    Active surveillance is in the "crap shoot twilight zone" right now... we are awaiting the forthcoming bio-marker/DNA tissue tests that will identify aggressive cancer. I would like to find someone near me that does this MRI spectroscopy, color-doplar ultrasound stuff and knows where to send my biopsy tissues for a best opinion--- A LOT TO ASk?!! My Urologist is from the Dark Ages and wanted to carve me right away ! This is why "AS" isn't a walk in the Park yet! And that PSA holy icon is misleading with its rise and falls.
    And T2s -on up- are the guys that need the best expertise we can give them/us.
    Soap box crashes beneath my feet
    Love and healing to all

    Oops. Flaky internet
    Oops. Flaky internet connection.
  • erisian
    erisian Member Posts: 107

    Slow down if you can avoid the knife !
    Active surveillance is in the "crap shoot twilight zone" right now... we are awaiting the forthcoming bio-marker/DNA tissue tests that will identify aggressive cancer. I would like to find someone near me that does this MRI spectroscopy, color-doplar ultrasound stuff and knows where to send my biopsy tissues for a best opinion--- A LOT TO ASk?!! My Urologist is from the Dark Ages and wanted to carve me right away ! This is why "AS" isn't a walk in the Park yet! And that PSA holy icon is misleading with its rise and falls.
    And T2s -on up- are the guys that need the best expertise we can give them/us.
    Soap box crashes beneath my feet
    Love and healing to all

    Can't Delete
    You can edit a post, but you can't delete it.
    If it's slow, don't try posting again, just wait.
  • erisian
    erisian Member Posts: 107

    Slow down if you can avoid the knife !
    Active surveillance is in the "crap shoot twilight zone" right now... we are awaiting the forthcoming bio-marker/DNA tissue tests that will identify aggressive cancer. I would like to find someone near me that does this MRI spectroscopy, color-doplar ultrasound stuff and knows where to send my biopsy tissues for a best opinion--- A LOT TO ASk?!! My Urologist is from the Dark Ages and wanted to carve me right away ! This is why "AS" isn't a walk in the Park yet! And that PSA holy icon is misleading with its rise and falls.
    And T2s -on up- are the guys that need the best expertise we can give them/us.
    Soap box crashes beneath my feet
    Love and healing to all

    Send it 4 times
    Then you end up looking like an idiot!
  • CharlieG
    CharlieG Member Posts: 67
    lewvino said:

    Charlie,
    Just curious what

    Charlie,
    Just curious what your PSA is and if you had biopsies yet. I'm assuming you did.

    I think active surveillance is great if you are in the right category. My doc told me that for my case it was to risky at a Gleason 7 (4+3) PSA and cancer found in 5 of the 12 biopsies.

    Larry (Age 55) Post surgery almost 7 months.

    PSA history
    Since my brother had PC diagnosed 10 years ago, I got a baseline test then.

    My PSA scores went something like this:
    1.9; 2.4; 3.0; 3.5; 4.0; 5.2; 6.2 at which time I agreed to a biopsy in which they took 12 samples and found nothing.

    My PSA then went down and down and down (I was taking "theralogix Prostate 2.3 http://www.theralogix.com/index.cfm?fa=products.prostate.default&dvsn=urology).

    The PSA then started back up again about 1 year later and and up and up. Now it was back in the 5.4 range.

    So I agreed to a "saturation biopsy". They took 41 samples based on my prostate being 41 cubic centimeters. This time, there were 2 positive samples, Gleason 3+3 = 6.
  • CharlieG
    CharlieG Member Posts: 67
    lewvino said:

    Charlie,
    Just curious what

    Charlie,
    Just curious what your PSA is and if you had biopsies yet. I'm assuming you did.

    I think active surveillance is great if you are in the right category. My doc told me that for my case it was to risky at a Gleason 7 (4+3) PSA and cancer found in 5 of the 12 biopsies.

    Larry (Age 55) Post surgery almost 7 months.

    PSA history
    Since my brother had PC diagnosed 10 years ago, I got a baseline test then.

    My PSA scores went something like this:
    1.9; 2.4; 3.0; 3.5; 4.0; 5.2; 6.2 at which time I agreed to a biopsy in which they took 12 samples and found nothing.

    My PSA then went down and down and down (I was taking "theralogix Prostate 2.3 http://www.theralogix.com/index.cfm?fa=products.prostate.default&dvsn=urology).

    The PSA then started back up again about 1 year later and and up and up. Now it was back in the 5.4 range.

    So I agreed to a "saturation biopsy". They took 41 samples based on my prostate being 41 cubic centimeters. This time, there were 2 positive samples, Gleason 3+3 = 6.