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A million overdiagnosed—and counting

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

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

Trew
Posts: 892
Joined: Jan 2010

I was not one of those misdiagnosed. I think ladies have the same problems with breast screening.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

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

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

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
Posts: 892
Joined: Jan 2010

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.

boatteam
Posts: 11
Joined: Apr 2010

Well another point of view I suppose, and with Billions of Dollaars on the table, I can actually see how doc's can get a bit greedy and want a piece of the pie. Suppose that is a good argument for finding a "good" doctor.

I'm really new here, but as a couple others that have posted here, I had PSA every five years during my annual physicals with normally 0 readings. After 50 I had a PSA of 4 then a couple month later over 5 couple months later 7.5 treated with Cipro and it dropped to 5 again. I am kind of a busy guy and even though the doc suggested a biopsy after the first 4 reading, I had none of the other indicators and my DRE's were all normal. Doc figured it was just family history, my dad has high PSA and has had several negative biopsys. A couple months ago doc checked it and it was just over 8 and I had agreed to go and get a biopsy if it was up. So I bucked up, took the 2-1/2 inch piece of rusty iron pipe with old poloroid camera on the end and grandma's old pinking shears and the doc went at it.

It came back from a "good Pathology lab" with 2 of 14 cores positive, with only 10% and 20% saturation of the core and both a 7 gleason. The absolute first question I asked my urologist was "how many false positives are recorded very year" His exact words were "this Lab never has false positives".

I have my new doc looking at the slides anyway, and I suppose there is hope that I am the "first" they have ever mis-diagnosised, however like some here I have made the decision to have it removed. If it is cancerous, it doesn't belong there and needs to come out. Hopefully I picked my Doctor right and he doesn't screw it up. I spoke to a couple of buddies who have been in the medical business for a long time. They are not Doctors, but guys I have trusted my life to in the past and they pretty much gave me the same advice, get it removed.
Guess this thread offers hope for some, including me that somebody "perfect" screwed up and mis-diagnosised or possibly sneezed during the process and mixed up the papers. My Grandmother used to tell me to never be perfect, someone will always try and crucify you.

Be Well

Swingshiftworker
Posts: 634
Joined: Mar 2010

Well, I just met w/Dr. Alexander Gottschalk, the Director of CyberKnife Radiosurgery at UCSF to discuss my prospects for CyberKnife treatment, which he thinks are (of course) very good because of the low and early nature of my "purported" cancer (T1c, Gleason 3,3 and PSA 4.5).

However, he also said that, based on the equivocal language of the Kaiser pathology report done on my biopsy in January, it is unclear whether I actually have cancer at all, and that a re-analysis of the biopsy slides would definitely have to be done at UCSF before any treatment is planned or scheduled.

I'll have to wait until July for a change in medical carriers to take effect following open enrollment before I can be covered for a new pathology report and any necessary treatment at UCSF but, in the meantime, I think I'm going to go ahead and get my biopsy slides from Kaiser and pay for a 2nd opinion myself by Dr. Epstein at John Hopkins University (who is supposed to be one of the best in analyzing prostate biopsy slides).

Of course, even if the report comes back negative from Dr. Epstein, that won't "prove" that I still don't have cancer because of the scatter gun nature of prostate biopsies, but it will at least negate the need for any immediate treatment and dictate "active surveillance" instead. UCSF actually has an Active Surveillance Program involving over 600 men (only 20% who have received any form of treatment in the past 3 years), which includes quarterly PSA tests, a prostate ultrasound every 6-12 months and a re-biopsy every 1-2 years.

I'd certainly prefer to be a participant in the Active Surveillance Program at UCSF rather than to be forced into prematurely choosing an unnecessary treatment (of any kind) based on an erroneous pathology report. Here's hoping that the Kaiser pathology report is, in fact, mistaken.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

Great idea to follow up at John's Hopkins......not that expensive, and certainly worthwhile....say you mentioned "prostate untrasound" Tell me what is that?...thanks........Ira

Swingshiftworker
Posts: 634
Joined: Mar 2010

It's just same transrectal ultrasound (TRUS) imaging of the prostate that was used to take my biopsy, but in terms of "active surveillance" it's only used to measure the volume (size) of the prostate (as was done when I went for a brachytherapy consultation) and to determine the existence and location of any detectable prostate tumors and whether or not those tumors have extended beyond the prostate itself.

UCSF also offers the color doppler ultrasound, which supposedly helps to better identify such tumors, but I'm not sure if it's included as a normal part of UCSF's Active Surveillance program or just for more advanced cancers where the possibility of the involvement beyond the prostate is more likely.

See the following article for a general discussion of TRUS and color doppler analysis of prostate cancer: http://www.prostate-cancer.org/education/staging/Bahn_ColorDopplerUltrasound.html

hopeful and opt...
Posts: 1317
Joined: Apr 2009

a mri with a spectrocopy when I was first put on active surveillance..I did not have any transrectal ultrasound ..I spoke with my do about the color doppler, and apparently the mri is the preferred, unless a patient is unable to have one, then the color doppler...now my doc does not think much of the color doppler( and because my opinion of this doc is very high, I go along with him)....that said, there is a doctor, Duke Bahn in ventura , so ca who is supposed to be an expert on this procedure......there are men at a support group that I frequent from time to time who swear by this, and have it done.....he has a pretty big following.......I don't know if you ever saw the print out results of this doppler test, but it is in color which indicates where the tumors are..it is pretty impressive looking......

Tomorrow I have an appt with my doc at ucla, it's about a year now, so I will see what he wabnts to do next

Ira.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

It will be very interesting to see how this all works out.

It occurred to me that the 20 or 50 to 1 ratio was just about reversed for the members of this group. That is to say that there isn't one out of twenty here that was 'overdiagnosed'. So, according to the Dartmouth numbers, the overdiagnosed are under-represented here by a huge margin. It would be nice if we had at least one token overdiagnosee!

Here's to Swingshift being overdiagnosed!

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

that you are indeed the lucky one, out of 50 or more, that screening did help

hopeful and opt...
Posts: 1317
Joined: Apr 2009

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

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

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 opt...
Posts: 1317
Joined: Apr 2009

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_

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

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 opt...
Posts: 1317
Joined: Apr 2009

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

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

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's picture
lewvino
Posts: 1006
Joined: May 2009

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.

CharlieG's picture
CharlieG
Posts: 67
Joined: Mar 2010

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's picture
CharlieG
Posts: 67
Joined: Mar 2010

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's picture
CharlieG
Posts: 67
Joined: Mar 2010

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's picture
CharlieG
Posts: 67
Joined: Mar 2010

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.

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

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

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

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's picture
erisian
Posts: 109
Joined: Dec 2008

Oops. Flaky internet connection.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

You can edit a post, but you can't delete it.
If it's slow, don't try posting again, just wait.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

Then you end up looking like an idiot!

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

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.

Hoosierdaddy's picture
Hoosierdaddy
Posts: 16
Joined: Mar 2010

I have read that too. However in my case I have had a PSA test since age 40 as part of an annual physical. After a very gradual rise from 1.0 to 1.7, the test at age 50 showed that my PSA had doubled since the previous year to 3.4, so a biopsy was recommended. The biopsy was negative. PSA continued to rise gradually until it doubled between age 53 and age 54, so I reluctantly had another biopsy. It was positive in 3 of 8 samples: 3+3, 3+3, 3+4. I have never had any symptoms of any prostate disorder, and the DRA was negative. So only the PSA test caught it.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

The difference there is that you had a solid baseline, and a clear decrease in the PSA doubling time. That is the way the PSA test should be used! But now with these new guidelines, and this "overdiagnosis" stuff, fewer men are going get tested at all, much less regularly. It's a giant step backward, IMO.

You did it right, and that's what they should be recommending - more testing, not less! More testing would lead to fewer biopsies and less treatment, because they wouldn't be doing biopsies after a single, slightly elevated PSA test that might be normal for that person. The decision to do a biopsy, like yours, would be based on a good set of data instead of a single point. The cancer gets caught early, and with the good baseline data, the PSADT is a reliable indicator of aggressiveness, so needless treatments can be avoided.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

What can I say?
http://www.nytimes.com/2010/03/10/opinion/10Ablin.html?ref=opinion

I guess he doesn't have prostate cancer.

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