A million overdiagnosed—and counting

CharlieG

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

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.

Hoosierdaddy

PSA
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

Hoosierdaddy said:

PSA
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.

Baseline
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

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

I guess he doesn't have prostate cancer.

boatteam

Trew said:

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.

Thanks to erisian for suggesting this thread
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

boatteam said:

Thanks to erisian for suggesting this thread
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

2nd Opinion on Biopsy
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 optimistic

Swingshiftworker said:

2nd Opinion on Biopsy
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.

Hi Swingshift
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

hopeful and optimistic said:

Hi Swingshift
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

Prostate Ultrasound
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 optimistic

Swingshiftworker said:

Prostate Ultrasound
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

At ucla, I had .....
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

Swingshiftworker said:

2nd Opinion on Biopsy
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.

Yes, here's to that!
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!