Dr. Strums words on tests, like scans and small snipet from P2P he posted for public display on PCa

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zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 3/30/2010 8:41 AM (GMT -6)   
Me I enjoy hearing the facts and truthfulness from someone considered a real expert and whom has treated patients at about every level and scenario possible...the real deal, but you don't have to agree. His words from P2P which is on the internet, considered free education.
 
<Stephen Strum, MD> And here's the absurdity of so-called "modern"
medicine.  The CT scans of the pelvis and abdomen are so insensitive
as tests of lymph node status that the volume of cancer has to be
huge to have these tests become abnormal. In other words, LOW
sensitivity means MANY FALSE NEGATIVES.  So the patient is given a
false sense that all is well.  The Bone Scan is also seriously
insensitive.  These tests have much better specificity which means
that if the test is ABNORMAL, then the disease is really there.  But
if it takes a very large tumor volume to turn these tests from
negative to positive, this means that a lot of patients will be
treated inappropriately.

The CRIMINAL aspect of all of the above is that:

1. We spend about a half billion dollars a year ANNUALLY in the world
on tests that do not portray the reality of the patient.
2. We expose the patient to radiation involved with CT scanning in
settings that often we can predict the results just based on the
above analysis.
3. We have FAR BETTER TECHNOLOGY to assess nodal involvement by PC in
a test called COMBIDEX (SINEREM) in Europe-- but our FDA and the
European FDA rejected approval of this test.
4. Patients are treated based on misleading results of CT and Bone
scanning and this costs LIVES and additional billions of dollars on
treatments doomed to failure.
5. Patients could be more appropriately treated if their STATUS were
determined more accurately and the appropriate STRATEGY selected.
6. Our elected "leaders" ***** about the cost of healthcare in our
country while the above findings continue to be ignored.

WHEN WILL PATIENTS AND THEIR LOVED ONES ACT AS IF THEY HAVE HAD
ENOUGH OF THIS NONSENSE.  WHEN WILL THE PC SUPPORT GROUPS STOP BEING
SO POLITICALLY CORRECT AND GET THEIR ORGANIZATIONS UNITED TO MAKE A CHANGE.

"Our lives begin to end the day that we become silent about things
that matter."
-Martin Luther King
=========================================================================
Myself I love it, straight up and let it be heard to the patients...change is possible with efforts (zufus).
 
Compare this docs assessment to your docs assessment on scans or similar testings, just for fun.smile
 
Youth is wasted on the Young-(W.C. Fields)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 3/30/2010 8:47 AM (GMT -6)   
Good post, the only one's possibly offended would be the guilty.

There should be strict rules for approving the scans and bone scans with a pc dx. Perhaps none given with a PSA below 20, or nothing below Gleason 7, something along those lines.

If the money wasted each year just in the USA along on these PC related tests could pay for years of research instead.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14 out - 27 days, Cath #15 - 3/29


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/30/2010 9:52 AM (GMT -6)   
Hi Dave, alot of money being unrighteously made on patients in various ways. But, hey I should never question anything???
Youth is wasted on the Young-(W.C. Fields)


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 3/30/2010 10:22 AM (GMT -6)   
I have read that this sort of testing is motivated by doctors/hospitals adding yet another profit center to a patient visit, much like adding extras on a vehicle sale I suppose. And, I guess this can happen. What seems far more likely to me is that doctors and hospitals are in fear of being dragged before some committee or other after a patient or family, complains the medical profession was less than stellar, or plain incompetent. The doctors/hospitals may know the tests are less than useful, but they also the lawyer can't say to them, "How could you make that decision without even ..... ! ! Isn't "X" test standard in these situations?" I'm not suggesting we blame the lawyers. They are just the messengers for our society which is seeking 'perfect' and when bad stuff happens seek retribution and compensation. Perhaps that's as it should be, but there is a cost. A huge cost. And, in the end, the care we receive may actually be worse than it would be if we were less inclined to sue when bad things happen to good people.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02  
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
Feel free to email me at:  sheldonprostate@yahoo.com    


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 3/30/2010 10:38 AM (GMT -6)   
I've been harping on this type of medicine for quite a while. I really don't know whether it is really doctors who are trying to get more money from the system or because of lack of knowledge. The normal tests given for stating are worthless and many staging tests that are of value are are not even mentioned to the patients. Many patients are rushed into a treatment without the proper knowledge about their particular cancer, and we wonder why 30% of those treatments fail.
Having been on both sides of what Dr Strum is talking about, I appreciate his approach as it saved me from a recommeded treatment that would have surely failed. I can't emphasize enough the importance of getting proper staging from a specialist that knows what he is looking at.
"Few men die from PC; but many make quite a good living from it"
Zufus: do you have a link to P2P?
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/30/2010 11:00 AM (GMT -6)   

zufus, Strum has been strong on this point for some time.  His book "A Primer on Prostate Cancer - The Empowered Patient's Guide" says:

"Unfortunately, a CT scan of the pelvis and of the abdomen is routinely ordered in virtually all newly diagnosed men with PC. However, it is our contention, based on published literature, that this is a serious waste of healthcare dollars while exposing the patient to unnecessary radiation and inconvenience.... For at least 90% of men undergoing baseline staging procedures, a CT scan of the pelvis is not indicated. In 99.9% of all newly diagnosed patients with PC, a CT of the abdomen is definitely not needed...."

The Primer advises routine bone scanning if the PSA is over 10, but points out that for newly diagnosed patients with a PSA not exceeding 10, there is an abnormal bone scan in only half a percent of patients.  I like to see doctors being more direct and to the point, as in the P2P posting you provided, in speaking on waste of our scarce medical resources in such needless tests.

 

It seems, in fact, to be relative common knowledge.  The AUA's Prostate Specific Antigen Best Practice Statement, 2009 Update also has these two passages:

  • Routine use of a bone scan is not required for staging asymptomatic men with clinically localized prostate cancer when their PSA level is equal to or less than 20.0 ng/mL.

and

  • Computed tomography or magnetic resonance imaging scans may be considered for the staging of men with high-risk clinically localized prostate cancer when the PSA is greater than 20.0 ng/mL or when locally advanced or when the Gleason score is greater than or equal to 8.

reference:  http://www.auanet.org/content/guidelines-and-quality-care/clinical-guidelines/main-reports/psa09.pdf

 
Had I been educated enough at the time, I would have declined these tests.  As it were, my urologist prescribed these very early in my journey before I had much of a chance to learn and educate myself...I think this is very common.  Patients are very scared of the "C" word, and grasp for straws.  Doctors (not all) are generally irresponsible to hustle patients into unnecessary tests, and often on to unnecessary radical treatments. 
 
Glad to see Strum speak more boldly about the state of affairs in his own community of urologists.
 
best wishes...

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/30/2010 2:28 PM (GMT -6)   
Thanks for adding to this discussion Casey and John and others, Johns journey is our home evidence on the various scans and how that all worked out, which scan would you choose based upon what John's has shown and what would you think of those others of which all of them cost more (each), too (except maybe color doppler)-found nothing in those other scans, also and those docs lead the patient to believe they were worthy.  I don't think a bunch of these docs don't know what combidex is or maybe who is Dr. Strum  (they may play dumb) I doubt they are that blind to 'their field', although some of them likely are to busy counting money.
 
The website for signing up to get on Patient 2 Physichian  (P2P):   www.prostatepointers.org/p2p/  
(great discourse in advice on real time patients and suggestions and advice from doctors like- Strum, Barken, Scholz and maybe some others)
 
I understand the lawsuit thoughts about scans, but why mislead patients, the docs should be totally frank and tell us like it is...of course we would put pressure on the system, but it needs fixing in all kinds of places. ALot of patients and/or their wives are totally mislead to believe...clean scan..clear sailing...no cancer to ever worry about again. It is sad that the truth is not given forthwith and outrightly it could be phrased nicely with a ribbon and bow if necessary, but package the truth.
 
My brothers wife is a multiple myleaoma patient, makes PCa look tame by comparison.  He went to Mayo Clinic and many other name brand hospitals and docs, all wanted to do extensive chemo and radiations and alot of stuff, he did spend $80,000 approx. in tests and some high priced drugs. One protocol he mention would have cost  $50,000 for 2-months worth (such a deal). Well he has done alot of homework and the doc in the Bahama's that charged him like nothing said he couldn't personally do squat (and this was his specialty), but suggested mega doses of D3 and maybe diet stuff. So far she has improved hugely and can walk 1 mile, a year ago couldn't walk 50' without being exhausted. Blood work has improved, no shes' not cured, by maybe a remission thing...his expenses in the last few months getting blood tests, urine tests and such he says has been in the few hundreds range. A good while back her kidneys looked like failing from this disease, hospital recommended a kidney transplant, that was about 1 yr. ago...see how necessary that was!!!  We need to question plenty and for these kinds of reasons. (I think her doses of D3 were ultra high like 50-60,000 units a day...way beyond what we would take, but we don't have mulitple myleoma. This is what I seem to have from my brother...I may be missing some info, he does not share details to well.


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 3/30/2010 2:35:42 PM (GMT-6)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6898
   Posted 3/30/2010 3:31 PM (GMT -6)   
My surgeon had me do the CT and bone scans after a brutal biopsy report, and was upfront - it was not to see how far along I might be, but instead, if either had been positive, he would take surgery off the table, as that would have told him I was too late for that.

Seeing what the insurance company really paid (and therefore what the Hospital and doctors were willing to take), and the day of my time, I don't regret the tests. They left me at least knowing that I was not as bad off as I could have been.

Tests - my cousin is a retired GP who also was the local OB-GYN. He quit early, and closed up the only practice in his town. He had refused to go overboard with tests, and had been sued several times over the last few years for very minor issues. He did not lose a case, and his insurance company never paid a penny to settle or in damages. But he got to the point that the hassle of the courts was bigger than the joy of delivering children, so he quit. The "price" paid was not the cost of tests in the end, but in the loss of a practicing physician. So I am often unable to take a side. I've seen excess tests, but I have also seen excess profits.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 3/30/2010 5:23 PM (GMT -6)   
Kind of worrisome as I got a large bit of relief from my "negative" bone scan after my biopsy came back G-9 (later reduced) I'm kind of on the same page as 142 at least it's some comfort knowing it's not as bad as it could be. Just waiting for my first post surgery test.

I'm still glad I got the scan, never was offered a CT scan. I paid for it, high deductible HSA.
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP by Dr Sejal Quale Durango CO, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples
4+4 with tertiary 5
Invasion of left Seminal vesicle
9 lymph nodes taken all negative
Tumor staging pT3b NO MX


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4188
   Posted 3/30/2010 5:52 PM (GMT -6)   
142 and Daveshan,
Please reread the 1st paragraph of Dr Strums message. The part about bone scans giving a patient false
sense that all is well. Basically unless your psa was sky high, the reality is that you know no more now than before the scans were done. The partin tables would have told you more than the scans did.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/31/2010 5:10 AM (GMT -6)   
Although verbally we all love hearing 'your scans are clear', I loved hearing that too, but like John also mentions, realize the significance or lack thereof about the whole thing. The nomograms and Partin tables were telling me I should glow in the dark with PCa, but the two scans appear clear, Dr. Menon refused to do surgery on me..as he knew it would be done for nothing (except making a buck for the doc), I saw other uro/surgeons whom wanted to do the proceedure on me. Great that I got like 8 opinions that included: oncologists, radiologists, surgeons and few of each of those. I even have the actual film x-rays of the scans here at home (copies), so if down the road, may need possible comparisons if bone pains or mets sets in...would be maybe even obvious to an untrained eye to acknowledge the changes.

I wish more docs were honest enough to tell people the limitations of the scans and therefore on their treatment and possible prognosis's, basically it is a rip off and we are lead to believe it is all good and wonderful. I am extremely pleased to see someone like Dr. Strum take a stand, against the grain and even have darts thrown by radiologists likely coming his way, to speak up for us patients to the medical world and tell it like it is. There are other docs out there that can and do tell it straight, but not enough of them from what I have seen. I am going to mention there are other examples like this kind of stuff....truth trumps all. (FDA-?)
Youth is wasted on the Young-(W.C. Fields)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2211
   Posted 3/31/2010 5:55 AM (GMT -6)   
Emperor's new clothes syndrome as it were.

Few are prepared to stand up and say that the fancy equipment doesn't actually do what others are saying it does.

And it does sound very like a legal parachute too: "yes your honour. we did all we could, we performed all the available tests."

As I've mentioned in a few posts in the last week or so, my team have told me that there is no test or scan that would reveal where the cancerous cells are in my present situation.

The CT scan I'm scheduled for in two weeks is only to map out my internal anatomy to help aim the RT accurately.

It's been strange to feel relieved from the outset to have been told I had cancer rather than to have been given the all clear as I would have been convinced that an all-clear was a false result.

Alfred
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