Doctors and Referrals

I recently had a question asked of me and I answered. I thought perhaps the answer may be of interest to others.

QUESTION:
Why doesn't an oncologist or other treater have an ethical obligation to make people aware of other trials and treatments that are available outside of their own facility? For example, when I asked about Satraplatin, I am simply told it is not available. It may not make a difference to us, but I think that information might be invaluable to other people at prior stages in this relentless disease.


ANSWER:
Primarily it is money. The Universities are paid on a per patient basis when they enter them into trials. They are paid either by the drug company or the NCI or other Federal and sometimes States. The money goes to keep the departments running (and the doctors paid). No trials - no money - simple as that.

However many University doctors (usually very senior doctors who have earned the right to be more independent) will advise about other trials at other Universities where they think it might be useful. And there is information on the Internet about the availability of trials across the United States.

The other interesting little known fact is that the Universities doing the trials will pay the non-university referring doctor a set amount to refer a patient to a trial. I know $2000 has been paid to Urologists for that referral. I do not know the complete range of the payment. Of course this payment is never disclosed to the patient from the Urologist of the people running the trial. One of the interesting side issues of this practice is having a great University and its medical school in your back yard but the local Urologist refers patients to a lessor one maybe 400 miles away because the far away University pays a finders fee or a higher finders fee than the local University.

Also this money becomes important referring patients within the University. For example if you are seeing a Urologist in a University setting he may refer you to a Radiation Oncologist, Medical Oncologist, etc., within the University. It is assumed by the Doctor/professors involved that these are the top of the line doctors. This is simply not true. The referring of doctors only within the University is an unwritten rule. If you want to stay employed there and have peace with your fellow Professors - you better feed them.

We do see great surgeons and some other fields in Universities but the run of the mill doctor in the university may or may not be (and frequently are not) the best in the business. This is why we talk about individual "Doctors of Excellence" and not treatment centers. A well know treatment center may be well know because of the politics involved or simply because they treat all disease with various levels of expertise. And that expertise is usually not prostate cancer. One should be able to pick their center based on the results of that center in the disease that you have and the particular doctor that has the most expertise. Many know who the "best" doctors are in any particular field but it is almost impossible for a lay person to find that information and, therefore, he relies on this primary doctor for referrals - perhaps a bad thing to do.

There is very little that goes on in the Medical industry that does not involve the exchange of money in some way. the old "follow the money" is as important here as it is elsewhere. The "old boy network" is extremely strong here and if you want to play you better bring in the money.

It is often said as a Professor you must "publish or perish". It really means "produce money or perish". This production of money is also involved with getting donations, outside of the trials, for Chairs, new equipment, new buildings, etc. You could be the greatest in the world but if you don't produce income from trials, etc - you will not be there long. It is a requirement (maybe unwritten but well understood) in these institutions.

I have asked for years to bring the trials down to the level of the just diagnosed. There is little being done on this even today. Why do we not attack this disease with things that we use in advanced or end stage disease to see if these protocols may be successful at the beginning stage. Again it may well be money. When the drug companies are making huge sums of money off of end stage disease - do they really want to fund trials that may cut off the sources for these end stage medications. Imagine if you will if we could cure all prostate cancer (and other cancers) at the front end - how much money would be lost at the back end of this disease.

I think the other thing we overlook is that Universities are really large corporations no different than the large corporations that we have seen do wrong things in any industry. I have seen similar things within the Universities - it just does not make the news - or if it does it is on the back page.

If you don't believe me look at the thousands and thousands of patients are killed in hospitals because of wrong diagnosis, wrong medications, infections, on and on. These come up occasionally in the newspaper - but little seems to ever get done. If we had something else out there killing these thousands - all hell would break loose. We have had some 3000+ over 4 years of our young men killed in Iraq and the population is up in arms. Yet me kill more than this on a monthly basis in hospitals across this country and nothing is said. To me there is little difference in killing on the battlefield and killing by the medical profession. Both should be given equal time and both could be prevented.

OK, enough of my soapbox.

Why treating prostate cancer is a guessing game.

I think that most failures of conventional treatments with a Gleason 3+3=6 is due to the mis-reading of the Gleason score or other diagnostic items. It is my belief that if we had a true 3+3 and nothing else, no 4 or 5, no spread, nodes not involved, no extra capsular penetration, no margins (in surgery), small volume of tumor - at the hands of an "expert" the person is 100% curable.

Every failure may the fault of mis-diagnosis or unknowns.

PSA is a very unreliable gage of the cancer at the time of early diagnosis. The higher the Gleason the lower the PSA. For example we can have a Gleason score of 8, 9 or 10 and have a PSA of 1 or so. On the other hand we could have a PSA of 10 or so with a Gleason of 3+3=6.

We look at doubling time of PSA as being an important findings. However with a Gleason score of 8, 9 or 10 and a low PSA - the doubling time may be very long. With a Gleason 3+3=6 the doubling time can be short or long.

Why the difference - the difference may be in the tertiary grade. For example if we had a high Gleason (8, 9 or 10) and no tertiary grade we would always have a low PSA and probably a low doubling time. In addition there are places in the Gland that cannot be reached by our normal needle biopsy. These could have lots of tumor of high grades and we don't even know it.

If any gland had any Gleason grade 3 in it (regardless of reported grades) than we could have a higher PSA and a higher doubling time.

Two more important variables:
1. The volume of the tumor could make a large difference and what is the grade of that volume. One could have a 3+3=6 with a very small spot and a 3+3=6 where their is a lot of cancer. Two different diagnosis with two different treatment considerations.

2. Prostate cancer has many different cell variations. We know that some cell types will respond differently to different treatments (this is never taken into consideration by the doctors in their diagnosis - there is no lab tests that are commonly used to show this. I believe the cell types would apply to different Gleason Grades and perhaps different growth patterns and different production of PSA. There may be 30 or more different types. And there is no known attempt to type cells and study the differences.

The doctor only works with the known diagnostic information and makes decisions, based on studies, of these known findings. If there is no higher Grades reported, if there is no reported volume of all grades, if there is no known "variants" (see http://www.cancer.prostate-help.org/capathl.htm), etc., etc. etc. he is very limited in recommending treatments based on studies.

Any study based on the initial diagnosis is short of diagnostic information and is only as reliable as the doctor or doctors who report the findings. If you show a sample of gland tissue to 10 different pathologist you would get many opinions and readings. If you send the same blood to many different labs you would get many different readings. And these differences could all be significant.

Now when you consider that a CT scan is worthless unless there is massive tumors growing elsewhere in the body. Then you consider there may well be bone tumors (prostate cancer of the bone) that are yet too small to be seen with our present procedures. One may well have a spread of the disease that can not be seen or diagnosed with any reliability. In these procedures the only thing you know when they report negative findings is simply that they did not see any - not that it wasn't there.

With the guessing game we have - you see why I believe that prostate cancer should always be treated with more than one modality of treatment.

We simply don't know with our present diagnostic procedures how really sick a man might be with this disease and why sometimes a man is only diagnosed when he experiences a high level of bone pain - and then it is too late.