Vol. 2, No. 6

June 2003

Jerry Bylander, Editor  jerryby@texoma.net

FEATURE ARTICLES

The Managing Director's Column
To our members and friends:

Over the years our group and most of our speakers have encouraged you to share in your treatment and for you to choose whichever options you think are best.  I have discovered recently, and should have already known, that there are caveats to be observed with this approach.  First your doctor is part of a larger health care team, albeit a key part.  The team consists of primary care givers such as nurses, test technicians, and others.  Then there is your insurance company, his or her insurance company, the hospital administration - especially the business office - Medicare, the janitorial staff, and so on.

Back to the caveats.  Most doctors don't like second-guessing.  They take it as criticism of their expertise.  Many experts don't handle criticism well (I know - I don't).  There is a fine line here.  You are  the one who is primarily responsible for your health care, in cooperation with your doctor(s).  But, as Dr. Johnson has reminded us, medicine is not benign.  I recall a young, attractive gal bemoaning the outcome of her operation for throat cancer to a MDA psychiatrist.  She had lost her voice box and breathed through a hole in her neck.  I was listening since I was next in line to talk to the doctor.  I finally told the complainer, this is your life now, you must make good decisions and get on with it.  It will do no good to look back.  The moral is that the decisions you and your doctor work out can have life-changing as well as curative consequences.

Then too, the doctor does his diagnoses by eliminating all the things your complaints could arise from through tests.  All these tests carry greater and lesser risks as well as costs per test which are typically around $2000 each.  Two recent examples: a big pharmaceutical firm just admitted that its leading antidepressant causes heightened suicidal thinking (if you can read "lawyer" this means a great many who take their pill kill themselves), and a medical appliance company has admitted that their descending aorta patcher fails 1/3 of the time and must be broken up inside the patient to be retrieved.  Now, whoever is using or prescribing these things must be aware of the consequences and side effects.  And, for whatever reason, may not be willing to tell you.

Therefore, if you don't want the test, and the doctor insists, you may refuse.  But try to be careful and not lose your doctor for not following his or her advice.  Why should he or she help you if you won't cooperate?  But remember, you started out working together.  This conflict is part of the dilemma of the new doctor-patient relationship.  Finding a new doctor can also be a problem since the number of doctors who accept Medicare is lessening as a part of our dysfunctional medical system.

We often hope we can find dangerous side effects from a diagnostic test by looking for them on the Internet.  But not always.  It turns out that I am sometimes allergic to iodine.  It turns out that the dye used in CAT scans is based on iodine as a contrast agent.  After experiencing an allergic reaction, taking Benadryl, and having some family drive to the hospital in downtown Houston to get me and leave my car behind, I looked on the Internet.  No mention of any allergic reactions.  I well remember the nurses remark in the recovery area, "some patients die - at least you are OK".

My wife recently had a heart catheterization, and I checked with my doctor/cousin ahead of time.  He said the only problem is the amount of dye.  When I mentioned the dye to the doctor here, he said we are aware of the dye problem and limit the amount.

Next, most doctors work for fee for service, and are not on salary like the rest of the medical establishment is.  Note that it is a rule that the service provider is responsive to the payer.  If Medicare is the payer, you now have less say in a number of ways.  You should think this fact through and let the consequences also guide your decisions.

Some specialists are required by their insurance companies to have you referred by your primary care physician.  And in some cases, by the time the PC doc finishes all his tests, it may be too late for the specialist to diagnose your particular malady.  Perhaps you should refuse some of the tests and take them later.  Again there is a fine line.  If the symptoms include a life-threatening illness among the possibilities, you now have a judgement call.  And if your doctor's malpractice insurance is out of sight, he may not want to take the risk of you as patient without the tests.  If you and your doctor can't talk freely about these things, you may need to change providers.

Some good news about brachytherapy.  At the April American Urological Society meeting in Chicago, ten-year freedom from failure (FFF) results were given.  If your PSA was 10, 63% were FFF, and if it was less than 10, 86% were FFF.  Other results sorted by stage, risk, or HT/no HT were similar.
See you at our next meeting.

Dr. Jerry Bylander, Managing Director, USToo! Texoma

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Next Meeting


"To be determined"    

Date: Tuesday Evening, September 16, 2003
Location:  Wilson N. Jones North Campus Senior Center, south entrance, 3305  Calais Dr. or TMC to be determined

6:30 PM - Social & Coffee
7:00 PM - Program

Speaker:   To be announced

Program: To be announced
At the end of the program, we will take a few minutes to discuss prostate cancer treatments of interest to you based on members' experience who have had radiation, brachiotomy, or radical prostatectomies.

Speaker:  

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Last Meeting  "What is Cryotherapy and is it a Therapy for my Prostate Cancer?"
Date & Time: Tuesday, May 20,  2003, 7:00 PM
Place: Wilson N. Jones, North Campus
Attendance: approx. 10 attendees


Old Business

None.

New Business

 None.

Program:   "What is Cryotherapy and is it a Therapy for my Prostate Cancer?"

Ewing Cooley,  Arlington,  TX

Speaker:  Mr . Cooley  is a  prostate  cancer survivor who has  had  cryotherapy.

Program:  Mr. Cooley, who is a representative of Karren Barries cryotherapy group in Arlington, TXm, described how cryotherapy is performed.  It is much like brachytherapy in the localized introduction of probes to destroy the cancer and also it is accomplished in a few hours.  After the catheter is removed the patient is usually allowed to return to his home.  Mr. Cooley  reported an excellent outcome.

The meeting adjourned about 9 PM.

Henri Plunkett, Program Chair/by the Editor

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Other Important Events
The Surprise Challenge  The Fourth Annual "Move it For Dad" , benefit for prostate cancer awareness, Sat, October 4, 2003, Sun City Grand Surprise, AZ, $15 registration.  More info: www.sw-prostatecancer.com 

National Conference on Prostate Cancer 2003  Sponsors: US Too!, FCRE, Prostate Institute of America, Community Memorial Hospital, September 6-8, Hilton Burbank Airport and Convention Center, Burbank, CA.  Contact:  www.pcri.org.

Your organization's meetings listed here.  Contact the Editor at jerryby@texoma.net

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Editor's Notes

Random thoughts from your editor

Diet and Prostate Cancer
News you can use
Hormonal Therapy
Your PSA is high but no CaP is found
Help in understanding PSA doubling time

DIET AND PROSTATE CANCER

        While there are no hard facts about the perfect diet to beat the
        odds of getting prostate cancer, there are good clues.  American
        men who eats lots of red meat seem to be at an increased risk.
        However there is a new controversy, is it really the red meat or
        how it is prepared?  The problem when the meat is cooked well
        done it actually forms carcinogens.  The Canadian Inuit eat a lot
        of red meat in their diet (raw however) and has very low rate of
        pc.  Saudi Arabian men have diets rich in red meat and cook the
        meat and also have a low incidence rate of pc.  You can see there
        are a lot of unexplained somethings going on.  My thoughts are our
        cattle are fed growth hormones to increase their meat yield.  The
        meat the Intuits and Saudis eat does not contain these drugs.
        What does this mean?  No one can seem to pin down exactly what in
        our diet is promoting pc, however we know something is there.
        Facts prove that Chinese, Japanese, and Asian men have very
        little prostate cancer compared to Westerners.  However when
        these same men migrate to the United States and eat our diet
        their rate of incurring pc increases.  We know they eat very
        little red meat and dairy products before coming to the United
        States. This probably means American men need to moderate their
        diets especially in the red meat and dairy products.

        ...................................Henri Plunkett

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News You Can Use

You can find news you can use at the USToo! International website: http://www.ustoo.org.  Check it out for the latest references.

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HORMONAL THERAPY (Androgen deprivation therapy).                                        The basis 
The basis of of hormonal therapy in treating pc is the reduction of testosterone. 
Ideally the idea is to totally remove all forms of testosterone 
including dihydrotestosterone.  This therapy works well for most men with 
pc until the pc becomes refractory.  This situation occurs in most men 
on the therapy, but no doctor can seem to tell one when this will 
happen.  My studies and discussions with doctors state than when your PSA 
starts to rise when you are on an anti-androgen and a lh agonist, your 
cancer is becoming androgen independent.  This means the cancer can grow 
in an environment without its favorite fuel, testosterone, and obviously 
this is not good.  HOWEVER my research has concluded most men that are 
declared hormone refractory, really are not.  First of all unless your 
doctor is providing you with a testosterone blood level of 20 nanograms 
per milliliter or less, he probably is not giving this therapy a fair 
trial.  It appears it is impossible at this time to totally remove 100% 
of testosterone from the bloodstream by any means.  It is suggested a 99% 
might be achieved.  So what does this really mean?  Are there really 
cancer cells that need no testosterone to live or do they really just 
adapt to the small amount of testosterone that is available even if it 
is just a very small amount?  Remember the best success from hormonal 
therapy, would result from starting and anti-androgen first to prevent 
flare up, second to start an lh-agonist, third a dht blocker, and most 
important do blood work to make sure this therapy is giving a fair shake to 
work for you, as in the t-level being below 20.  Yes this treatment does 
achieve chemical castration.  I will post more news on how to deal with side 
effects and bone resorption of this therapy......................Henri 
Plunkett

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YOUR PSA IS HIGH, HOWEVER PROSTATE CANCER IS NOT FOUND?  
A simple overlooked tool in making decisions whether to rule out pc or
to do another biopsy is free psa.  Many doctors simply disregard this simple
and inexpensive blood test to make major decisions.  As anyone who attends 
prostate cancer support meeting should know, the way to beat this cancer is
early detection, I can not emphasize early detection enough.  We know that men with 
abnormalities in free psa have a higher risk for pc.  Remember to ask 
your physician for a free psa level and free psa percentage.  The lower 
the free psa percentage, the greater the risk for 
pc................................................Henri Plunkett

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HELP IN UNDERSTANDING PSA DOUBLING TIME  
PSA doubling time can be a significant early detection tool or notification 
that pc is present.  I will try to simplify this concept by giving an example. 
A man has his first psa at age 50, his psa is 0.8.  Eight years latter his psa 
has increased to 1.2.  A doctor would note this is very acceptable and in normal 
range.  However the man is concerned about the rise in psa and repeats 
the test in six months.  The psa is now 1.6, once again a doctor might 
say this is very well within normal limits of psa and no concern. 
HOWEVER my studies of pc demonstrate this man should be regarded as 
having pc until proven otherwise.  Here is how psa doubling time should 
be understood. It was eight years before his psa rose 4 points, then it 
rose 4 points again in just six months.  Typically pc has an average psa 
doubling time of four years at the time of diagnosis.  Unfortunately for 
this man the psa doubled in six months, this finding should initiate 
additional testing and close surveillance.  Our problem with some doctors
is that they can be bound to closely to absolute concepts of normal vs abnormal. 
Probably this man's situation would be viewed as within the normal limits and his 
window for early detection might be lost.......................Henri Plunkett

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Jerry Bylander - Newsletter Editor

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