YANA - YOU ARE NOT ALONE NOW
PROSTATE CANCER SUPPORT SITE
SURVIVOR STORIES :
DISCUSSION FORUM :
WIVES & PARTNERS :
TELL YOUR STORY :
UPDATE YOUR STORY :
YANA HOME PAGE :
DON'T PANIC :
GOOD NEWS! :
TREATMENT CHOICES :
ABOUT US :
#10 - GO TO INDEX FOR EARLIER LETTERS
men need enlightening, not frightening
27 , 2012 |
darned PIVOT study
doubt most people reading this E-letter will have seen some of the many articles
generated by the publishing of the PIVOT study data. Some of the pieces were reasonable,
some a little hysterical, but few were particularly helpful. As ever, I found
Mike Scott's comments on The "New" Prostate Cancer Infolink to be more balanced.
He wrote two pieces that I think are worth reading - Full publication of the results of the PIVOT study
and Further comment on the final results of the PIVOT
No doubt we will all take what we want to from this study. My
take is a simple one:
In the study roughly half (48%) the men died during
the period of the study. About 7% died from prostate cancer. It is always sad
to read of the passsing of our men from prostate cancer - there are two such deaths
reported this month, but is there any better demonstration of why we should not
be so obsessive about dying from the disease with which we have been diagnosed?
We're far more likely to die of something else
As Willet Whitmore said:
"Growing old is invariably fatal while prostate cancer is only sometimes so."
time I looked at the US statistics there were more male deaths from accidents
than from prostate cancer. How many of you wake up each morning and say "Gee,
I hope I don't die in an accident today."?
time to time I receive mail saying that I am too hard on the doctors. I try not
to be because I believe that most of them are doing their best in trying to help
us. I don't think that most doctors, as individuals, are bad or incompetent people.
But I do think that the paradigm in which they operate may preclude them from
dealing with their patients as people, not a collection of symptoms. It also makes
them extremely conservative and somewhat closed to anything new.
admit to some frustration when I read the advice that some of the men I meet on
Yana or the Internet say they received. I emphasise the word say
because communication is often difficult, especially when on the one side we have
a doctor using terms with which he is familiar, but with which his patient may
not be, and on the other we have someone who is desperately worried about what
they are being told. That is the reason we recommend that there are two people
at all consultations and, if the doctor agrees, that any consultation should be
taped. That gives the man and his companion time to try and figure out exactly
what was said.
BUT........having said that how true are these statements?
must take charge of your treatment as the doctor has a different agenda than you
Dr Charles 'Snuffy' Myers
Unfortunately, we appear to be
living in a time when physician income is more important than patient outcome.
Doctors know more about Medicine than non-doctors, and
that's why patients seek their assistance. But they all have their bias.
This interesting piece, which I came across while
looking for something else, gives an insight into the question of what our doctors
tell us and when Of truth, partial truth, and outright lying to
Coulter announced at the end of last month that their non-invasive Prostate Health
Index (phi) test had received preliminary approval from the U.S. Food and
Drug Administration (FDA). They claim that which they claim provides better prostate
cancer detection and lowers healthcare costs. The approval allows the test to
be used by licensed laboratories only at this stage.
That was also the
position with another "new" test - the PCA3 - which coincidentally received
final FDA approval earlier in the month after two years on the preliminary approval
How good are these tests? Can they be used instead of the standard
PSA tests? It is difficult to answer those questions because both tests use PSA
number in calculating their outcomes and thus import the variability and uncertainty
of standard PSA tests. When trying to evaluate the efficacy of the various aspects
of diagnosis and treatment in the PCA world we are told that we should be guided
by studies, but neither of these tests has been used in straight comparative studies
against the standard PSA test in a diagnostic setting.
PCA3 is a gene which,
so it is claimed that is only expressed in human prostate tissue, as was the original
claim for PSA, and which it is claimed is highly over-expressed in prostate cancer.
The PCA3 test uses the man's urine. Prior to the urine sample being taken the
prostate gland must be "vigorously massaged" to ensure that sufficient
PCA3 mRNA and PSA mRNA are released. Urine samples are then processed and tested
to quantify the relative concentrations of these genes and the result is calculated
using this formula: (mRNA PCA3) / (mRNA PSA) x 1000. It is difficult to understand
how consistent PCA3 scores can be developed, given the difficulty in having a
standard degree of vigor in the massage process.
The new phi test
also depends on what is termed a PSA precursor protein known as [-2]pro-PSA or
p2PSA. The formula for calculating a phi score is phi = p2PSA/fPSA
* square root PSA. Manipulating two variable results - and PSA results have a
wide range of accuracy - is unlikely to produce a consistent outcome.
of these tests seem to offer any meaningful assistance in the main issue in deciding
on a choice of therapy - the difference between clinically significant prostate
cancer that needs treatment and prostate cancer that can simply be monitored under
men - updates
Montejano mailed me recently about her father Amador Montejano who passed on in October
last year. She says she is grateful for all the help he received from the Yana
people. I thank you too.
Diane Armstrong also mailed to say that her husband
Bruce Armstrong had passed away in August
last year. Our thoughts are with her too.
Hank Hancock posted a very pertinent update
about the way in which his PSA has behaved after surgery.
Frank Streiff - another YANA man with a very
high PSA of 5,000 ng/ml after failed surgery, radiation and hormone therapy but
still managing to get a bit of fishing done.
Parsons' Pathology 101
Parsons was 51 when he was diagnosed in March 2002. His initial PSA was
46 ng/ml and his Gleason Score was 9. His journey has taken many twists and turns
as he has kicked and bucked against the way some of his medical practitioners
treated him and his diagnosis.
Always curious about this complex disease,
in early 2011 he managed to view his original pathology slides and get copies
of them from a friendly pathologist. Here he shares what he has learned. I posted
the piece on the Yana site, linked from his story and came across it during our
'spring cleaning' of the site.
It is well worth reading and gaining some
small understandin of what pathology slides look like. It is here BOB PARSONS'