| Prostate
men need enlightening, not frightening | April
2013 |
Is
Humor Always The Best Medicine? There
seems to be general agreement that laughter, like exercise, is good for us. Both
release endorphins, the body's natural feel-good chemicals. These help to fight
depression and, it seems, can help the immune system in its work. It was with
this in mind that we decided to include a humorous page on the YANA site. It was
named by Mac, a Vietnam Marine vet who said we were all members of The Royal Order
of Prostate Cancer or Troop-C. He wrote what is still one of my favourites - the
Cockroach Analogy . The Late Robert Young
also included some humorous pieces that I liked on his Phoenix 5 Website, while
long time survivor George Hardy t ook a different line and set
up his somewhat bawdy Bollocks to PCa forum. (for USA English speakers
the equivalent to his title might be Give PCa The Bird)
But a recent piece
in the media made me wonder if the Troop-C page, meant to give some wry and humorous
looks at prostate cancer and raise a laugh or two was such a good idea after all.
Every year around this time there is an International Comedy Festival in Melbourne
and every year one of the comedians will overstep the mark and come up with a
humorous joke or sketch that is said to be offensive. Of course the media will
make a meal of the gaffe - it is never too difficult to find someone who will
be "outraged" by the material and the game will be on. Censorship, the
right to free speech, breach of anti-vilification laws all come to the fore.
The
specific question raised in the article I mentioned was if and when it was appropriate
to joke about medical conditions - and why people did this. Could this type of
humor perhaps be counterproductive if it upset people instead of making them laugh?
The
first time that Robert Young saw any humor in his situation was when he laughed
at the concept of a Lifetime Guarantee when he thought he only had months to live
- not much value in that guarantee then. Jerry, another PCa man from those days
smoked like a chimney. When he was outside a convention venue taking in his nicotine,
one of the doctors he knew berated him for such a dangerous action and said it
would shorten his life."At least it will cure my cancer," was the quick-fire
response. I've used that tack myself, saying that I almost cured my prostate cancer
some years back when I was hospitalized over a heart failure episode.
And
recently, a FB Friend posted a riddle along similar lines, which I considered
putting on the Troop-C page:
"Why did the man with prostate cancer
cross the road?"
"In the hopes that he'd be hit by a Mack truck."
Was
that going too far? Was that an example of something that might offend more than
it amused? I decided not to put it up as a joke on the site but instead to use
it as what may, if successful, be the first of the Swedish Crash Dummy video clips.
Incidentally,
the conclusion of the article I refer to was that on balance folk with a medical
condition were less likely to be upset by jokes about their circumstances than
people who did not have the condition. And the reason that they did kid others
in the same position was that it was a form of bonding along the lines of "We're
all in the same boat, and we may as well have a bit of a laugh from time to time.
It beats crying." I think I'll keep Troop-C - if you have any additions,
send them in to me.
Experience
counts There
are five basic 'rules' listed on the Choosing A Treatment page. The last of the
five says:
Choose The Best Team: It may seem blindingly obvious,
but the skill and track record of the people chosen to advise, monitor and carry
out a procedure are the best predictors of a good result.........
The
importance of checking on the skill and track record of a surgeon is highlighted
in Salesmen in the Surgical Suite by Roni Caryn
Rabin, published March 25, 2013 in The New York Times. This reports the forthcoming
legal action arising from the very sad case of a man who passed on some time after
RALP (Robotic Assisted Laparoscopic Prostatectomy) using the da Vinci equipment.
Of course this is only a media report and the contents have not been tested in
court.
What is the likelihood that these allegations are correct? I think
there is a significant probability that is the case if only because of the way
the da Vinci machine was said to be approved by the Food and Drug Administration
This was under a controversial process called "premarket notification"
or Pre-Market Approval (PMA). This is often used to bring medical items to market
without the rigorous trials of safety and efficacy typically required of new drugs.
[This is the path being taken by the manufacturers of HIFU (High Intensity Focused Ultrasound)]
When devices are brought to market this way, the F.D.A. "...cannot require
training programs as a condition of clearance," said Synim Rivers, an agency
spokeswoman." So with nothing laid down by FDA it seems that purchasers
and manufacurers could set up training programs that suited them without necessarily
ensuring the safe use of the equipment, as these extracts imply:
"Before
allowing this type of market clearance, the agency twice asked .. for more information
about how doctors would be trained to use company equipment. They were provided
with .... details of a 70-item exam for surgeons and a three-day
hands-on training protocol." That may seem little enough for learning
how to use such a complex machine for a technically challeging surgery. But "By
2002, however, the company had revamped its training program, replacing the 70-item
exam with a 10-question online quiz and reducing the time spent in hands-on
training at their facility to one day."
The surgeon was
one of six doctors given free training by [the manufacturers] "including
one day of hands-on training ..... He also had done two practice runs on the
equipment with a more experienced surgeon.... "
"......sales
representatives were often in the operating rooms, where they offered advice to
newly trained surgeons who were having technical difficulties with the robot......"
Another
reason I think the allegations are likely to be found to have some truth in them
is because there has been evidence over the years that similar problems arose
when other equipment and therapies were first introduced. In the mid 90s prostate
cancer activist Don Cooley investigated the amount of training being provided
for brachytherapy. He used the term "Weekend Warriors" to describe the
two day seminars, using dummies, that were said to be the focus of one of the
manufacturers training program. Similar issues arose with HIFU equipment in one
of the countries where approval was given for use - the advertising suggested
that qualified nurses could be trained to use the equipment in less than a week.
No doubt other examples could be found, although the results of many legal actions
highlighting poor training are suppressed in out of court settlements.
As
I say, we don't know whether these allegations are correct or not. A number of
studies have shown that the using da Vinci equipment for RP (Radical Prostatectomy)
produces very similar outcomes to "open" surgery. BUT, these studies
generally are based on results reported by large institutions. These will have
protocols in place to ensure that the equipment is used by well qualified, well
trained surgeons. In passing it has been suggested that a minimum of 250 procedures
is required to gain proficiency - and that there should be regular use of the
machinery.
It is perfectly legitimate for a man considering any
of the available therapies to seek the answers to at least three questions:
1.
Will you personally be carrying out this procedure?
2. What experience
have you personally had with this procedure?
3. Do you keep records of
the outcome of the procedures you have carried out and can you share them with
me?
It may take a bit of courage to do this, but…….make sure you follow
this advice Think Carefully
"New"
Tests Before And After Diagnosis A
recent article in New York Times New Prostate Cancer Tests Could Reduce False Alarms
seems to have a headline and storyline that, as is so often the case, are somewhat
more than the facts reported. For example, taking some of the statements made:
Sophisticated
new prostate cancer tests are coming to market that might supplement the unreliable
P.S.A. test, potentially saving tens of thousands of men each year from unnecessary
biopsies, operations and radiation treatments.
More than a dozen companies
have introduced tests recently or are planning to do so in the near future.
Rather than looking at a single protein like P.S.A., which stands for prostate-specific
antigen, many of these tests use advanced techniques to measure multiple genes
or other so-called molecular markers.
Experts caution that it is too
early to tell how well most of the tests will perform and whether they will
make a difference. Although the tests are intended to help men make treatment
decisions, the onslaught of so many could cause more confusion.
There
is an accompanying chart summarising the some of the available tests at New Ways to Assess Prostate Cancer But very
few are really 'new ways' and many of them have a component of PSA and thus would
be subject to the same inconsistencies we know about that "unreliable" test.
Both
urine tests have a very small footnote that they "require a digital rectal
exam to push prostate cells into the urine." What the note does not say is
that the gland must be manipulated "vigorously", a notably unscientific term.
Another
article which illustrates some of the issues covered here and in recent E-Letters.
The headline Urine Biomarker Combo Predicts Prostate Cancer
and introduction of A combination of 2 urine-based genetic biomarkers predicts
prostate cancer better than either biomarker alone and better than the standard
serum prostate-specific antigen (PSA), according to a new study. sound so
very positive.
But Dr Klootz, quoted in the article, says "PCA3 looks
promising as a marker for diagnosis, but not as much for identifying the worst
patients. For TMPRSS2, the data are more limited, but could be promising."
"Looks promising" and "could be promising" are not very encouraging.
Mike
Scott is also less than enthusiastic at More data on accuracy of the PCA3 test in the real
world
|
Yana
update We
lost another of our members this month - Dennis Peterson. Our thoughts are with
his family.
I received a mail recently asking if it was possible to continue
what I had done in the past - to post on the Forum brief details of men who had
updated their stories. I explained that the numbers of updates received now made
that a substantial task, but suggested that he use the RSS button which
is in the top right hand corner of the pages including This facility is intended
to create an alert every time there is a change to the page so you will be alerted
to all updates.
Mark has put in many more hours on tasks which will barely
be visible to most folk. He upgraded A Primer on Prostate Cancer pages and
incorporated more appropriate links as he did with A Strange Place. It will be much easier
for everyone to navigate those pages now. So we owe Mark yet another a big Thank
You. |
Active
Surveillance An Option For Young Men I
received mail after writing the piece about whether young men have a more aggressive
form of the disease in E-Letter#15.This drew my attention
to a piece in The "New" Prostate Cancer Infolink about a study that dealt with
Active surveillance as a management strategy
for younger men with low-risk disease
The study referred to does
not provide us with definitive proof that active surveillance is the best management
strategy for all young men with low-risk disease, but the cautious conclusion
is that "Nearly half of young men with PSA screen-detected prostate cancer
are AS candidates but the overwhelming majority seek treatment. Considering that
many tumors show favorable pathology [after surgery], there is a possibility
that these patients may benefit from AS management." |
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