Our
office often receives calls asking for a source of balanced
information about the treatment options for early
prostate cancer. It has always been a stumper. Our usual
recommendation is the National Cancer Institute's treatment
summaries (www.cancer.gov), but this is a disappointing
source of information where it concerns prostate cancer.
Unlike other cancers, this one might be just as well left
undetected and untreated (more on that later), and it
is hard to find anything that gives a balanced view of
all options, including no treatment. In fact, we have
yet to find one.
That's
why we were interested in a new survey of “Patient Education
Materials about the Treatment of Early Prostate Cancer,”
published last month in Annals of Internal Medicine. 546
consumer pamphlets and Web sites were surveyed and given
scores based on these two crucial questions: Are all the
options presented? Are the potential harms as well as
potential benefits presented? Professional organizations,
medical centers, and drug companies were among the publishers
of the educational materials in this survey.
What
makes early-stage prostate cancer such a good test of
an information source's honesty is the fact that no head-to-head
comparison study of all three treatment options has ever
been conducted, though radical prostatectomy has long
been the common treatment. For what other cancer would
a prospective patient face the choice of having an organ
removed, irradiated, or left alone unless symptoms develop
(watchful waiting)—all of which are equal in terms of
survival?
So
when this patient education materials survey was published
last month, we were ready to champion the top choices
in this newsletter and add a link within our Web site
to those with the high scores. The first stop was the
Web site of the medical division of the University of
Toronto (www.library.utoronto.ca/medicine/prostate).
After
multiple failed attempts to get through and no response
from the site's Web master, it was on to the next high
scorer, the Web site of Memorial Sloan-Kettering Cancer
Center, which describes itself on the local public radio
station as providing, “The best cancer care anywhere.”
This
Web site's information amounts to a sales pitch for certain
radiation and surgical techniques pioneered by doctors
at Memorial Sloan-Kettering Cancer Center. Don't expect
a full explanation for why watchful waiting might be worth
considering. This option merits only five sentences. The
American Cancer Society wasn't any more forthcoming on
watchful waiting, providing exactly the same minimal amount
of space.
How
did these Web sites score so high? That question merited
a return to the statements written by Angela Fagerlin
, PhD, of the University of Michigan, and colleagues after
completing their survey:
All
sites reviewed were accurate, but some erred by omission,
most typically de-emphasizing side effects of therapy.
Several sites presented so little of the key content that
they generated somewhat misleading impressions.
And
this about the printed materials:
No
print education materials we evaluated had clinically
significant misstatements, although some references were
out of date because of the publication date. We found
only one case of clinical significant imbalance in the
treatment descriptions. However, a general bias was toward
active treatment that minimized the role of watchful waiting.
In addition, the likelihood and impact of side effects
were minimized [emphasis ours].
What
is really needed here is not just a balanced view of treatments,
but an honest view of prostate cancer. Men die of prostate
cancer. A small percentage of all prostate cancers are
aggressive, and rapidly fatal no matter how early they
are detected and treated. The majority, however, are so
slow growing that they will never become life threatening
or produce symptoms. In between, there may be
a small proportion of men with a type of prostate cancer
that could benefit from early detection and immediate
treatment. An ongoing clinical trial is pursuing the question
of whether early detection of prostate cancer is lifesaving.
Though men will be told their PSA and Gleason scores,
no test can determine accurately which prostate cancers
will become aggressive and which will remain dormant.
As
this survey shows, treatment-related harms are usually
left out of the information given to patients. Since the
choice of watchful waiting is counterintuitive to most
people, it deserves a clear and lengthy explanation. After
all, hasn't the early-detection-saves-lives message been
drummed into the public's consciousness for years?
There
is a reasonable amount of preliminary research to suggest
that men should give serious thought to avoiding a PSA
test for prostate cancer because it is unclear whether
early treatment is lifesaving. For example, a Swedish
study, which had randomly assigned men to watchful waiting
or radical prostate surgery, showed that the men who underwent
surgery did not live longer than those who did not. After
six years, there were 4% fewer prostate cancer deaths
among the surgically treated men. That benefit, however,
was canceled by the fact that their quality of life was
worse (incontinence and impotence are treatment complications)
and their 4% higher rate of deaths from other causes.
Several
studies monitored untreated men with favorable results,
for example, one followed Swedish men who were not treated
unless symptoms developed. At 15 years, those whose cancers
appeared to be confined to the prostate at diagnosis had
a prostate cancer death rate of 11%. In the U.S., men
treated with a radical prostatectomy for early-stage disease
have a similar mortality rate. Don't expect to hear about
these studies from your average urologic surgeon. And
there is no financial incentive for a medical center's
Web site to provide a balanced description of watchful
waiting.
What
you can do:
-
Send for the free pamphlet that got the best score in
the print material category by calling the National Cancer
Institute (NCI) hotline, 1(800) 4-CANCER. Ask for “Understanding
Treatment Choices for Prostate Cancer.” The same pamphlet
can be read at the NCI Web site (www.cancer.gov/prostate).
It includes a survey of prostate cancer patients' experiences
with treatment-related complications, such as incontinence
and impotence.
-
Talk over the options with a knowledgeable primary care
physician. When getting a second opinion about treatment,
recommendations will correspond to the bias of the specialist.
Not surprisingly, urologic surgeons advise surgery and
radiation oncologists recommend radiation therapy. As
with the information sources in this survey, a test of
a primary care doctor's knowledge would be his or her
opinion of watchful waiting.
-
Do not have a PSA screening blood test for prostate cancer
without informing yourself beforehand. Read the new book
entitled Should I be Tested for Cancer? Maybe not
and here's why (Berkeley: University of California
Press) by H. Gilbert Welch, MD.
Maryann
Napoli, June 2004
