POST January/February 2015

ens, but they are not held accountable for
overtreating. That might be one reason why
observation is not something that patients
are usually offered as a stand-alone treatment
paradigm (without drugs), Kenneally says.
The urology oncologist behind the indolent
tumor trial at Cleveland Clinic, Brian Rini
M.D., says only 5 percent to 10 percent of the
patients he sees qualified for observation without
treatment. Some of the approximately 50
patients enrolled in the trial needed treatment
within three to six months of observation. Of
the original 50, there are between 15 percent
to 20 percent, Kenneally says, who still do not
require treatment they otherwise would have
received. Kenneally is one of them.
“There’s not a lot of data out there, which
is why we did the study,” Rini says. Most of
the patients in the study were eager to delay
treatment or avoid it altogether, Rini adds. In
Fung’s experience, however, most patients immediately
want to pursue the most aggressive
lesions that are unlikely to cause harm if left
untreated. The study’s authors say that precursors
of cancer should not have the term ‘cancer’
attached to them; screening guidelines also
should be changed to lower the detection of
inconsequential cancers and low-risk IDLEs.
While Rini thinks there will be little to be
gained from a change in terminology, Fung
believes it is a wise, albeit monumental, shift.
“We really understand that indolent lesions
are most likely not going to cause any
problems in the near future or during the
patient’s lifetime. I think there’s a justifiable
reason (to change terminology) because I think
hearing the word ‘cancer’ really gets the patients,
I mean, instills a lot of fears in them—
Connie Kenneally,
local entrepreneur
and cancer survivor
“One of my friends
said, ‘For once, can’t
you just do what
you’re told?’”
treatment available.
“When we think about the word cancer, it
really scares not just the patients but actually
physicians, and that drives some of their fears
and overtreatment,” Fung says.
A cancer diagnosis has an emotional
impact on patients, their family, and friends.
Even aside from overtreatment, the mere word
‘cancer’ produces a degree of anxiety, fear, and
depression. There are other effects as well.
“No matter how minor the cancer, that
person all of a sudden, with the label of being
a cancer patient, is going to miss work more
often and have many more health issues just
because of the label,” Brawley says.
Now, however, there is a movement under
way to change diagnostic terminology so that
indolent lesions no longer are called cancer.
The goal of the change is to limit some of the
fear that pushes people to pursue unnecessary
treatment.
The Lancet study in May proposed the
term “indolent lesion of epithelial origin,” or
IDLE, to replace the word cancer for those
even for physicians,” Fung says. “They feel
like they have to treat the patients right now.
We have to cut (the cancer) out even though
there might not even be any survival benefit,
and may actually cause more harm and side
effects.”
Such a paradigm shift will involve a lot of
levels of the medical establishment, Fung says,
and will require a long nationwide rollout.
Still, he says, it is necessary. A growing number
of physicians, scientists and other advocates of
diagnostic reform agree.
In March 2012, the National Cancer Institute
convened a panel of experts to evaluate
the problem of cancer overdiagnosis, which
NCI describes as the process of detecting and
treating harmless tumors as if they were harmful,
sometimes leading to patients’ death or to
long-term injury. The panel is seeking methods
to help distinguish between the deadliest and
most harmless cancers for more tailored treatments.
To reach this point, advocates propose
that patients with cancer that is of low or uncertain
risk enroll in observational registries,
not unlike the observational study Kenneally
found.
Perhaps most important, the widespread
belief that repeated screenings deliver better
outcomes needs to be changed. Diagnostic
testing also needs to be limited, reform
advocates note. New models of how cancer
progresses must also be developed. But to do
this, a better understanding of the microenvironment
and genetics of tumors is needed to
better predict their development.
Our whole understanding of cancer, Brawley
says, has to be updated to include genetics
and genomics.
“(The new definition) will take into account
not just morphology, or what it looks
like under a microscope, but genetics, which is
one gene, and genomics, which is how a bunch
of genes interact with each other,” Brawley
explains.
There are 5-millimeter tumors, where the
genes inside program it in such a way so that
it will never grow or spread, and it will never
kill, Brawley says. There are other 5-millimeter
tumors with genetics that will make the tumor
progress, spread and kill. The one that doesn’t
spread is the overdiagnosed cancer we don’t
36 POST | Issue 9 January / February 2015
John Myers