Searching for Consensus
by Neal P. Levitan

The dictionary defines consensus as a "collective opinion" and "general
opinion or accord." My very first encounter with an irresolute opinion was
that of a Neurologist reading a CT scan in 1982, who diagnosed me as
having - either a stroke, dementia or a brain tumor. The diagnosis was
further refined after a week-long stay and many additional tests at the
Massachusetts General Hospital.
I was told I had a tumor in my left temporal lobe that appeared to be very
close to the speech center and right motor strip; it was probably a slow
growing astrocytoma or mixed glioma, and was probably infiltrating the
"good" brain cells with its characteristic octopus-like tentacles; thus the
risk of a bad surgical result outweighed potential benefits. The conclusion:
I had an inoperable brain tumor. A wait and observe approach was
recommended. Although I had tremendous faith and respect for my doctors, I
felt I had to take my own initiative to investigate my disease and to manage
my own health.

Thus began an extensive search for answers. With the help of a loving family
and supportive friends, I garnered the strength to seek additional opinions,
and to hopefully find the latest and best treatment modality. I quickly
realized that such a search was very idealistic: there was no collective
opinion or single new treatment. Rather, I encountered vast disagreement
about my disease and the proper course of action to defeat it. This was, at
first, very unnerving!

The myriad of treatment options suggested ranged from immediately starting
radiation therapy to having a biopsy to determine the exact pathology. One
doctor said that "the tumor was there to grow," and recommended immediate
partial resection rather than waiting until it became more infiltrative and
perhaps more aggressive. Another warned that a partial resection in and of
itself may make the remaining tumor more aggressive. Still others
recommended new (and in the mid 1980's, experimental) forms of radiosurgery,
and one doctor said that regardless of what action I took, I would not be
alive in five years.

I also struggled through numerous medical periodicals and research studies,
many of which had varied results and conclusions. This further confounded my
attempt to ascertain the primary treatment available for my disease.

With all of my research and through all of my meetings and conversations
with some of the most renowned neurologists and neurosurgeons in the
country, I could not find consensus. What was imparted to me during this
process was a wealth of information. With each new consult I learned more
about the disease and became better equipped to ask more informed questions.
Becoming well acquainted with the different schools of thought on my tumor
type, I came to view each new resource and the multitude of information
collected as part of a learning curve that would assist me in making the
most important decision of my life. While I could easily have been
frustrated by the lack of consensus, there was some benefit from all of the
disagreement in that I learned about the risks and potential benefits of
each treatment option. In the end it was this process that enabled me to
evaluate the treatment choice with which I would be most comfortable.

Regrettably, not everyone diagnosed with a brain tumor has the opportunity
of time; some are faced with life-and-death decisions which may be
ultimately made for them and not by them. For many patients, however, there
is some opportunity to learn more about the disease and varied treatment
options. The fact that different protocols are available may be regarded as
a positive factor; considering that apart from statistics that tend to
eclipse the individuality of a person and his illness, there really is no
way to guarantee how a particular treatment will affect an individual or his
disease.

The challenge of coping with the absence of consensus certainly can be
daunting. At first it can seem to pre-empt all hope for recovery. It may be
possible to mitigate this negative spiral by focusing on the management of
your situation, hopefully with the assistance of others that you are
comfortable with. First, it is critically important to maintain a positive
attitude and never dismiss the power of hope. Next, it is necessary to
secure as much information as possible from reliable sources, including
unbiased caregivers as well as patients and families who have knowledge and
experience with the same tumor classification. It is similarly important to
logically discuss and analyze all of the information obtained with family
and trusted friends.

The final step, and in my opinion the most crucial, should be accomplished
with a delicate balance of determination and respect. Challenge your
physicians to respond to the opinions of their colleagues as well as to your
own concerns, so that all of the issues are clear to you or someone you can
rely on. Only then will you be armed with the resources necessary to make a
decision in the absence of consensus.

Today, I am a seven year post-treatment survivor. Fortunately, for those
going through a similar experience to mine, the combination of specialized
organizations such as The Brain Tumor Society and the internet revolution
make it much easier to access information about treatment options, to locate
other patients with similar diseases, and to receive support and guidance,
than ever before. Such organizations exist to provide help and purvey hope.
Hope is an invaluable asset to us all in coping with illness, as well as
with the frustration of not being able to identify a single best treatment
option. And, hope becomes even more vital when affirmation as to the most
appropriate measures for managing your disease does not exist.

Neal P Levitan, Esq., is The Brain Tumor Society's Treasurer.
http://www.tbts.org/levitan.htm