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Jewish World Review May 6, 2005 / 27 Nisan, 5765 Children With Brain Tumors Don't March By Drs. Michael A. Glueck & Robert J. Cihak
http://www.JewishWorldReview.com |
I am a diagnostic radiologist. I am a physician whose role as a specialist
is that of the doctor's doctor. And contrary to what some may think of
doctors, I am a living, breathing, cardiac-beating and crimson-bleeding
human being.
In the past two weeks I have learned of serious illness involving the child
and grandchild of two of my closest friends, unnervingly both diagnostic
radiologists. One is a writer. The other a distinguished professor who
played a significant part in the training of both my writer friend and
myself.
Both of these children have benign brain tumors diagnosed in radiology.
My radiological peers, with the assistance of science, technology, X-rays,
electrons, protons, gamma rays, magnetism, supercomputers and a myriad of
scanners, can look virtually anywhere. Are these experts who in addition
often super-specialize in one of a couple dozen subspecialties of radiology
really all-knowing? Does their knowledge make them immune, impervious and
impenetrable to disease? Are they better able to deal with the treachery,
tricks and turmoil of Mother Nature? Are they and their children exempt
from the despair of disease?
A few say yes because their familiarity with the inner workings of the
complex system makes it easier to cope. They know who to call and what to
expect.
But most say no, as their knowledge only makes them aware of what comes
next and the many things that can go wrong. Comments one physician, "No
matter how much you know, the heaviness in the heart and chest remains."
Notes the Brain Surgery Information Center's Web site: "The world of
childhood brain tumors has no welcome sign leading into it. No matter what
anyone says to minimize the situation, this statement is one of the most
painful sentences a human can hear. The combination of fear, shock, and pain is
much to bear."
Each year over 185,000 people in the United States will be diagnosed with a
primary or metastatic brain tumor. Brain tumors are the leading cause of
cancer death in children under age 20, now surpassing acute lymphoblastic
leukemia. In the United States the overall incidence of primary brain
tumors is more than 11 per 100,000 people. Children have roughly half of
these tumors. It is also shocking to learn that approximately 21 percent of
children's brain tumors are considered "benign."
Brain tumors in children are different from those in adults and are often
treated differently. In addition, due to either the effects of the tumor or
the treatment required to control it, survivors of childhood brain tumors
often have severe neurologic, neurocognitive and psychosocial conditions.
Benign brain tumors, those that don't metastasize, harm by mass affect
(pressure within a rigid bony skull), interference with normal function,
and partial obstruction or complete blockage of cerebrospinal fluid flow.
Pediatric brain tumors most frequently come from "young" cells. These are
cells that are still developing ("immature" or "primitive" cells) and have
not reached full maturity. For every normal brain cell type, there is a
corresponding tumor that can arise from it.
There are other tumors that come from non-brain origins, such as teratomas,
meningiomas, skull bone tumors, and blood vessel tumors.
Children also have unusual tumors of the developing brainstem, hypothalamus
and optic nerves (juvenile pilocytic astrocytomas and teratomas).
One of the children mentioned above has a meningioma. The other has a
juvenile pilocytic astrocytoma.
Samantha, age 4 (3 at diagnosis), with reddish-brown hair and dark brown
eyes, now weighs 32 pounds. She is the grandchild with the juvenile
pilocystic astrocytoma. Samantha's bottom line is that an estimated 70
percent of patients with this diagnosis will survive 10 years, with many
potential quality-of-life issues among those survivors.
There are now an estimated 267,000 people with "benign" brain tumors, which
translates to 267,000 heartbroken families. So why is there so little
research support and media coverage for these tumors? For economic and
other reasons these are not today's politically correct diseases.
Unlike patients with breast, ovarian and prostate cancer or AIDS, little
children with benign brain tumors are unable to rally, march, demonstrate,
swing large posters or lobby Congress. There are no 3-year-old high-profile
celebrities with the disease. For reasons of politics and sex, little kids
get the short end of the stick.
People need to understand why research for children's benign brain tumors
is so under-funded and how the suffering and effects of treatment for a
benign tumor may be just as great for the child and the family as for a
malignant tumor.
And perhaps we should coin a new term, "orphan diagnosis," for an illness
or disease that is not currently in vogue and therefore does not get the
research funding or respect it deserves.
Samantha's grandmother notes, "We are riding l5 of the 25 miles and then
volunteering in the Brain Tumor Society's 'National Ride for Research' Bike
Ride on May 15." They hope that you can join them personally or spiritually
in this journey for their children and yours.
The Brain Tumor Society is a national advocacy organization for brain
tumors. Its Web site is www.tbts.org and its phone number is 800-770-8287.
So in sum, does being a physician make it easier to deal with a bad
diagnosis in our own families or those of friends? Probably not but it
should help us empathize and sympathize with patients and families and thus
make us better doctors.
Editor's Note: This week's commentary is written by Michael Arnold Glueck,M.D.
Every weekday JewishWorldReview.com publishes what many in in the media and Washington consider "must-reading". Sign up for the daily JWR update. It's free. Just click here.
Michael Arnold Glueck, M.D., is a multiple award winning writer who comments on medical-legal issues. Robert J. Cihak, M.D., is a Discovery Institute Senior Fellow and a past president of the Association of American Physicians and Surgeons. Both JWR contributors are Harvard trained diagnostic radiologists. Comment by clicking here. © 2005, |
Mitch Albom | |||||||||||
