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Copyright © 2003 by Jones and Bartlett Publishers, Inc.
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100 Questions &
Answers About Brain Tumors
uses a novel approach to transmit information to patients and their families
who seek understanding about myriad topics—from day-to-day living with a
brain tumor, to coping with treatment side effects, to talking to friends,
to changing priorities, and everything else in between. A patient’s comments
and stories are interspersed with the doctor’s explanations.
Patients, caregivers,
families and friends are guaranteed to learn from the answers and
commentaries found here. Also, the healthcare team treating brain tumor
patients will learn about those unasked questions that patients were afraid
to ask, or too embarrassed to ask, or forgot to ask during their hospital
stay or office visit.
During my fifteen years in the brain tumor community, I've witnessed an
evolution in our society's acceptance of individuals diagnosed with a brain
tumor. In the late 1980s, there was a reluctance to talk freely about it. A
brain tumor was more than a disease—it was a stigma. A brain tumor can
affect emotions, intellect, personality—the very essence of a person—and
people are frightened if they witness such changes, especially if they don’t
understand the cause. Location and histology of the tumor are determinant
factors in such changes; their onset may be gradual or sudden. However,
because few people were talking about brain tumors, the general public knew
little about them.
Compared to other
cancers, brain tumors have a relatively low incidence, making it an “orphan
disease” by government standards, which classifies any disease with an
annual incidence of less than 200,000 as an orphan disease. Our numbers
today estimate 18,600 diagnoses of brain tumors annually, which includes
over 120 different types of brain tumors.
I personally credit Mr. Lee Atwater for beginning to change society's
attitude about brain tumors when he went public about his disease. In the
early 1990s, Mr. Atwater was Chairman of the Republican National Committee
under President George H.W. Bush. He was the first prominent person to
announce that he was battling a brain tumor. I remember seeing him on the
cover of Life magazine; I knew that his candor would make a
difference for future patients. According to published accounts at the time,
Mr. Atwater had a reputation for being a “bad boy” in politics, but I firmly
believe he made amends for any misdeeds he may have done by coming forward
and empowering people to speak openly about brain tumors.
My, how far we've come. The past decade has brought newer diagnostic and
microsurgical tools and techniques, more effective treatment therapies for
some brain tumors, a proliferation of brain tumor-focused organizations and
support groups, and many patient education publications, including a
significant library of booklets and pamphlets written by the American Brain
Tumor Association. And most notably, having a brain tumor is no longer a
stigma. Rather, this past decade has produced a generation of
information-seekers who have a driving need to have their questions
answered.
The intriguing aspect of this book is its approach: provocative questions
and honest answers given by a clinician and a patient. This resource for
brain tumor patients and their families brings home the fact that no one
needs to feel they are battling this disease alone.
Ms. Dubay has
encountered the disease, the healthcare professionals, the medical system,
and the unasked questions of family and friends. She answers questions and
provides commentaries on issues that only a patient would know how to
address. The brain tumor community-at-large will benefit from her firsthand
knowledge.
Dr. Stark-Vance
responds to questions with clarity, candor, and sound medical expertise. She
does not sugarcoat her answers, nor does she underestimate a patient's need
to know. This resource is a valuable new tool in the patients’ battle
against brain tumors—helpful, supportive, and honest.
It is a must-have
reference for those living in the brain tumor community.
Naomi Berkowitz
Executive Director
American Brain Tumor
Association
March 2003
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