Book Review

Brain Tumors: Leaving the Garden of Eden

by Paul M. Zeltzer, M.D., Neurooncology. Shilysca Press, ISBN 0-9760171-0-5

This book is the product not only of Dr. Zeltzer’s medical training and experience with people with brain tumors since 1978, but also of his interactions with patients, answering questions on websites over a seven-year period. There is much of benefit in this book — as long as you remain keenly aware that there is nothing directly pertaining to hemangioblastomas.

“The perspective I used in writing this book came about after reading Genesis: A Living Conversation,” a work that started as a Public Television series in 1996. Acclaimed television journalist Bill Moyers gathered prestigious writers, film critics, clergy, scientists, physicians, and philosophers from many cultures and moderated a round table dialogue. This diverse group studied the stories of Genesis and discussed how our reactions to ordinary and familiar situations echoed many themes of these stories.” [p. 19]

“Genesis describes Eve questioning the highest authority figure. This parallels an individual’s instinctual need to question a doctor’s authority about diagnosis or treatment ... and risk the consequences. Other examples include the story of Noah’s Ark: ordinary people today caught up in a torrential flood (in our case, following a diagnosis of a brain tumor) and reaching for the Ark of safety during the long journey toward health.” [p. 20]

“In spite of the diagnosis, many people plunge into a search for knowledge, questioning and sometimes challenging their physicians. Others choose to follow their doctors’ recommendations without question and believe that Fate will determine the outcome. Which pathway is preferable for you?

“Resolving that conflict is the subtext of this book. How can you work with and understand those feelings, so that you receive the best care, are aware of the choices and alternatives, and do not feel punished? How do you learn to manage the chaos you feel and minimize the confusion so that you can make good decisions? I plan to teach you how.” [pp. 21-22]

The book offers good advice on organizing your information and keeping a notebook, which is a good methodology for all issues encountered with VHL. There is a very good section on using the internet to do research, and how to evaluate the truthfulness of different website. There is good information on how to seek a second opinion, and how to deal with the healthcare system. There are very helpful discussions of medications.

There is also a set of “job descriptions,” including a very good job description for a caregiver [pp. 90-92]

But for people with VHL, there is one major deficit in this book: it does not once mention hemangioblastoma. The thrust of the discussion is for people with malignant tumors who may benefit from radiation therapy or chemotherapy. At this time, neither of those approaches is helpful with VHL.

Hemangioblastomas represent only two percent (2%) of all brain tumors. In this book, there is no one mention of this kind of highly vascular tumor.

This should not keep you from deriving other benefits from the book, but do be careful in reading the recommendations for therapy.

For example, he recommends that “a biopsy should be performed to make sure it is cancer and not something else.” [p. 39] While pathology review of surgically removed tumors is always a good idea, biopsy is NOT recommended for a hemangioblastoma. In a biopsy, they remove a sample of the tissue from the tumor and look at it under the microscope to make sure they understand the nature of the tumor. In the case of most brain tumors, this is certainly good advice. But a hemangioblastoma is made up of capillaries. It is a tangle of blood vessels. If you take a snip of this kind of tumor, what do you think might happen? It will bleed. And bleeding in the brain is called a stroke. So, biopsy is a very bad idea for a hemangioblastoma.

In all other respects, however, there is a wealth of practical advice in this book. Just remember that he is not talking about your particular tumor type. Hemangioblastomas are not malignant, they do not metastasize to other tissues in the body, and they do not respond traditional kinds of chemotherapy and full-brain radiation. All the estimates about life expectancy in this book do not pertain to VHL.

It is important to remember this when reading in the press about new treatments for brain tumors. If hemangioblastomas are so rare that they do not even rate a mention in this book about “all” brain tumors, you can be sure that they are not included in advertising for new methods of stereotactic radiosurgery.

Zeltzer has some good groupings of families of brain tumors. However, hemangioblastomas do not fit into any of his categories. Stereotactic radiosurgery is mentioned only in passing, as a possible treatment for some kinds of brain tumors. But the special issues involved in radiosurgery for hemangioblastomas are not discussed.

“There are a few important pointers about the politics of getting multiple opinions. First, you do not need to apologize for this; it’s your right! If questioned, you might say, “I’m getting several opinions in order to make the most informed decision possible about my treatment options.” If a doctor gives you a hard time or shows an attitude problem, don’t let it bother you. It’s immaterial if doctors approve or disapprove of your decisions. Remember, you are out of the Garden of Eden already. Now is the time to search for knowledge to make your life better. In many ways, you have to think selfishly and follow your own instincts — no matter what other people say or think.

• Tell your primary physician that you are seeking a second and third opinion.
• He may be helpful in referrals or in interpreting any conflicting information.”

And in the case of hemangioblastomas, don’t stop at second opinions from local doctors. Feel free to seek input from a skilled neurosurgeon with expertise in the vascular structures of the brain and experience specifically with hemangioblastoma.

See also next article: Finding a Neurosurgeon

As printed in the VHL Family Forum 13:1, April 2005. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.