The Story Behind "100 Questions and Answers about Brain Tumors"
In 2002, publisher Jones and Bartlett introduced a series of books for a lay audience, each profiling a medical condition. The series, "100 Questions and Answers about____" presented the diagnosis, treatment, and terminology associated with a condition, and each book in the series was authored by a patient and one or more specialists. The first books in the cancer series were well received and soon dozens of books were introduced dealing with cancer, heart disease, diabetes, and other conditions.
Dr Stark-Vance was asked to write the book about brain tumors. At the time, her patient M.L. (Mary Louise) Dubay had completed radiation therapy and chemotherapy and expressed the desire to help other patients deal with the emotional aspects of brain tumor diagnosis and treatment. M.L. had a left frontal anaplastic oligodendroglioma, and had a resection of her tumor by Dr. Brent Morgan, followed by state-of-the-art radiation therapy under the direction of Dr. Ed Gilbert. M.L. was at that time working as a vice president of marketing for tech giant Nortel Networks, and had completed two years of chemotherapy. Despite the demands of her job, M.L. was able to continue to work full time through most of her treatment. She recognized that this would be difficult, if not impossible, for many patients. However, she wanted to encourage newly diagnosed patients that it is possible to survive a malignant brain tumor.
Dr. Stark-Vance and M.L. met with the publishing staff at Jones and Bartlett in Massachusetts. They discussed their vision of how the book could help newly diagnosed brain tumor patients and their families, including a glossary of terms and features that would address the common concerns brain tumor patients. For example, one feature was "How to Read Your Own MRI scans" which explained the different kinds of images included with a standard MRI and how addition of intravenous contrast helps the radiologist determine the type of tumor seen. Although the previous books in the series had not included color images, Dr. Stark-Vance argued that color images are necessary to portray PET scans as the patient would see them. Finally, although the other books in the series used stock images or models for front-cover illustrations, M.L. and Dr. Stark-Vance wanted a "real" brain tumor patient, to emphasize to the public that brain tumor patients can look and feel healthy, and live normal lives.
M.L. had completed radiation therapy with another brain tumor patient, Heather, who had an anaplastic astrocytoma. Heather's case was unusual in that her father had the same type of tumor at the same age, when Heather was a toddler. Sadly, her father died a few years later. Heather also had two young children of her own. However, the progress in brain tumor treatment allowed Heather to survive her tumor. Her unique story and her "cover girl" looks made her a perfect choice for the "real" brain tumor patient for the cover of the first and second edition.
M.L. and Heather were awarded ten-year survivor awards at "Celebration of Life"
The first edition was well received, but a number of new treatments became available after it was published. Dr.Stark-Vance developed a clinical trial for recurrent malignant gliomas with Avastin and CPT-11. She presented the results of her clinical trial at the World Federation of Neuro-Oncology meeting in Edinburgh, Scotland in 2005. Dr. Stark-Vance is seen here with Kathy Oliver and Denis Strangman of the International Brain Tumour Alliance, which was also launched at the meeting. Over the next few years, Avastin was used in multiple other clinical trials around the world. Avastin was granted FDA approval for the treatment of malignant gliomas in 2009.
The second edition of "100 Questions and Answers about Brain Tumors" was a major revision, adding many new illustrations and replacing some of the original questions with new and updated material. M.L. wrote of her experience with seizures while on vacation, a life-threatening complication that fortunately did not herald the recurrence of her tumor. M.L. also updated many of the questions in the book about health insurance, disability, and hospice. Dr. Stark-Vance added new information about targeted therapy, anti-angiogenic agents, and tumor treating fields (now called Optune). She also included photomicrographs of the most common adult brain tumors, comparing them to normal brain. Although the second edition still included 100 questions and answers, the new addition added over 25 pages. Heather also returned as the "cover girl," now as a long term survivor. Her photo shoot was a gift from the wife of another brain tumor patient, Jeanette Korab Gorsky, who is a professional fashion photographer. The second edition is available on Amazon here.