"100 Questions and Answers about Brain Tumors", Virginia Stark-Vance and M.L. Dubay, Jones and Bartlett, 2004. 239 pps. ISBN 0 7637 2308 8.
|This is a collaborative effort between Dr Virginia Stark-Vance, a medical oncologist in Dallas-Forth Worth (USA), and a former patient Mary Louise Dubay, also of Texas, who has an anaplastic oligodendroglioma brain tumour.|
In June 2000, within a day of each other, but separated by thousands of miles, Mary Louise Dubay in Plano, Texas, and my wife Marg, in Canberra, Australia, both first experienced the symptoms which later led to a diagnosis of a brain tumour.
Unfortunately my wife Marg was diagnosed with one of the most lethal of the malignant brain tumours, a glioblastoma multiforme, and she passed away almost exactly a year later after travelling her journey with grace and fortitude.
During that time I commenced a web-diary of Marg's progress and links to useful resources for the newly-diagnosed, which I update regularly. It attracts over 150 new visitors each day from people who are desperately seeking information about this disease. The web address is: http://www.ozbraintumour.org/journey.htm
Like Marg, Mary Louise underwent neurosurgery, radiation therapy and chemotherapy. Six months later she was able to resume her working career and has now teamed up with her oncologist to offer a personal overview on the answers to typical questions which patients ask.
This 239 page book is an excellent resource and will be of great assistance to many adult patients, caregivers, friends and relatives.
Not everyone has Internet access
Much of what I have learnt about brain tumours has come from participation on the various e-mail discussion lists over a period of three years which commenced when I first went searching for information on a subject about which I previously knew nothing.
From the thousands of messages posted on those Lists I developed an understanding of the likely progress of the disease, the ways that people coped, what therapies were being used in various parts of the world, the scams and frauds which infest the world of cancer, and what seemed to be working from among the investigational approaches.
Those of us who are immersed in the world of the Internet and have learnt how to navigate our way around the dross and the gems which it contains tend to forget that we are very much a minority and most people still obtain medical information by verbal communication, audio-visual media, or paper-based resources.
This is where this book will be of great assistance to those who ask questions and seek answers but have no connection with the Internet and have no direct contact with other brain tumour patients and carers or a brain tumour support group.
For those who ask questions
Mind you, not everyone wants to know.
I recall bumping into another husband in the ward where my wife was hospitalised and I asked him what type of brain tumour his wife had and he responded: "I haven't a clue .... 'nurse what's the name of that thing in my wife's head?'"
If the tumour has been biopsed or resected and the type and grade identified then that will largely determine what treatment paths are indicated. Some people can only deal with the diagnosis by denial and others will hand it across to the Doctor and say "Whatever you recommend is fine with us". There is a growing body of informed and questioning health consumers who want to know and understand more and this book will be devoured page by page by them.
The book is divided into eleven parts and an appendix and covers: basics, diagnosis and pathology, neuroimaging (MRI, CT etc), neurosurgery, radiation therapy, chemotherapy and other drug therapy, clinical trials, complications, medications (dexamethasone, anti-convulsants etc), living with a brain tumour (emotional and practical aspects), taking control of your future (coping strategies).
Within each part the information is conveyed by using numbered questions and answers and while most of the text appears to have been written by Dr Stark-Vance, Mary Lousie Dubay often adds extra commentary based on her own experiences, particularly in the last two parts of the book.
What adds value to the text are margin notes in the early sections which isolate and highlight explanations of important terminology and therefore one can flick through the pages looking for a particular section and go straight to the relevant short explanation in the margin.
Another useful feature are several tables on specific topics e.g. drug interactions with anti-convulsant medications, and a number of clear illustrations.
How the questions are formulated
But the real strength of the book lies in the formulation of the questions. They are exactly the type of questions circulating in the mind of a patient or carer. They assist in refining what might have previously been a vague concept troubling a patient. For example, here is Question 48:
"48. I have had surgery, radiation therapy, and chemotherapy. My oncologist recently said that after a year of treatment I have had a 'complete remission'. I asked him if this is the same as being cured, but he said no. What is the difference between remission and cure?"
Even if the total of 100 questions was selected as a gimmick for the title of the book, all the main subjects appear to be covered.
Intended for US readers but still valuable
The book is primarily directed at a North American readership and therefore some of the information conveyed might be puzzling to readers from other countries, but not misleading.
For example, there is a section (pages 30-31) on how to read your pathology report. Pathology reports are rarely, if ever, given to Australian brain tumour patients. The report will be kept on the patient's file and only the main finding will be given to the patient.
I recall one friend whose pathology specimen was creating discussion and confusion among the best neuropathologists in Australia and the only way she could discover what the latest interpretation was, was to sneak a look at the upside down file when her oncologist left the room for a minute! Perhaps that was the intention?
Another example is part seven, which incorporates twenty pages about clinical trials. Most Australian brain tumour patients would not come within cooee of a clinical trial for brain tumours. This is because what few trials there are, are mostly confined to the major hospitals and specialist centres e.g. Royal Children's Hospital, the Sydney Neuro-Oncology Group, Royal Brisbane Hospital, and the Peter MacCallum Cancer Institute.
Nor would Australian patients always have access to the MRI scans and therefore the real benefit of the section on "How to read your MRI scans" (pages 40-43) will probably be to reinforce the message that they are technically complicated resources which need to be interpreted by the specialist to the patient.
All basic questions answered
Despite these quibbles the book deals effectively with all the basic questions and also a number of subjects which are not dealt with in many of the existing patient handouts e.g. possible long-term cognitive loss following whole brain radiation therapy, and the distinction between 'all visible tumour' and the remaining microscopic cells.
As a reviewer, one has to say that the subject index is a "minimalist" one and does not contain links to all the topics covered in the text - one has to virtually read the entire text and identify all the references to your topic of interest with a pen or a post-it sticker.
When you double-check with the index contents only a proportion will be identified. Furthermore, it is possible that the index in this very first edition might have been constructed on the basis of an earlier draft where the page sequence was different. For example, I wanted to check the location of comments about an electroencephalogram (EEG) and whereas the index identified page 145, the text appeared at page 143. A little digging "in the vicinity of" might be necessary on occasions.
All these comments are relatively minor within the context of the outstanding service which the authors have performed in producing this text.
How does it compare with the ABTA Primer?
Those who are already familiar with the resources currently available to brain tumour patients and carers might ask "How does this book compare with the 68-page Primer produced by the American Brain Tumour Association?" which has now extended to twenty-five editions.
My answer would be that the 100 Questions and Answers book will probably suit the needs of most newly diagnosed brain tumour patients and carers and the ABTA Primer is also useful to have if you want to obtain more detail and leads about the less common brain tumours, or paediatric brain tumours in general, although I believe there are also now specific resources available in that area.
Both deserve to occupy a prominent place in any resource centre which is intended to assist brain tumour patients.
How to obtain a copy of this valuable new resource?
Readers of this review who live in the United States should go to the Web address for the American Brain Tumour Association: http://www.abta.org/library.htm and read what is written about obtaining a copy. If they do not have access to the Internet they should phone the ABTA on: 800-886-2282
Unfortunately Brain Tumour Australia has completely distributed to treatment centres and patients the 500 copies we imported from the USA but will provide a free copy of the ABTA Primer to patients or carers who contact it on Freecall number 1800 282 912.
Reviewed by Denis Strangman, Interim Chair, Brain Tumour Australia Inc 29 January 2004.