Living With a Brain Tumor: Dr Peter Black’s Guide to Taking Control of Your Treatment Peter Black, M.D., Ph.D, F.A.C.S. with Sharon Cloud Hogan An Owl Book – Henry Holt and Company 2006 New York, New York ISBN-13: 978-0-8050-7968-5 and ISBN-10:0-8050-7968-8 $17.00 (USA), $23.00 (Canada) 336 Pages

For those patients and carers who are scaling the rock face that is a brain tumor diagnosis, the climb can at times be arduous, fearsome and exhausting. At other times it can be exhilarating, empowering and inspiring. But the main thing is not to panic as you negotiate the steep ledges, precipices and unsure footings along the way.

From the very first page of his new book “Living With a Brain Tumor: Dr Peter Black’s Guide to Taking Control of Your Treatment”, the eminent Harvard Medical School professor of neurosurgery calms the panic that anyone would feel on hearing the words: “You’ve got a brain tumor.”

In straightforward and jargon-free language, Dr Black’s book – aimed primarily at the brain tumor patient, family and caregiver rather than medical professionals – is 336 pages’ worth of invaluable, comprehensive information including numerous aspects of the brain tumor journey.

Dr Black (with Sharon Cloud Hogan, an editor at The New England Journal of Medicine) writes with authority and expertise, but at the same time with great warmth and understanding.

He covers everything from the basics (giving an excellent explanation of the different types of brain tumors and areas of the brain) to various diagnostic tests (how they work, what they feel like, how long they take and how quickly the results are usually available) to treatment options, including a very up-to-date section on newer therapies.

There are more brain tumor treatments in the development pipeline than ever before. New agents and combinations of drugs are being examined in clinical trials. New methods of delivering those therapies are being investigated. Dr Black’s book includes quite a few of these novel approaches. He has usefully divided them into categories so that patients, families and caregivers can get a good overall impression of what areas of research are promising, including drugs that halt cell division, anti-angiogenic therapies, differentiating agents, immunotherapies, gene therapies, targeted molecular therapies and intratumoral therapies.

What’s more, Dr Black actively encourages patients to ask their doctors about emerging and experimental therapies and the possibility of joining a clinical trial. Sometimes patients might feel worried or shy about broaching these subjects. For those who need help with this, he provides a useful list of questions which can be asked of a patient’s specialist.

Information on treatment side effects, drugs for swelling, seizures and other problems is also included in the book.

One of the best features of “Living With a Brain Tumor” is the superb Appendix at the back of the book. Those who want to know more about the prevalence and incidence of brain tumors will find food for thought here. A good reading list, linked to chapter headings, is also included. The resources section of the Appendix contains a listing of over 50 centres in the United States and Canada which treat adults with brain tumors. There are nearly 200 North American centers listed in the book which treat children with brain tumors.

Contact addresses for further information about support groups, radiotherapy and chemotherapies, newer therapies and clinical trials, supportive care, wellness resources and general resources are also included. It must be said that this section is obviously aimed at those brain tumor patients who are living in America and Canada. But on the whole, the book translates very well on an international level and brain tumor patients in other countries will generally find it very relevant to their own situations. Website addresses are included for most of the listings in the Appendix, making virtual visits easy.

Dr Black has been a practicing neurosurgeon for more than 25 years. In addition to his work at Harvard Medical School as the Franc D Ingraham Professor of Neurosurgery, he is also chair of the Department of Neurosurgery at Brigham and Women’s Hospital and at Children’s Hospital in Boston. He is also chief of neurosurgical oncology at the Dana-Farber Cancer Institute. He has treated over 5,000 brain tumor patients and published over 300 professional articles on brain tumors. You might think that a book from someone so long “in the business” might have lost that personal touch and, if you’ll pardon the pun, be written in a very cut and dried manner.

Quite the contrary.

It is a measure of Dr Black’s understanding, not just of the surgical and oncological aspects of a brain tumor diagnosis, but of the emotional and social trauma attached to this disease as well, that he has included a section in his book on “Working on Wellness” and “Reasons for Hope”.

In fact, the word “hope” appears repeatedly throughout Dr Black’s guide – not in the context of false hope, but realistic hope. He admits that brain tumors are a “vicious opponent”. But he also writes: “I want people with brain tumors to know that many kinds of brain tumors are compatible with a long and productive life. If you have a brain tumor, I want you to know you are not alone. I want to get the word out that many people do survive a brain tumor for many, many years, and even with the tumors that remain difficult to treat, we’ve made promising inroads.”

Dr Black acknowledges and describes some tough issues which brain tumor patients face such as their struggle with life decisions. Should they marry? Travel? Continue to work? How much should they tell the children? How is self identity affected? How are relationships altered by a brain tumor diagnosis? One teenager he quotes asks: “After how many dates do I say that I have a brain tumor?” Dr Black writes that he has seen families torn apart by a brain tumor diagnosis but equally he has seen how the challenge has brought out the best in people and become the glue which has held families together. Dr Black devotes an entire chapter to “What a Brain Tumor Means for Me and My Family”. He pulls no punches, but with fatherly wisdom guides one through the perils and pitfalls, challenges and triumphs that people of all ages are faced with on this journey.

He has also included in his book inspirational and moving quotes not only from literary sources, but actual patients, families and caregivers. Brain tumor patient Lucy Grealy (in an excerpt taken from her book “Autobiography of a Face”, Houghton Mifflin Company, 1994) describes her ninth birthday.

“When my whole family came to visit me for my birthday, I sat in a wheelchair and gazed at them, feeling splendid. I could tell they were shocked at the sight of me. I had been an absolutely normal nine-year-old the last time they saw me, some ten days before. My older sister spoke politely to me, as did my twin sister. They’d never been polite to me before, and I knew that a chasm had opened between us. How could I explain that the way I felt now was actually better? How could they ever know where I had just come from? Suddenly, I understood the term visiting. I was in one place, they were in another, and they were only pausing. We made polite conversation about people at school, from the neighbourhood, talked about things entirely inconsequential because it wasn’t the subject that counted but the gesture of conversation itself. You could have parsed each sentence not into nouns and verbs but into signs and symbols, artificial reports from a buffer zone none of us really owned or cared to inhabit.”

As the mother of a brain tumor patient, I am finding this book invaluable in grappling with the day-to-day challenges this illness presents. In the guide’s pages I have found knowledge, reassurance, inspiration and hope. These things don’t come through intravenous drips or in blister packs or pill bottles – but they are certainly a vital part of treatment. For patients, families and caregivers they are powerful tools in dealing with a brain tumor diagnosis.

Knowledge, reassurance, inspiration and hope can be the safety ropes which stop you falling from that daunting rock face you’re climbing.

Kathy Oliver

Secretary, IBTA

London, 28 January 2007

Click here to return to the main webpage for the International Brain Tumour Alliance.