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When It's Cancer: The 10 Essential Steps to Follow After Your Diagnoses    by Toni Bernay & Saar Porrath order for
When It's Cancer
by Toni Bernay
Order:  USA  Can
Rodale, 2006 (2006)

Read an Excerpt

* * *   Reviewed by J. A. Kaszuba Locke

Many will agree with my view that there can never be too much written on the subject of cancer. The words 'You have cancer!' lead to devastating emotions - of trauma, shock, fear, and aloneness - and the urge to get rid of it ASAP. Questions that immediately overwhelm the mind can include: What are my treatment options?; How advanced is it?; What other areas have been affected already? The answers are not immediately available. Diagnosis affects partners, friends, loved ones, often drawing them together, yet sometimes pulling them apart. The damage is not just invasive, but also elusive - it is traumatic physically, psychologically, socially, with mounting concerns for financial and legal issues. It has a huge impact on quality of life.

Toni Bernay, PhD, and Saar Porrah, MD, faced the questions and more when husband Saar was diagnosed with a rare form of cancer. The experience led them to develop a Personal Cancer Management System (PCMS), the major theme in their exceptional book, When It's Cancer, aimed for 'those who need it most: cancer patients and their loved ones'. Their Introduction covers advances in research, statistics, encouragement in making decisions about treatment and care, the importance of advocacy, and a support team. The ten steps of the PCMS are designed around three core principles - 'Be proactive', 'Be inclusive', and 'Get an advocate'. The Acknowledgments begin with an unselfish statement, 'This book has been a long journey - a journey that began with Saar's illness. Through it, he discovered his desire to share his knowledge and expertise as a radiologist and radiation and breast oncologist, as well as his ideas on patient-physician partnership.'

There will be fear, isolation, diagnosis, treatment, remission, recurrence and yes the end of life. Porrath and Bernay show 'the value of believing in yourself and your support system with the conviction of hopefulness'. In a brief aside, Saar wrote: 'Curing cancer is not a cut-and-dried matter of diagnosis and prognosis based on medical facts, risk/benefit ratios of various treatments, the patient's stage of cancer, and the clinician's analytical and skill level ... two other critical factors exert considerable influence in the cancer battle ... the patient's ability to know his priorities and values in life ... and to be proactive in his own diagnosis and treatment. Though we rarely can be sure of a cure, with a significant level of patient involvement, we can predict better treatment results and higher quality of life, regardless of the ultimate outcome.'

Bernay and Porrath comprehensively share their knowledge and experience. They encourage readers to photocopy the 'tools and exercises' worksheets for use and distribution. Each blank worksheet is accompanied by a filled-in sample, and one in particular provides timely questions to ask physicians. The authors tell us that a support circle should include a buddy system and a dependable coordinator, advising that 'People need reassurance that you want them in your life ... be open to what you find.' They address an integrative approach, combining traditional, complementary, and alternative medicine (CAM), useful medical protocols, and the acronym RECE - recognize, empathize, collaborate, and empower, a strategy for getting across your message to others and assuring clear responses. The book lists an abundance of websites, with advice on conducting effective online searches. Resistors are discussed, such as timidity in asking for assistance, and the tendency to see the physician as all-knowing.

There is a lot of love in this book, including traumatic times the authors experienced, while still practicing and writing of the cases they cared for. Especially meaningful for me is: 'All of us have a learned tendency to treat doctors with a degree of reverence. The fact is, they're service providers. If you're not confident that doctor will give you the time, attention, and respect to mutually agree upon a course of treatment, then you need to seriously consider moving on to someone else.' Bernay and Porrath write of oncoligists' roles, 'Within the realm of oncology are multiple subspecialties, each of which fills a specific role on the cancer treatment continuum'. When Saar experienced sleeplessness, severe mood swings, and disorientation, a pharmacologist was consulted, recommending crossover drugs - developed for one disease and found to be helpful in treating another.

Among the many eye-openers for me is one standout: that breast cancer, once believed to take 'one or two different forms', is now known 'to be at least 25 different diseases, the majority of which have very unique ... precise, and ... effective treatment protocols.' On pain management, the authors state, 'According to a statement from the American College of Physicians, 'Most cancer pain can be eliminated, and all cancer pain can be controlled'.' Resources include hospital-based pain management centers, private clinics, or a handpicked pain management team combining health care professionals as well as complementary and alternative therapies. Relating to the delegation of legal authority - i.e. appointing another person to act on your behalf - are legal documents known as advance directives which include a living will, and a medical power of attorney, spelling out 'your wishes for three procedures that may become necessary at some point in your care: ventilator-assisted breathing; feeding tube; and CPR'.

Thanks to Drs. Porrath and Bernay for their openness on a difficult subject. I absorbed every sentence, every tool, all the steps, encouraging outlooks, and more. I have not been so genuinely affected by a medical book since the late Elizabeth Kubler-Ross's On Death and Dying. I highly recommend When It's Cancer to those diagnosed with the disease, their support circles, caregivers, and to anyone interested in personal research, awareness, and advocacy. It is a book that imparts strength, while describing a personal voyage of two doctors (Dr. Bernay faced her own diagnosis of cancer as well, and is a survivor). The book should be made available where patients gather in waiting rooms, and referred to cancer patients by caregivers, friends and family. The burden need not be carried alone. Read Drs. Bernay and Porrath's book - it will open eyes and minds; I know it did mine.

On September 12, 1999, Saar passed away. He had written his own eulogy, 'with plenty of punch lines'. In his words: 'This is a message from the guy in the coffin. Welcome to my family, my friend, and the rest of you, I will keep this short, even though I really have nowhere to go in a hurry ... I have been very fortunate to have lived a good life ... I was able to practice the art, not just the science, of medicine ... My simple message is 'Miss me, do not mourn me'.'

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