Information is empowering, especially when it's dispensed in manageable doses. Reading about people coping with cancerthe same one you are dealing withis not only educational and inspiring, it can save a life. Couple that with our fascination with celebrities and there is much we can learn from their experiences.
Celebrity cancer memoirs, including The Time of My Life by Patrick Swayze and Lisa Niemi Swayze (Atria 2010), Resilience: Reflections on the Burdens and Gifts of Facing Life's Adversities by Elizabeth Edwards (Broadway Books 2006), Cancer Schmancer by Fran Drescher (Grand Central Publishing 2002), Time on Fire: My Comedy of Terrors by Evan Handler (Little, Brown and Co. 1996, Argo-Navis 2012), provide readers with a 'behind the scenes' look at how a famous person dealt with a cancer challenge that may be common to many of us. Not surprisingly, their struggles are essentially no different from any of ours.
It's no secret that celebrity information not only sells, it can educate people about many important issuesincluding cancer.
According to USA Today, when Katie Couric's colonoscopy was broadcast on live television, colonoscopy rates rose more than 20 percent. A similar reaction occurred in 2008 when Hall of Fame basketball player and NBA commentator Charles Barkley invited American television viewers to an on-air broadcast of his colonoscopy. Even Dr. Oz got in on the act, which created a noticeable spike in men's screenings for colon cancer. When Michael Douglas shared his throat cancer story, he taught us about the connection between human papillomavirus (HPV), oral sex, and head and neck cancers. Angelina Jolie's op-ed in the New York Times, detailing her genetic predisposition to breast and ovarian cancers and her subsequent decision to undergo a bilateral mastectomy, educated millions of people on the issue of genetic screening and preventive treatments and inspired them to take a proactive role in managing their own health.
Hamish Pringle, author of Celebrity Sells (John Wiley & Sons 2004) and former Director General of the Institute of Practitioners in Advertising, explains that 'the role celebrities play in people's lives goes beyond a voyeuristic form of entertainment; they actually fulfill an extremely important research and development function for them as individuals and for society at large. People use celebrities as role models and guides.'
That's what 'infotainment' can do and what we hope Reimagining Men's Cancer exemplifies by dedicating itself to specific cancers affecting men and the people they love.
Because every twenty-three seconds someone in America is diagnosed with cancer, the number of people affected is continuing to grow and the data is not encouraging. The American Cancer Society estimates that nearly 2 million new patients will need treatment in the coming year. A recent World Cancer Report from the World Health Organization expects a 57 percent rise in cancer cases in the next twenty years.
Christopher Wild, director of the International Agency for Research on Cancer, says, 'We cannot treat our way out of the cancer problem. More commitment to prevention and early detection is desperately needed in order to complement improved treatments and address the alarming rise in cancer burden globally.'
The report says about half of all cancers are preventable and can be avoided if current medical knowledge is better delivered. The disease could be tackled by addressing lifestyle factors, such as smoking, alcohol consumption, diet, and exercise; adopting screening programs; or, in the case of infection-triggered cancers such as cervical and liver cancers, through vaccines. 'The rise of cancer is a major obstacle to human development and well-being,' Wild says. 'Immediate action is needed to confront this human disaster.'
This emphasis on prevention and early detection demonstrates the necessity and value of education. It is the key for anyone who might otherwise not pay attention to an epidemic that is likely to affect him or her or a loved one.
But a diagnosis of cancer is notand does not have to bean automatic death sentence. With advances in genomic (DNA) testing and diagnosis, we have learned that cancerif detected earlycan be managed just like many other chronic diseases or, in many cases, prevented through changes in diet, exercise, and general lifestyle.
That includes developing a sense of humor, which has proven time and time again to help everyone, from patients to doctors and especially those who can't figure out what to do or say when confronted with such a big challenge.
Consider the story of Jamile, a single father from Cincinnati, whose young daughter struggled to get accept his going bald as a result of his cancer treatment. One day, in an effort to lighten up the situation, he picked her up from school with three of his friends all wearing caps to make them appear bald while they serenaded Jamile's daughter and her classmates with a rousing and funny rendition of Willow Smith's hit song 'Whip My Hair.' She was delighted, as were her friends, and, from then on, being bald took on a whole new meaning for this child and her father.
In 2013, actress cancer survivor Christina Applegate told womenshealthmag.com, 'I laughed more in the hospital than I ever have in my life, making fun of all the weird things that were happening to me. My friends would walk in with this sad look, and I would throw something at them and say, 'Come on! This isn't the end of the world!'?'
Herbie Mann, the legendary jazz musician who formed the Herbie Mann Prostate Cancer Awareness Music Foundation after being diagnosed in 1998 and gave concerts at which he offered free screening to all men in attendance between the ages of forty and seventy-five, shared similar sentiments. 'When I first got cancer, after the initial shock and the fear and paranoia and crying and all that goes with cancerthat word means to most people ultimate deathI decided to see what I could do to take that negative and use it in a positive way.'
This book is full of authentic and encouraging anecdotal evidencefrom celebrities we have come to admire and trust as well as from 'normal' people with valuable viewpoints of their ownwho together offer us remarkably useful teachable moments that can educate and inspire and, in some cases, serve as life-saving cautionary tales.
Celebrity Diagnosis, the website we founded and launched in 2009, which is now featured as an integral part of the American Association for Cancer Research (AACR) Foundation website, combines celebrity health conditions (diagnosis, treatment, survivorship, etc.) with up-to-date medical information on common and uncommon cancers. By doing so, we have created numerous teachable moments in medicine, leading visitors to increase their health awareness and medical knowledge, which subsequently increases the likelihood of their considering early detection and preventive behavior.
'We have found from our own reporting on medical news,' says Robert Stern, CEO of MedPageToday, a leading source of medical information online, 'that nothing resonates with our professional clinician readers more than a celebrity illness because call volume to offices increases from patients when a celebrity is diagnosed. This provides a teachable moment for the physician to share with the patient.'
The AACR, with its 35,000 members from around the globe, making it the oldest and largest scientific organization in the world, agrees, and by featuring Celebrity Diagnosis it is now expanding its support of high-quality, innovative cancer research and education. Through its numerous publications and frequent conferences, the AACR works with a vast umbrella of cancer organizations, hospitals, and individuals.
Meanwhile, the pharmaceutical industry, with its mission to address unmet medical needs by developing new drugs, still takes ten to fifteen years at an average cost of $2.4 billion to sponsor the applied research, tech development, and regulatory requirements to develop a single new drug, which may or may not serve its intended purpose.
What about the needs of consumers for better access to existing medical knowledge and practices? Can increasing health awareness and providing scientific information lead to better use of existing resources, including prevention and early detection screening methods? Social media and mass market books can be valuable allies in the task to equip people with what is necessary to manage and improve their own health.
We certainly hope so. That's why our philosophy of Participatory Medicine is a lynchpin of Celebrity Diagnosis and a key to empowering people to partner with their doctors in taking responsibility for their healing.
The definition of a modern 'e-patient' is to be engaged, equipped, and empowered, three integral qualities that form the foundation of our approach.
Dr. Katherine Smith of Johns Hopkins Bloomberg School of Public Health feels that traditional media coverage of celebrities contains little material that conveys useful health information, concluding that 'media attention to such newsworthy events is a missed opportunity that can and should be addressed.'
We agree. There seems to be a large missed opportunity to educate people about prevention and personal empowerment. That's why Reimagining Men's Cancers now existsto inform, inspire, and ignite the appropriate action that is needed to live healthier lives. But you may ask, What does a famous person have to do with me? Studies of the power of celebrity to create teachable moments, such as those conducted by Professor Graeme Turner of the University of Queensland Centre for Critical and Cultural Studies, Hamish Pringle at the Institute of Practitioners of Advertising, and Robert Havighurst, PhD, author of Human Development and Education, suggest that the personal life experiences of individuals we admire and respect from popular culture can create teachable moments that may be vicarious at first but ultimately prove to be educational and, in some cases, lifesaving.
According to Mable Kinzie of the University of Virginia Curry School of Education, who has developed instructional design strategies for health behavior change, there is a five-step process to developing educational materials and making sure they resonate and connect, producing real results.
It begins with gaining attention by featuring famous people whose health has become a news item, and then providing information on specific conditions (in this case, men's cancers). It continues by guidance through clear and concise information about how a particular cancer exists and operates, as well as supplying anecdotal reports, interviews, and expert medical resources. When presented together, these enhance retention and stimulate appropriate social discourse that inevitably shares this knowledge with others.
For someone newly diagnosed with male-specific cancers, such as prostate, penile, and/or testicularor for those suddenly thrust into the role of caregiverthe medical information provided here is easy to find and read, providing you with a comprehensive overview of the particular cancer's traits, warning signs, symptoms, diagnostic techniques, as well as prognoses and treatments, both traditional and alternative. This medical information is complemented by personal accounts and interviews from celebrities and non-celebrities who have been challenged by the same cancers.
For example, the chapter on prostate cancer begins with a view of basic anatomy; an overview of how we view this particular cancer today; signs, symptoms, and diagnosis; as well as scientific information on screening guidelines. You'll find a comprehensive survey of treatments, prevention, and short- and long-term forecasts.
Woven throughout the book are celebrity stories, both medical and anecdotal, from men, including Michael Douglas, Robert De Niro, Mandy Patinkin, Harry Belafonte, Lance Armstrong, and many others, as well as stories from men you may recognize as neighbors, colleagues, and friends.
Since scientific concepts such as DNA and the human genome have become commonplace through television shows like CSI and Dr. Oz, as well as other media like the New York Times and Time magazine, this vital information is now more accessible than ever and much better understood by the general public, enabling patients and caregivers to raise their level of interaction with their doctors.
We like to cite the Angelina Jolie Effect, which has caused curiosity about cancer and DNA/genetic testing to skyrocket, as more and more patients are asking to have their tumor genomes analyzed in order to select the right drug treatment for them.
When news of a celebrity being diagnosed with cancer goes public, physicians invariably see a sharp increase in the volume of calls to their offices and online search-engine traffic spikes regarding the specific disease or medical condition associated with that celebrity diagnosis.
We refer to this interface between health communication and pop culture as the Goody-Gaga Effect, which refers to the sudden increase in public interest in a specific disease or medical condition when it is associated with a celebrity. The Goody-Gaga Effect is named after the late British TV personality Jade Goody, whose battle with cervical cancer was followed daily in the UK, and Lady Gaga, who made her 'borderline positive' lupus test public, prompting a huge spike in the attention and support given to that disease.
But when celebrities (or their publicists) talk about cancer or other medical issues, the results can be mixed. If they mistakenly publicize information that is confusing or contradictory to established medical protocols, they may cause harm. On the other hand, when they provide the public with an accurate, inside look at their situation, this can become a teachable moment and lives can be saved. Exploring examples of how this works is not only instructive and, in some cases entertaining, it colors the way we essentially view celebrity and the manners in which we might disseminate and digest life-altering information.
Brian L. Dyak, president and cofounder of the Entertainment Industries Council and the Entertainment and Media Communication Institute and the award-winning creator of the PRISM Awards (FX Networks) television special, is a pioneer of 'edutainment,' which promotes the power of celebrity to depict health issues. For over twenty-five years, Dyak has successfully constructed a bridge between the entertainment industry and health and social policy issues. His thoughts on the link between the entertainment industry and national health have inspired us to reach more people with the foundational information you will find in this book.
Unfortunately, cancer is not going away anytime soon but neither is our fascination with celebrities, especially when theylike any of usbecome vulnerable. With this in mind, the need to educate and heal is clear. For the more than 230,000 men who are diagnosed with gender-specific cancers (prostate, penile, testicular, bladder, breast) each year in the United Statesas well as for the loved ones and medical professionals who care for themwe hope this book will offer great benefits.
Barron Lerner, MD, Professor of Medicine and Public Health at Columbia University College of Physicians and Surgeons, demonstrates in his book When Illness Goes Public: Celebrity Patients and How We Look at Medicine how celebrities significantly influence public attitudes toward diseases and their treatments. Lerner concludes that celebrity cases can educate the public, create advocates for research and care on behalf of other people with the same disease, and even influence aspects of the professional training of physicians.
By exercising the powerful magic of storytelling, celebrities are capable of influencing people in a wide variety of ways. But they can do much more than move us emotionally. They can raise our awareness about cancer and, in many cases, even prompt their fans to become better informed and seek the preventive care and early diagnostic screening they need.
People in the public eye have the potential to provide teachable moments in medicine. We can learn from them, as we can from most anyone who has experienced cancer. Anyone who has been diagnosed and undergone treatment has something to offer. Anyone who has served as a personal caretaker has wisdom to share. And medical professionals of all stripes have much insight to offer.
Together, the anecdotes and experiences shared here in Reimagining Men's Cancers provide a substantial collection of cancer portraits, and, along with all of the comprehensive medical information, you should be able to find much of what you may need in order to understand what you are dealing with and to figure out how best to proceed. Most important, you will be better equipped to communicate effectively with your doctors, which should provide you the best-case scenario for making what can often be difficult choices.
Emmarie Truman, who was diagnosed with cancer as a teenager, was given a button one day while in a radiation room that read 'Cancer Sucks.' She agreed that this is the best way to look at it. 'Cancer does suck,' she said, 'and the sooner you accept that, the sooner you can realize that no matter how much it sucks you have to deal with it and that you might as well deal with it with a smile.'
This simple lesson is not to be overlooked. You will find that Reimagining Men's Cancers is full of them. By combining the inspiration of 'average' patients and the power of celebrity stories with vital information about common and uncommon cancers, we hope that this book will help you become better informed as a patient and/or a patient advocate.
In his State of the Union address earlier this year, President Obama announced a new Moonshot to Cure Cancer campaignthe 'Precision Medicine Initiative'to eradicate cancer as soon as possible and was inspired, in part, by the tragic loss of Vice President Joe Biden's son Beau to cancer in 2015. Such a high-profile case can lead to increased awareness in the general public as well as launch renewed efforts on governmental and private institutional levels to prevent and eventually eradicate this disease.
In the chapters that follow, we'll explain why the time is ripe, as MD Anderson Cancer Center says, to 'make cancer history' through the cutting-edge practice of precision medicine using sophisticated targeted treatments that attack the root causes of the disease.
Together, we can make a difference.
A Note on Resources and Celebrity Diagnosis
Throughout Reimagining Men's Cancer, we present relevant scientific data about each type of cancer discussed in a particular chapter. Because this book is not primarily intended to be a textbook for medical students/doctors but rather a guide and teaching tool for anyone, we have attempted to dose out the medical information in easy-to-read and appropriately digestible pieces that are manageable and satisfying.
Those seeking additional medical information/anecdotal stories about other celebrities with cancer can visit www.celebritydiagnosis.com.
A Note on Non-Celebrity Stories
In an effort to provide a comprehensive collection of patients and caregivers affected by men's cancers, we have selected from a wide assortment of anecdotes, blogs, interviews, and stories from men and women throughout the country. Each of the My Journey segments in this book represents an individualized composite of the many people we have been in contact with over the past several years.
©2016 Mark S. Boguski, MD, PhD, Michele Berman, MD, David Tabatsky. All rights reserved. Reprinted from Reimagining Men's Cancers: The Celebrity Diagnosis Guide to Personalized Treatment and Prevention. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442.