“From Whispers to Shouts: The Ways We Talk About Cancer”, written by Elaine Schattner and published by Columbia University Press is due to be released in February 2023.

Cancer is more than a condition. The word “cancer” is loaded with frightening implications. For anyone who’s received a diagnosis and for their loved ones and friends, the picture that invariably springs to mind is grim, replete with scenes we know from movies of drastic chemo treatments, pain, suffering, shocking debilities and inevitable fading away. Even knowing the remarkable advances in treatment in recent years, even being aware that cancer is not the death sentence it once was, we find it hard to get those pictures out of our minds.

Our fears are not groundless. The disease is still something to be reckoned with. According to a World Heath Authority report dated February 2022, cancer remains a primary cause of death around the world, “accounting for nearly 10 million deaths in 2020, or nearly one in six deaths”. Its ubiquitous nature means there are few people on this planet who haven’t been touched by it, directly or indirectly. I’ve lost a mother, father and brother to cancer and am far from alone in suffering not just the grief of bereavement but the despairing helplessness of witnessing a loved one’s pain, distress and inexorable decline. I, like the rest of the world, yearn for the day when certainty will exist, when all types of cancers can be cured, whenever diagnosed, when we will no longer have to confront the fear and contend with the suffering and premature death of those we care about.

Elaine Schattner’s book looks at the relationship we have with cancer, our perceptions, attitudes and beliefs and how these have evolved over the decades. “From Whispers to Shouts” in the title is reflective of how the volume of public discourse has amplified in accord with cultural and social change. Before 1900 cancer, in the rare instances it was talked about at all, was only ever done so in hushed tones. It was considered a stigma, a shameful secret, untreatable and inevitably terminal.

Schattner’s central argument is that “attitudes about cancer have an unmeasured but profound impact on what care patients receive” and such attitudes influence cancer patients in their decisions about treatment.

As the book’s author, Elaine Schattner is impeccably qualified on many levels. A journalist who has contributed articles to high profile publications such as The Atlantic, NPR, New York Observer, Scientific American and The Washington Post, she is a graduate of Yale College and the New York University School of Medicine, an Associate Professor of Medicine at Weill Medical College, a fellow of the American College of Physicians, a member of the American Society of Clinical Oncology and a Distinguished Member Emeritus of the American Society of Hematology. She is also a former practicing oncologist and immunological researcher and was herself diagnosed with breast cancer in 2002.

Her book makes an invaluable contribution to our knowledge about cancer. It’s a book that caters to a lay readership and should be read by anyone who wants to understand more about something that impacts the lives of so many. While cancer has had copious exposure in books, magazines, newspapers, journals, movies, television and in recent years social media, this is the first book to conduct an in-depth examination into how shifts in public perception of cancer have evolved over time.

The first half of the book charts the course of cultural and political developments in relation to treatment, research, awareness campaigns, fund raising activities and establishment of cancer hospitals from the late nineteenth century up to the 1960s. It may be tempting to skim over parts of this section, as it’s quite dense, but it illuminates not only the evolution of attitudes but how those attitudes have influenced advances in treatment.  

One attitude that could almost be termed fixed is the tendency to portray cancer in militaristic or fighting terms, to adopt what Schattner terms a “tumoricidal mindset”, where cancer victims are seen as engaged in a battle to the death against a malignant foe. This notion gained traction early. Sword imagery was first adopted as far back as 1928 and later became widely used as a symbol in cancer crusades. It’s still evident today when someone who’s died is described as having succumbed after a long battle. Schattner suggests the bellicose trope became popular because it stimulated activism, not only among advocates but also patients, who were used to taking a passive role when it came to medical treatment. Parallels are drawn between cancer, AIDS and the Covid pandemic. In managing public health crises of any kind, Schattner observes, “balancing hype, skepticism, and legitimate optimism would challenge physicians, journalists and patients for years to come”.

Social media has provided a previously unstudied platform for addressing and sharing the challenges of cancer.  Anyone with an interest in the subject is now able to mount public conversations that, in their frankness and willingness to discuss personal experiences, would have been unheard of in the past. Cancer conversations, these days, Schattner remarks, “[have] turned from awkward to no big deal”. This new openness however has created its own problems. Contradictory information is rife, the hype and over-exposure may well be counter-productive, especially when our knee-jerk reaction in regard to a medical diagnosis is to turn to “Dr Google”.

Another, little discussed problem, Schattner notes, is that in the current climate of open access to a multitude of sources and authorities, the onus of responsibility is now shifting from the doctor to the patient. Decision making about therapies, trial medicines and experimental treatments, while reflective of the new democratisation of medicine, is complicated by the questionable nature of the information on which it’s based. Patient empowerment is a good thing, provided the patient is not misinformed.

While huge advances in treatment, mean that cancer is no longer the death sentence it once was and doctors are becoming more receptive to patient participation in treatment choices, Schattner warns that it’s too soon to be complacent. “Public understanding of cancer is at a critical juncture”. Survival rates well beyond initial prognosis are becoming common. But old attitudes of shame, fear, ignorance and prejudice persist. What is called “a perception gap” continues to compromise attitudes towards cancer and treatment options. It also encourages the circulation of myths and misleading messages. Beliefs that cancer is hereditary, contagious, incurable, shameful or a sign of divine retribution stem from the early 1920’s and still prevail, especially among the disadvantaged and underprivileged.

Perhaps nowhere more so than in the case of cancer, prevention is better than cure and a good deal less expensive. In her concluding chapter Schattner addresses the crucial question of whether cancer can in fact be prevented. Old notions that it was incurable are being refuted daily as is the idea that it can’t be prevented. Cancer screening programs for a number of cancer types have been in place for many years, although Schattner reports they aren’t considered a priority by oncologists. Contention still obscures debate over the cause of malignancies which makes it difficult to prescribe definitive methods of prevention. However, in line with advances in treatment, the science of prevention is also progressing. The economic argument for prevention is compelling and one that should weigh heavily in policy making at all levels. Prevention is far less costly than late-stage oncology care. Schattner justifiably emphasises the crucial importance of early detection, which enhances the treatability of almost all kinds of cancer. Interestingly, debates about early detection were spurred as far back as 1885 when General Ulysses S. Grant (who died from cancer) penned his book “The Personal Memoirs of U.S. Grant” which sold over 300,000 copies and highlighted the urgency of trying to prevent the disease. And yet the early detection message still goes unheeded by many. Again, as Schattner’s book makes abundantly clear, fear, misinformation and ignorance continue to hamper our best efforts to control cancer.

Coincidentally, while I was reading this book, the SBS television program “Insight” aired a discussion forum called “Outliving Your Prognosis” in which cancer survivors and doctors talked about the experience of both giving and receiving a terminal prognosis. Their testimonies reinforced the messages in Schattner’s book, in particular that new medical technologies and treatments have significantly boosted survival rates for many forms of cancer in the past three decades. The Australian Institute of Health and Welfare reports that five year survival rates for all types of cancer have increased to 70% in recent years.

As a fair-skinned person who lives in the hottest and driest State of Australia, I’m very susceptible to skin cancer. Sun exposure over many years has left my skin mapped in scars, wrinkles, blotches and other crusty outcroppings (none of which have yet proved to be malignant). Much of this is due to the youthful idiocy of lying like an oily peeled banana for hours in the sun to get a tan that I ultimately realised in my case would only ever come out of a bottle. Far too many carved out and sliced off bits of me have been left behind in doctors’ surgeries. Add to that my family history, a cancer diagnosis at some stage in the future is not improbable and the thought is not a happy one. So for me this book made enlightening reading. Schattner’s concluding statement is one of pragmatic optimism.

“As cancer becomes known in its myriad forms and grows increasingly treatable, the metaphor fails. The Dread Disease, the Emperor of All Maladies, has been transformed into a spectrum of diseases, sometimes but not always fatal. As new therapies emerge … cancer will no longer be so feared.”

Thank you to Cambridge University Press for providing me with an advance copy of the book.