Cancer series can direct focus to what's important

By Catherine L. Ormerod

When PBS's three-part documentary based on Siddhartha Mukherjee's The Emperor of All Maladies: A Biography of Cancer debuts tonight, the public will get to know cancer as a shadowy and deviously brilliant historical figure that has been killing and maiming men, women, and children since the beginning of recorded history. Understanding and finding cures for cancer has obsessed generations of healers, scientists, fund-raisers, politicians, and entrepreneurs.

As a patient advocate and someone who has watched cancer steal and forever change the lives of family and friends, I hope the film will help redirect some of today's damaging conversations about, for example, which cancers are "better" to have and whether people with cancer ought to share the graphic details of their experiences publicly. Such conversations distract us from where we should be focused: on promoting research while showing compassion for all people going through treatment and its short- and long-term consequences.

While other diseases, such as typhoid and tuberculosis, have been controlled or cured by hygiene and sanitation, Mukherjee notes that cancer has been elusive because its processes are locked in our genes and in the complex interplay of genes and their environment. Progress, while very real, has been relatively slow and uneven. As we now know, cancer can't be cured in one fell swoop. Cancer is personal.

In that vein, I hope the series will promote awareness of just how individual the cancer experience is, even among those who have the same type of cancer. Some women with breast cancer can benefit from relatively straightforward treatments that do not disrupt their relationships or work. Others undergo lengthy and debilitating therapies whose effects prevent them from functioning in their daily lives. In addition, individuals react differently to the same treatments, some suffering life-altering pain from anti-estrogen therapy, for example, while others go about their routines.

For most people, cancer is also an emotional challenge. Women with noninvasive stage 0 breast cancers - forms we now treat as life-threatening because we can't accurately predict whether they will become so - can be consumed with worry and indecision about whether or how to address them. And people living with metastatic or stage 4 cancer - cancer that can be treated but not cured - often feel isolated from the mainstream conversation because the disease will eventually take their lives. Still others suffer the angst of financial hardship and concern about continued access to health insurance.

Because of all these variations in the cancer experience, many advocates have begun providing access to support that focuses on precise situations. Specialized content and gatherings are tailored to the experiences of women who are "metastatic" or "triple-negative" or premenopausal or who have hereditary mutations, enabling them to share their experiences and support each other.

Sometimes these conversations are uncomfortable or misunderstood. Lisa Bonchek Adams, the prominent blogger who died this month at 45 after living with metastatic breast cancer, became the focus of controversy last year when some journalists questioned the propriety of her being so public with her struggles. But for her 15,000 Facebook followers, Adams was a lifeline, giving validation and voice to their experiences.

To write the epitaph for cancer, we need to give our full support both to those devoted to the science and to those living today's cancer story. The history of cancer is one of suffering; but until the last chapter is written, we all have the power to bring compassion to the millions who experience it in their own individual ways.