More Than Survival

“What does not destroy me makes me stronger.”
-Friedrich Nietzsche

With no tongue or voice box, my patient could neither swallow nor speak. The simplest human interaction was a pantomime, and each question or comment required a laborious pencil and paper ritual. Meals involved cans of food, a tube, and a syringe. Pain was a constant companion; work was unthinkable. He had long ago accepted that there was no realistic hope of ever becoming more functional. He clearly had a permanent and unacceptably poor quality of life. I could not begin to imagine his existence.

Nevertheless, for eight years, he was one of 8.9 million US “Cancer Survivors,” representing 5% of the adult population. Three-quarters of survivors have been treated for either breast, prostate, colorectal or gynecologic cancers. Depending on cancer site and treatment, these individuals face long-term effects including early menopause, diminished cardiac function, depression, functional losses, psychosocial distress, cognitive impairment, financial ruin, intractable scar tissue and additional cancer. Currently, we have only limited abilities to predict who will be most affected.

In 1996, the National Cancer Institute’s Office of Cancer Survivorship was established to encourage study of and intervention for these patients to improve both their length and quality of survival. For example, a recent NCI-sponsored study found that a group of survivors of gynecologic cancers had better quality of life scores than a “normal” group of women who had never been treated for cancer. Another study reported that only about 15% of survivors had ever had the chance to “tell their story.” Survivorship research is exciting and expanding; next year, the NCI will announce a Cancer Research Extraordinary Opportunity that will focus on survivors.

Amazingly, my patient who could neither swallow nor speak delighted in each new day and was an inspiration to his family, to other patients, and to those of us involved in his care. He taught me that there are enormous gaps in our understanding of “Cancer Survivorship.” I hope that Medical College of Wisconsin researchers from a variety of disciplines will be at the front of the line when this research opportunity becomes available.

"Reflections" is a collection of essays by the health professionals of the Medical College of Wisconsin.