Long-Term Cancer Survivors: Our Time Has Finally Come

By Susan Leigh, RN
Cancer Survivorship Consultant

“Despite success on the treatment front, we have done very little in a concerted and well-planned fashion to investigate and address the problems of survivors. It is as if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all that we can.” —Fitzhugh Mullan, MD, 1985

Notice the date of this quote. 1985! The quote is from the seminal essay “Seasons of Survival: Reflections of a Physician with Cancer” that was printed in The New England Journal of Medicine by Dr. Fitzhugh Mullan, physician and cancer survivor. It was, in fact, one of the main driving forces behind defining and organizing a movement that gave credence to the distress of surviving cancer.

In 1986, I was one of about 25 survivors invited to Albuquerque by Dr. Mullan and Catherine Logan (now Carrillo), founder of People Living Through Cancer, to begin a dialogue about the impact of surviving cancer and to network individuals and organizations who were dealing with the emotional, social and existential issues of life beyond cancer and its treatment.

We consequently created the National Coalition for Cancer Survivorship (NCCS, www.canceradvocacy.org) and defined the continuum of survival as not only living WITH cancer, but also living THROUGH and BEYOND cancer (yes, this was first described decades ago by NCCS) in order to illustrate the lifelong impact this disease had on us. Survival is not just about being cured or having completed treatment.

As more and more survivors lived longer and, indeed, recovered from cancer, we wondered when adult oncology providers would adapt models of follow-up and surveillance that were commonly seen in pediatric oncology. (Childhood and adolescent survivors receive follow-up indefinitely.) These young people and their families were offered periodic guidance to help them deal with the aftermath of cancer and its treatment.

Indeed, recurrence of disease or the development of other cancers was monitored in pediatric patients, but healthcare teams also identified psychological distress, cognitive problems, infertility, insurance and work discrimination. They saw life after cancer as multidimensional for these young survivors.

But this was not the case with adult survivors. So, in 1996, NCCS published Imperatives for Quality Cancer Care: Access, Advocacy, Action & Accountability. A major concern identified in this publication was the need for healthcare guidelines and continued long-term follow-up for all cancer survivors. Soon after, the Office of Cancer Survivorship was established at the National Cancer Institute, thus increasing awareness about the need for research surrounding survivorship in general and long-term survival more specifically. More recently, the Lance Armstrong Foundation launched Live Strong (www.livestrong.org) with information focusing exclusively on survivors who have finished treatment.

Here are more examples of increasing interest:

• In 2003, the Institute of Medicine published Childhood Cancer Survivorship: Improving Care and Quality of Life. A report on adult survivors is due in 2005.
• In the 2003-2004 annual report, the President’s Cancer Panel published Living Beyond Cancer: Finding a New Balance. Recommendations to alleviate the severe burdens of survival were offered to the president.
• In 2004, the Centers for Disease Control and Prevention and the Lance Armstrong Foundation published A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Survivorship is now moving from the clinic to the public health arena.
• In early 2005, the American Society of Clinical Oncology has invited a group of interested oncologists to look at developing guidelines for long-term survival.
  4A number of comprehensive cancer centers are now developing adult survivor clinics.

As a 33-year survivor of multiple cancers, I am gratified to know that long-term survival is finally a hot topic. And to all my fellow survivors who yearn to be taken seriously, I can only say: Our time has finally come.

For additional survivorship resources, visit www.acor.org.