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Applying new wisdom to the phases of survivorship.
When Fitzhugh Mullan, MD, started having chest pain, he ordered a chest X-ray for himself. He “recoiled” when he immediately recognized a mass that proved to be malignant.
Following the diagnosis he wrote, “I was, in fact, surviving, struggling physically and mentally with the cancer, the therapy, and the large-scale disruption of my life. Survival, however, was not one condition, but many. It was desperate days of nausea and depression. It was elation at the birth of a daughter in the midst of the treatment. It was the anxiety of waiting for my monthly chest film to be taken and lying awake nights feeling for lymph nodes. … It was survival, an absolutely predictable but ill-defined condition that all cancer patients pass through as they struggle with their illness.”
In 1985, Mullan described three phases of cancer survivorship in The New England Journal of Medicine: acute survivorship (diagnosis and treatment); extended survivorship (post-treatment); and permanent survivorship (long-term survivorship).
Many things have changed during the 20 years since Mullan described the “seasons of survival.” Earlier diagnosis and better treatment have resulted in more people living through and beyond cancer, and more are able to live with cancer as a chronic disease. And although the intensity of treatment may result in an improved chance of survival, it can leave some survivors with late and long-term side effects.
In 2009 cancer survivors are a diverse group, and the seasons of survivorship are more complex. I suggest we add a new phase to address the transition period and take a fresh look at extended and permanent survivorship. The seasons for today’s survivor include:
1) Acute survivorship: The period when a person is diagnosed and treated.
2) Transitional survivorship: The difficult time when celebration is blended with worry and loss as a patient pulls away from the treatment team.
3) Extended survivorship: This is a varied group of patients, including those who are living with cancer as a chronic disease and individuals in remission because of ongoing treatment.
4) Permanent survivorship: Once a person enters this phase, they may be one of a large number of people who are in remission and asymptomatic. Or, they may be cancer-free but not free of cancer because of chronic late and long-term health or psychosocial problems. Others may even develop secondary cancers related to cancer treatment, or develop second cancers not related to the first cancer or its treatment.
Long-term cancer survivorship is usually the most central goal of care, but clinicians and patients must be cognizant of each season of survivorship. For instance, events during acute survivorship may increase the risk of post-traumatic stress syndrome later, and specific interventions may improve long-term adjustment and coping. Survivors may benefit from interventions to reduce confusion and fear during the transition phase that might otherwise delay reintegration into their life. For survivors in the permanent phase, medical problems that can develop as complications of cancer treatment may be amenable to early and ongoing intervention, thus improving the long-term health of patients.
I have learned just as much about cancer and the seasons of survivorship in my work as a medical oncologist as I have alongside my wife, Joan, who was treated 10 years ago for acute leukemia and more recently for breast cancer. Her diagnosis was certainly like the cold, bleak winter, and transition like the rebirth of spring. And while each season was different than the others, each was beautiful in its own way.
—Kenneth Miller, MD, is director of the Lance Armstrong Foundation Cancer Survivorship Program at Dana-Farber Cancer Institute in Boston.