Kenneth D. Miller, MD

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 

: 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:

 The period when a person is diagnosed and treated.

 The difficult time when celebration is blended with worry and loss as a patient pulls away from the treatment team.

 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.

 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.

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Men and women treated with chemotherapy sometimes report that they suffer from “chemobrain” or “chemofog,” an effect doctors refer to as “chemotherapy-induced neurocognitive impairment.” Much of the research in chemobrain has been in women treated for breast cancer. In fact, about 20 to 30 percent of patients report some problems with word finding, short-term memory, multitasking, learning new skills, processing complex information and concentration.

Symptoms may be minor or more serious and on a day-to-day basis most women can perform their regular work activities, though it may be more difficult. Cognitive changes may not be obvious to others since some women are good at adapting to a reduced memory, including writing things down and keeping to a tight schedule. For many, cognitive changes are a temporary mild annoyance, while for others, the long-lasting debilitating condition may prevent return to work and normal functioning.

When a woman complains of chemobrain, doctors look for other factors that may be contributing to the problem, including anemia, thyroid problems, sleep disorders, anxiety, depression, menopausal symptoms, and medications. Since some of these factors can influence cognitive testing results, researchers have had difficulty fully understanding the biology behind chemobrain. Nonetheless, it appears certain types of chemotherapy can indeed directly affect the brain.

In 2006, researchers used PET scans to measure brain metabolism in patients receiving chemotherapy. In patients who noted neurocognitive symptoms, the resting brain metabolism rate was lower than for patients who did not have symptoms. Researchers also noted that when patients with symptoms performed complex tasks there was a large increase in blood flow to certain parts of the brain, suggesting those chemotherapy patients worked harder than control subjects to recall the same information.

Developing interventions to alleviate these problems is very important. For many patients, the neurocognitive changes gradually improve over time, so strategies to compensate for the temporary deficits can be helpful. As suggested by the Mayo Clinic, these include:

 >Use (electronic) calendars to record appointments

 >Do crossword puzzles and Sudoku squares to keep the mind sharp

There is very limited information on pharmacologic interventions, but some of the psychostimulants, such as Ritalin (methylphenidate) and Provigil (modafinil), are being evaluated.

The number of cancer survivors continues to grow as cancer patients are treated more aggressively. Some are receiving more chemotherapy, higher dosages, and new chemotherapeutic agents. The neurologic complications of cancer chemotherapy are likely to become more complex.

The recognition and treatment of chemotherapy-induced neurotoxicity will become a frequent and important clinical problem. Clinicians face many challenges, including attempting to minimize neurocognitive side effects of treatment without sacrificing efficacy, gaining a better understanding of the pathogenesis of neurocognitive changes, and providing rehabilitative services to patients, to optimize quality of life.

—Cara A. Miller, graduate student at Gallaudet University, contributed to this article. Kenneth D. Miller, MD, is assistant professor of medicine at Yale School of Medicine, editor of Choices in Breast Cancer Treatment: Medical Specialists and Cancer Survivors Tell You What You Need to Know (Johns Hopkins Press, 2008), and director of the Connecticut Challenge Survivorship Clinic and the supportive care program at Yale Cancer Center.

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