Keith Bellizzi remembers that day in the hospital well. Not long before, his goal had been to make lots of money in business, and he was on the way to doing it. Then, at 24, he was diagnosed with kidney and testicular cancer.
“It redefined who I was as a person, and it gave me a purpose in life,” he said.
That day, sitting in the hospital bed after he finished his final course of chemotherapy, Bellizzi told his parents and girlfriend, “If I beat this, I’m going to quit my job and dedicate my life to cancer survivorship research.”
And he did. More than 15 years later, after returning to school and earning several degrees including a PhD (and marrying his girlfriend), Bellizzi is a professor of human development and family studies at the University of Connecticut, pursuing research into the experiences of cancer survivors and their families.
“I recognized a need for understanding the psychosocial aspects of the cancer experience,” he said. “One of the most difficult challenges for me was figuring out what to do once treatment was over. Most survivors, including myself, feel as if we are thrown back out into the world to figure things out on our own. And that was frightening.”
The field of survivorship is relatively new, in part because the idea that cancer is survivable is too. In 1971, the year Richard Nixon declared war on cancer, there were 3 million survivors in the United States. Most psychological efforts were aimed at helping patients deal with dying and supporting their families.
By 2007, there were 11.7 million cancer survivors, including more than a million who had been alive 25 or more years after diagnosis. Because cancer occurs most often in people over 65, the number of cancer survivors is likely to grow exponentially as the population ages, said Bellizzi, who has written about the need for more research on the health care needs of older cancer survivors.
Survivorship research includes work on medical issues and the psychological and social aspects of cancer that go beyond the disease itself. Survivors can be at risk for health problems later in life stemming from cancer treatment, and it’s not clear which doctors should be responsible for addressing their unique needs. The illness can have lasting psychological effects–both positive and negative.
“The best thing that’s ever happened to me”
Bellizzi is interested in what life is like after cancer treatment, in survivors’ quality of life, the life changes they go through, and the effects on their relationships. His research includes looking at the effect cancer has on families, survivors’ fear of recurrence, cancer and aging, and why some survivors, like him, draw positive experiences from facing a life-threatening disease.
Dr. Andrew L. Salner, a radiation oncologist, said it’s not uncommon for patients to say, “Cancer’s the best thing that’s ever happened to me.”
It “hits you right between the eyes when somebody says that, and you think, ‘What the heck are you possibly talking about?'” said Salner, director of the Helen and Harry Gray Cancer Center at Hartford Hospital.
Patients explain: Cancer was a crisis. It forced me to go through some difficult soul-searching, to look back and ask what have I really accomplished, what have my priorities been?
Bellizzi said the responses are consistent with life changes reported by survivors of other traumas, like natural disasters and sexual assault. “What we find is that people seem to be able to find something positive in a seemingly negative event,” he said.
In a study Bellizzi led involving survivors of non-Hodgkin’s lymphoma, 77 percent reported at least one positive change and 78 percent reported at least one negative change. The most commonly reported positive changes involved relationships with family and friends, and religious or spiritual beliefs, while the most commonly reported negative changes involved their work life or career, financial situation or sex life. Thirty-six percent reported a positive change in their ability to enjoy life, while 26 percent reported a negative change in it.
It’s not entirely clear why some people can draw positive experiences from situations that devastate others, but Bellizzi’s study found that people with social support had more positive changes. Older age was associated with lower levels of change, positive or negative.
Other research has found that people who talk about their experiences with others tend to report higher levels of growth experiences. “Just having someone to talk with seems to be highly predictive of these positive life changes,” Bellizzi said.
There have been fewer studies of the effects cancer has on a patient’s family members, particularly children. Bellizzi and Salner are working on a study involving people with colorectal cancer and their families. “Within a family, it is common for different family members to have very different experiences of cancer, including feelings of distress and fear to positive growth, particularly in relationships with others and appreciation for life,” Bellizzi said.
Pulling the rug out
Bellizzi’s experience of feeling lost after treatment wasn’t unique. When treatment ends, you might think patients would be at their happiest, Salner said.
“It’s probably one of the most traumatic times for them in the whole cancer journey,” said Salner, whose main research focus is now survivorship. “And it’s traumatic because we’ve really pulled the rug out from under them, in a way.”
The routine of frequent treatment appointments stops. Many patients get used to being told what to do by doctors, then have to get used to making their own decisions again. Doctors can try to empower patients during the treatment process, “but in all fairness, we really have taken a lot of control away from them,” Salner said. The question is how to help them feel they have control again.
Hartford Hospital has a program for people finishing cancer treatment that includes a support group, yoga, tai chi, and stress reduction techniques. As part of a grant from the Lance Armstrong Foundation, the hospital also gives breast cancer patients finishing treatment a treatment summary that includes information on the types of radiation, chemotherapy, hormones or other treatment they received, as well as a description of the monitoring they need going forward, potential late health effects, and a wellness plan. It will soon be expanded to patients with other cancers.
“I think there’s a growing appreciation that it’s not over when treatment is over, that in fact survivors have persistent problems related to their cancer experience,” said Julia Rowland, director of the National Cancer Institute’s Office of Cancer Survivorship.
Rowland and Bellizzi have described survivorship research as in its adolescence. And like any adolescent, Rowland said, it’s going through some redefinition. For instance, who counts as a survivor? Is it just the patient, or his or her family too? Is it only those who finish treatment, or anyone who has been diagnosed? What about patients whose cancer has become essentially a chronic illness?
One gap in the research that needs more work, Rowland said, is on cancer and aging–an area that Bellizzi has also been trying to draw attention to. Rowland said it’s important to consider whether seniors are being excluded from cancer trials when they’re likely to be the group most commonly treated.
Bellizzi believes he was able to draw something positive from his experience in part because he was young. It also helped that he was optimistic, although on some days, he was sad, angry or frustrated. But he tried to take care of himself. He knew that after chemotherapy, he would be at risk of various late health effects, including stroke, lymphoma and heart problems. Studies have shown that exercise and a healthy diet can reduce the risk of late health effects, and Bellizzi said he decided to take control of his health.
It also helped, he said, that he was “still thinking I was immortal.”
“I wasn’t going to let cancer beat me,” he said.