Living with Uncertainty
Fear of recurrence creates unknown fate for cancer survivors.

By Melissa Weber

She sat quietly in the cool waiting room, happy to be out of the 100-degree Nevada heat. As patients came and went, she became a background fixture listening to the day’s chatter. The staff behind the reception counter debated who would make more coffee and Judge Mathis laid down the law on the waiting room television. It’s not the first time she’s been there. But after two recurrences, Sandra Jackson can’t help but worry.

“I laughed at the guests [on Judge Mathis] for the nonsense they were arguing over. I’m here to see if I’ll lose my other breast and they’re arguing over clothes.”

Jackson, 55, was first diagnosed with breast cancer in 1993 and again in 1997 with a diagnosis of lung cancer in 1995. As she waited for her name to be called for her most recent mammogram, she says her mind wandered back to the mammogram that revealed her first malignancy.

“I visualized the cud-like pictures of my left breast and hearing the doctor’s words, ‘I’m sorry, you have breast cancer.’ I felt like a foreigner not speaking the language.”

Many cancer survivors have felt that uncertainty, that anxiety arising from a worry—warranted or not—that the disease has returned.

Despite its enduring presence among survivors and its recognition as an important issue by the medical community, little in-depth research exists on fear of recurrence. But as the number of survivors soars to 10 million, many have become activists, demanding not just first-rate medical care but also recognition and management of the physical and emotional fallout from cancer and its treatments.

Memorial Sloan-Kettering Cancer Center recently created the Cancer Survivorship Program to address these issues. Leading the way is director Mary McCabe, RN, who says survivorship research has become a newly appreciated field of oncology. “We’ve been looking at issues and we need to develop interventions. We’re beginning to understand fear of recurrence much more clearly as a psychological issue in patients as they try to move beyond treatment.”

While patients undergoing treatment worry if their treatment strategy will be effective and eradicate the disease, the fear of recurrence manifests itself at the completion of therapy when, after an extended period of treatment, “boom, it’s done,” says Julia Rowland, PhD, director of the National Cancer Institute’s Office of Cancer Survivorship. “You have the loss of a supportive environment you can go back to, people who know what you’re going through, who can answer questions, and then there’s a free fall, a void that many patients describe.”

McCabe says although it may never go away, fear of recurrence diminishes over time “the more you have a positive experience of being a survivor and well person.”

Jackson manages her fear by learning to “live and let live,” she says. “I have a hobby that I truly believe has kept me alive and that is riding my motorcycle. When I was first diagnosed, I would look at it and say, ‘I’ll ride again.’” She also started a nonprofit organization called Courage Unlimited, Inc., which provides education and support to those facing cancer, HIV/AIDS and other illnesses.

Managing fear becomes essential when external stimuli, known as triggers, feed anxiety. Some common triggers include a relative or friend being diagnosed, media coverage of cancer and follow-up appointments, as was the case for Jackson.

“Follow-up visits can bring the fear home once again,” says McCabe. “Having to revisit those emotions can sometimes cause survivors to avoid follow-up testing. But for others, the fear becomes an activator. They come to really look at proper diet and having a healthy lifestyle.”

McCabe says healthcare professionals need to do a better job of minimizing the anxiety in a practical sense in the clinic. Knowing how difficult it is for individuals to come in for a follow-up visit, there needs to be a supportive environment and care concerning timely test results so the patient doesn’t have to worry about it over a matter of days.

Merle Mishel, RN, PhD, professor of nursing at the University of North Carolina at Chapel Hill, and her colleagues at UNC’s Managing Uncertainty in Cancer (MUIC) program conducted a randomized study of 244 long-term breast cancer survivors and identified some of the most common anxiety triggers.

Hearing about someone else’s cancer kindled fear in roughly eight out of 10 women. A more common trigger—88 percent—involved aches and pains previously associated with cancer. MUIC researchers also identified helpful coping strategies, such as calming self-statements, imagery and distraction.

But for survivors who experience constant worry that impacts sleep, appetite and daily life, McCabe recommends psychological services. “This is a minority of people, but we don’t want them to fall through the cracks.”

Important for all survivors is to talk to family, friends, doctors or nurses about their fear. Even writing in a journal provides the setting for a personal monologue in which issues behind the fear can be explored as well as ways to overcome the fear.

Scientists can’t precisely identify cancers most likely to return, Dr. Rowland says. Typically, patients who had complete surgical removal of their tumor or those with early-stage, nonaggressive tumors are less likely to have their cancer recur. Although for most cancers, the usual standard of “cure” is five disease-free years, breast cancer “is an unusual tumor in that it can come back decades later—in part because there are two organs,” Dr. Rowland says. But options exist for reducing the risk of breast cancer recurrence, including treatment with Nolvadex® (tamoxifen) and aromatase inhibitors.

One reason for the lack of precision in predicting recurrence is skimpy data, says Eric Miller, a spokesman for the American Cancer Society. The state cancer registries that collect the primary statistics frequently cannot identify whether a particular diagnosis is a recurrence or a first cancer. What’s more, Miller adds, until recently there haven’t been enough survivors to make those numbers significant.

Jackson’s not shy about pointing out her statistical contribution. “I have been blessed to survive cancer three times,” she says. “And yes, I’m afraid of a recurrence, but I am going to die from something. I hope by then I’ll have seen everything I wanted to see and have traveled the country riding my motorcycle.”
Jackson’s test results are back. It has been seven years since her most recent recurrence. That number will continue to rise. She’s cancer-free.

—John Milne contributed to this article.