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When an apple a day can’t keep worry away. Understanding the persistence of follow-up fears by Beth Leibson
20 | Amoena Life
usan, a New York-based writer, finished with breast cancer treatment six years ago. Since then, life has returned to normal. That is, until she has to go see her doctor for a check-up, which she does about every three months. “I have my next appointment on the 25th, so I won’t start worrying about it full-scale until the first,” she explains. “But I know that it’s not going to be a productive month.” She worries about what her doctor will find. Susan isn’t alone in her concerns, explains Elissa Bantug, Project Coordinator of the Breast Cancer Survivorship Program at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center and herself a two-time breast cancer survivor. “Studies show that upwards of 80% of survivors worry about recurrence,” she adds. “For some women, these worries can be so strong that they impact their treatment decisions, symptom reporting and screening behaviours and overall quality of life,” says Nancy K. Janz, Ph.D., professor of health behaviour and health education at the University of Michigan School of Public Health and researcher at the University of Michigan Comprehensive Cancer Center. Recurrence isn’t the only concern. Some survivors worry about getting another type of cancer, feel like they’re losing control just when they were getting back into the driver’s seat of their lives, or simply remember the nausea of chemotherapy and feel their stomachs clench just by walking over the threshold of the hospital door. These feelings can take a toll. For some survivors, simply seeing a doctor’s appointment loom in their diary might lead to difficulty sleeping, poor appetite, mood swings or increased aches and pains, according to Cancer Council Victoria, a Melbourne, Australia-based nonprofit involved in cancer research, support and advocacy. And, to some extent thanks to improved treatment, more and more people face these challenges. In the 1970s, less than 50% of people with cancer lived five years or more after diagnosis. These days, close to 70% of people with cancer live at least five years—and, partly as a result, the number of survivors has grown to about 12 million, according to
CancerCare, a New York-based cancer support organisation. Not all cancer survivors have the same check-up schedule. The frequency of follow-up appointments varies by the type of cancer, the treatment received and the survivor’s overall health. And different doctors take the reins of post-treatment follow-up. Some women see their breast surgeons while others check in with their oncologists, gynecologists or even their internists. Some survivors are even followed by several physicians, such as an oncologist and a surgeon. Whoever is overseeing the process, though, people usually go back every three to four months during the first few years and then once or twice a year after that, according to the National Cancer Institute. Some of these appointments just involve physical examinations and check-ins; others may require bloodwork, imaging (such as mammograms or sonograms), or other tests. When the Calendar Makes You Nervous
Ann Fry, who finished breast cancer treatment about two and a half years ago, thought she would get calmer as time went on. She has found, unfortunately, that she has not. “I wasn’t so nervous at the beginning,” she says, explaining that she figured she was done with treatment and, therefore, done with cancer. But when she went for her two-year check-up, the doctor found a few suspicious spots; two turned out to be nothing, but the third was precancerous, and Fry ended up with a lumpectomy. She is less confident that her cancer story is over. “Now, when I look at the calendar and see that I have an appointment with the doctor in a few days, I feel a twinge,” says Fry, who holds an MSW and is founder of iamathriver.com, a website geared to survivors. “On the subway on the way to the appointment, I’m nervous that the doctor is going to see something new.” “Coming back from a life-threatening illness can be very hard, very traumatic,” agrees Bantug, speaking from personal experience. As a runner, she used to worry post-treatment whenever her legs felt sore, even though she knew it was more likely to be shin splints than tumours. Over time, though, she has become more secure in her health – and determined to help other patients find their ‘new normal.’
How much women worry about recurrence is often not aligned with their actual risk for cancer recurrence. When Bantug was going through diagnosis and treatment, she felt as though she had to fight every step of the way; she became an advocate for women living with breast cancer as a result of her experiences. She wants to try to make it easier for others. “You can point out that if someone spends a lot of time worrying about cancer that either they won’t have cancer—in which case they’ve spent a lot of time worrying for no reason—or they will have cancer—and they still wasted all that time,” Bantug reasons. “But you can’t just tell someone to stop worrying.” It simply won’t work. “It’s a matter of finding the right way to do it, finding something that works in your life, a way that is culturally sensitive and meaningful.” So—to reference writer and professional optimist Dale Carnegie— how do you stop worrying and start living? First of all, experts agree, it is important to get good information. Researchers at the University of Michigan Comprehensive Cancer Center found that women who report understanding the information about their disease and treatment better, women who receive more help with their symptoms, and those who have more coordinated care are less likely to worry about recurrence than women who lack these resources. Being Proactive Helps
Beyond gaining information, Bantug emphasises healthy living. “Get active and stay active,” she exhorts cancer survivors. “Eat healthy and don’t smoke.” Knowing that you’re doing everything you can to keep cancer at bay can help alleviate some of the fear, she explains. Speaking as a healthcare provider as well as a survivor, Bantug explains that Amoena Life | 21