After five days of chemotherapy, 15 radiation treatments and finally a resection surgery of the middle and lower portions of her right lung, Joanne Potts heard the magic words: there was no evidence of cancer left in her body.
“It felt great to hear that,” she says. Her surgery occurred four months after Potts, a 67-year-old from Philadelphia, had begun treatment for stage 3a lung cancer. “I remember calling my dad and crying, and he was crying, and we were all crying.”
A new journey was just beginning for Potts, however. For the next year, she had chest X-rays and bloodwork every three months to check for recurrence of the cancer. In the second year, she went every four months, and each time she experienced “scanxiety” before her appointments.
“About a month leading up to a scan, a feeling of dread would seem to flood my mind,” she says. “When I go and get the scan and find nothing, I feel I’ve worried for nothing, but I just think that’s part of the cancer experience. I don’t know if it will ever leave. Every time you get an ache or pain, you fear, ‘Oh my God, has the cancer returned?’”
Nearly all cancer survivors live with a fear of recurrence, says Mary Ann Burg, a professor in the School of Social Work at the University of Central Florida. “Regardless of the type of cancer or the treatment or how far out they are from treatment, how long they are a survivor, the fear resonates for everyone who’s had cancer, often for the rest of their lives,” she says. “The idea that you’ve survived the cancer and you’re past it is kind of a myth we have in our society.”
JOANNE POTTS discovered one of the challenges of surviving cancer when she found that undergoing scans to check for recurrence caused her anxiety. [PHOTO BY PARIKHA MEHTA]
For Potts, the intensity of the anxiety has diminished since her surgery in late 2012, but fear of recurrence does not always decline with time, nor does it correlate with a person’s actual risk of recurrence, says Susan Krigel, a clinical psychologist with the Midwest Cancer Alliance in Kansas City, Kansas.
“You can’t tell someone, ‘I don’t think you have to worry about this,’ because realistically you do. But a high level of fear of recurrence can really impair people’s quality of life,” Krigel says. “It is helpful to find a balance, to acknowledge that there is some level of risk and that your fear may spike at times.” Those spikes may occur around anniversaries of a diagnosis or surgery, before or during follow-up appointments or when a survivor hears about the death of a friend or celebrity from cancer, Krigel says. But finding that balance can help a person reap the benefits of their fears without letting them take over.
“Fear of recurrence can actually be helpful in some ways,” Krigel says. “It can actually motivate people to follow recommendations regarding follow-up care, such as screenings, medications, diet, exercise and quitting smoking.”
But if anxiety becomes overwhelming, it can reduce a person’s quality of life and affect their psychological and physical well-being, she adds. “Someone may be so fearful of recurrence that they’re not attending to other aspects of their health or following their doctor’s advice to exercise regularly or eat more healthily,” Krigel says. “They’re so fearful that they’re frozen in their existing pattern.”
Knowing What to Expect
One way to manage concerns about recurrence is to ask questions, including what symptoms to watch for and what tests to have done, according to N. Lynn Henry, an associate professor of oncology and hematology at the University of Michigan Comprehensive Cancer Center.
“The period surrounding diagnosis and initial treatment tends to be a whirlwind, and some of those more basic questions get lost,” Henry says. “Once everything settles down and they’re entering a period of calm, it’s very important that they know what to look for and what to expect.”
Generally, she says, anything out of the ordinary or concerning that does not have a good explanation and does not go away is a reason to call the doctor, such as a new headache, a persistent cough, unintentional weight loss, a new rash that does not improve or bone pain. Survivors can call their primary care doctors or their oncologists, whom they typically continue to see for about five years after being declared free of disease.
Beyond that, survivors should work with their doctors to develop and follow a more structured follow-up plan.
“In theory, oncologists will be providing patients with a survivorship care plan, but few patients are receiving it currently,” Henry says. The goal is for oncologists to summarize everything about a patient’s intended care for the patient and his or her primary care doctor, including tests, follow-ups and any increased risk factors related to the particular cancer treatment received.
There are many factors that influence the chance of recurrence over time, so the routine for monitoring varies significantly for different types of cancers. Most people return for check-ups every three months initially and then go less often as they approach the fifth year, but how often they go and what tests they undergo depend on their cancer type, the stage of their original tumor and the guidelines the doctor is following. Tests might include blood tests (which look for proteins shed by a tumor into the blood), bone scans, X-rays, CT scans or PET scans, but these are becoming increasingly less common as researchers learn about their value, or lack thereof.“For many tumor types, we don’t routinely do imaging tests or blood tests to see if the cancer has returned because it hasn’t been shown to extend a person’s life,” Henry says. “More tests can be harmful from an anxiety and quality-of-life point of view and from a radiation exposure standpoint. Also, if abnormalities are found that lead to invasive procedures, that can increase the risk, even though the findings turn out to be nothing much of the time.”
Less Is More
A paper that reviewed many studies spanning several decades on the subject of cancer surveillance and outcomes found that, in many cases, more follow-up testing does not necessarily lead to more survival. This is particularly true in cancers that aren’t likely to have effective treatments if they recur, but the benefits of intensive surveillance are murky even in cancers that boast potentially effective treatments in the face of recurrence, according to the 2013 paper that appeared in the Journal of Clinical Oncology
“The likelihood that you’ll be saved or have your life prolonged depends less on the timing of this discovery than on the efficacy of the treatment that we can bring to bear on the cancer when we find it again,” says one of the paper’s authors, Giles Whalen, a professor of surgery and chief of surgical oncology and endocrine surgery at UMass Memorial Medical Center in Worcester, Massachusetts. For example, with a cancer such as pancreatic, which has few effective therapeutic options, scans every three months could not only fail to prolong survival but also lead a person to spend time on their illness unnecessarily, “robbing them of the time they could feel better and be living their lives as people, rather than patients,” he says.
Even in breast cancer, where surveillance testing may make more of a difference to long-term outcomes, oncologists tend to rely strictly on mammograms and physical examination to look for early recurrences before they are symptomatic, declining to scan for distant metastases because they are less curable and surveillance hasn’t proved to boost survival in such cases, according to a 2014 paper in the Journal of Cancer
Patients with colorectal cancer, too, may benefit from surveillance due to the availability of treatments if recurrences are found, and thus tend to undergo regular imaging and bloodwork after treatment. But for most cancer survivors, a better use of follow-up appointments is to focus on how they are feeling, negative effects from their cancer treatment and any post-traumatic stress symptoms they may be experiencing. Beyond that, many cancer survivors are at higher risk for other cancers and should be following standard screening recommendations for those, such as getting their mammograms and colonoscopies. Whalen suggests that patients ask their oncologists, “How often do I need to be checked, and what are you checking for?” That opens the door to a conversation about how much testing is actually needed.
“The best thing to do is to ask your doctor for the range of what she or he recommends for monitoring cancer recurrence and express whether the lower or upper range would work best for you,” says Alyson Moadel-Robblee, director of psychosocial oncology at Montefiore Einstein Center for Cancer Care in New York. “If you know that you often avoid things that make you uncomfortable, tell your doctor, as she or he would rather you come less frequently than not at all and will likely be willing to work with you. If you are hypervigilant in your cancer care, ask your doctor how you can participate in your own health care and monitoring that may not require additional appointments.” In fact, it was vigilance, not testing, that led Tim Jones, a licensed social worker who asked to be identified by a pseudonym, to find a recurrence of his own cutaneous T-cell lymphoma, a type of non-Hodgkin lymphoma, which had been diagnosed in December 2012. Over the year and a half after he’d completed radiation treatments, he went for check-ups every three to six months. Meanwhile, he checked his abdominal and chest region for anything unusual three or four times a week on his own. That’s how he found a suspicious lump identical to the first one he’d had, and he made an appointment right away.
“I immediately felt the rug pulled out from under me,” Jones says. “I felt more disappointment and sadness, but there wasn’t the sense of doom I felt the first time.” Radiation treatments killed the cancer once more — until another recurrence in February 2015. This time he felt anger — though still no sense of fatality. Following surgery, a PET scan revealed no evidence of cancer, but more recently he experienced another recurrence and planned to undergo radiation.
During his recent remission, Jones developed tactics that helped him keep calm — “seeing my therapist, using anti-anxiety medications as needed and planning enjoyable down time for myself,” he says. He also scheduled times to palpate his body so he was not always thinking about it. “There are times I needed to let that go and make sure I didn’t become obsessive, touching to see if there were any growths,” he says. What also helped was focusing on other ways to stay healthy, such as eating even more healthfully than he had.
Focus on Wellness
The most valuable thing survivors can do to reduce their risks of cancer recurring is to maintain a healthy lifestyle, Henry says. That means eating a healthy, well-balanced diet, maintaining a normal body weight, exercising regularly, not smoking and not drinking too much alcohol.
According to the American Cancer Society, studies have shown that many of these measures make a meaningful difference when it comes to preventing cancer recurrence. Alcohol intake has been linked to recurrences of mouth, throat, liver and breast cancers, among others; obesity raises recurrence risk and decreases survival odds in many cancer types; and links have been found between exercise, recurrence prevention and longer life following breast, colorectal, prostate and ovarian cancers, although more research is needed. Smoking by lung cancer survivors increases their risk of recurrence by 1 percent for each pack of cigarettes they smoke in a year, according to a study reported in May at the annual meeting of the American Thoracic Society.
“If you’ve had cancer and you’ve been rendered free of disease, your privilege is to try to live your life as healthily as you can and to enjoy life as much as you can,” Whalen says. In fact, primary care doctors might play a bigger role here because they look at patients holistically, keeping an eye on blood pressure and other indicators of health — which, if overlooked, could decrease longevity — instead of focusing solely on the possible return of cancer. Patients can do the same.
“Try to turn the focus from vigilance of internal sensations to more on wellness,” Krigel says. “Work toward health with improved diet and exercise.”
But focusing on wellness does not mean you have to be a Pollyanna — and feeling like Eeyore does not mean bringing cancer back.
“There is no study that confirms that a patient’s attitude affects actual cancer outcomes,” Burg says. “There are plenty of data from psychoneuroimmunology research that emotions affect the immune system, and to some degree the immune system may affect cancer recurrence, but there is a lot of randomness in what happens at the cellular level. People want to be able to control what happens to them, and you just can’t.”
What individuals can control is how they respond to their fears. Potts credits support groups and regular meditation with helping her manage hers. Leading up to appointments, she sends requests for support to her “prayer warriors” and uses guided meditations from YouTube each evening.
“Cancer affects mind, body and spirit, so ask your medical team about available support groups, counseling, peer support, health education and spiritual support should you feel you may need them,” Moadel-Robblee says.
Then, recognize the reality of your new normal, Krigel suggests.
“It’s important to learn to live with uncertainty,” Krigel says. “Everyone has uncertainty in their lives, and if you spend a lot of time trying to control things that you don’t have control of, then it’s going to suck the joy out of your life.”C