"When patients are approaching the end of care, it's normal to experience some anxiety."

Even when patients may be finished with acute cancer treatment and their oncologist gives an encouraging nod regarding their health, they often experience trauma and stress as they ease back into life. This stress is often a combination of anxiety, panic, fear, uncertainty, and resentment.

 “When patients are approaching the end of care, it's normal to experience some anxiety about this,” according to Teresa Deshields, PhD, who is the manager of psycho-oncology services at Siteman Cancer Center at Barnes-Jewish Hospital in St. Louis and is also a Clinical Assistant Professor of Medicine at the Washington University School of Medicine. “Perhaps knowing this is normal is enough for most people, but some may need help getting through the transition out of active care.”

Turn to Others

Dr. Deshields suggests counseling support may be needed to get over this hurdle. “Some patients will find it helpful to stagger their follow-up appointments with their medical team so that they avoid long gaps in medical oversight,” she says. “Often, friends and family are very relieved about the end of treatment, and don't realize that the cancer survivor is still coping with the effects of treatment and sorting out their identity as a cancer survivor. A heads up to one's support system might help loved ones realize that the end of treatment isn't necessarily the end of challenges associated with cancer.”

Further, she says health professionals working in oncology would agree that a cancer experience can be an emotional rollercoaster, and so a broad range of emotional responses is normal and par for the course.

Although fear of recurrence is a reality, and it is common for patients to worry about recurrence or progression of cancer—with research literature supporting this—Dr. Deshields says that cancer survivors need to sort out how they will manage this worry.  This concern can be triggered by personal symptoms, friends' experiences, or news items related to cancer.  “Some survivors find that they get anxious in anticipation of follow-up scans, blood work, or medical appointments; worried that there will be a bad outcome,” she says. “Some people are better than others at putting things out of their minds, but for those challenged by this; it is a skill that can be developed by working with a counselor.”

Survivors need to make sure they understand real symptoms, and which ones they should be concerned about. They should establish a plan for follow-up with their medical team. “Sometimes,” adds Dr. Deshields, “Worries about recurrence can be resolved with a medical test. Also, practicing good health behaviors can provide some reassurance that you're doing all you can to protect your health.”

Control What You Can

Lillie D. Shockney, RN, BS, MAS, administrative director, Johns Hopkins Cancer Survivorship Programs; associate professor, Johns Hopkins University School of Medicine, Departments of Surgery & Gynecology and Obstetrics; and associate professor, Johns Hopkins University School of Nursing in Baltimore, says fear of recurrence is very common, and cancer survivors are chronically trying to figure out what they can do to further prevent it. “We must educate patients about ways they can personally reduce risk and [areas they can take] control over, [such as] exercise, weight management, nutrition, adherence to long-term treatment such as hormonal therapies, avoidance of alcohol, and not smoking,” she said.

Likewise, Kristine Donovan, PhD, MBA, assistant member and licensed clinical psychologist, Psychosocial and Palliative Care Program, Moffitt Cancer Center in Tampa, Florida, says making positive life changes and practicing a healthy lifestyle are ways survivors can help improve their outlook as well as their overall health. “It’s important for survivors to take stock of their fears; if worrying about a recurrence is getting in the way of being able to enjoy life, of resuming one’s roles in life, it may be time to seek help from a clinician with expertise in dealing with this issue,” Donovan advises.

Frustration, worry, and stress are predictable responses to the diagnosis of a life-threatening illness and are often also part of the survivorship journey, particularly when it comes to fears of a cancer recurrence. In addition, exercise, eating right, continuing with screenings, medical follow-up, sticking with medication, and seeking emotional support from love ones will also prove beneficial. There are several things survivors can do to combat these feelings. “Seeking emotional support from other survivors and engaging oneself in challenging but pleasurable activities are just a few things that can help combat these feelings.” Donovan says.

Managing Side Effects

Shockney says patients often have a high level of tolerance for side effects during treatment because they are more focused on saving their own life.. “Once their life is saved, however, they develop a low tolerance for the continued side effects the treatment they received has produced,” Shockney says. She suggests that patients should discuss options with their health care providers from the beginning to make these side effects more tolerable. 

Body image following acute treatment is also a variable, says Shockney.  “What the public sees on the outside can be quite different from what is going on inside.” Treatment can often take its toll on the body. Depending on the type of cancer and treatment, effects can range from physical alterations as a result of surgery (such as a mastectomy); weight loss or gain; hair loss or changes (some people start going gray); to more physiologic changes, such as early menopause or digestive system alterations, or issues related to sexuality. These possibilities should be recognized and addressed, and survivors should know they are not alone, and that there are more resources available now than ever to help cope with these consequences of treatment.