“There is no evidence of disease.” While these are the six words every cancer patient longs to hear, for many their relief can be short lived.
The fear of recurrence can be every bit as debilitating as the fear of the cancer itself, and after constant screening, evaluation, and attention from medical professionals, being released for 3, 6, or even 12 months can feel like an eternity in which anything can happen. After all, the patient has established an emotional connection to his or her doctor, nurses, and treatment staff. Even though those people are still there if you need them, it can be scary to be monitoring how you feel on your own, when every fever or bout of nausea can seem like a sign of recurrence.
“People often tell me it's like waiting for the other shoe to drop,” said Amy Allison, PhD, Director of Psycho-Social Oncology at the Georgia Cancer Center at Augusta University. “Sometimes people also read into symptoms, worried that it means cancer has returned. As one person who had brain cancer said, ‘a headache will never just be a headache again.’”
This can lead to anxiety or worry. After spending so much time focusing on the symptoms and status of the disease, it can be difficult to step back from that constant state of alert.
Think of the soldier coming home from combat who has a strong reaction every time he hears a sudden noise. In fact, research suggests that post-traumatic stress disorder, often seen in military personnel when they return from war, is experienced by some people after they have encountered cancer and cancer treatment. Some people even experience this as insomnia or nightmares.
“When you fear for your life and worry you might not survive, it can be a hard adjustment to realize that you have survived and the worst is behind you,” Allison said. “Night is often when people experience this in the form of a sleep disorder.”
Although patients may have successfully overcome negative emotions during their cancer fight, the emotions that replace them are different, but no less intense. In Allison's experience, some people find this to be the time when depression creeps in.
Oftentimes, people are so busy keeping up with appointments and focusing on what needs to happen next that the distraction keeps them from stopping and thinking. After their treatment is over and things slow down, that's when the emotional side of what they went through can catch up.
“People may find they feel lonely,” she said. “People may also still have to grieve what was lost. They may have won the war, but maybe some battles were lost—changes to their body, changes to their ability to do work or hobbies. Relationships can change, too.”
Dealing with the negative emotions after surviving cancer can prove particularly tough because patients may not have the same level of support from the family and friends who were there taking them to chemotherapy appointments or caring for them after surgery.
“When treatment is complete and everyone goes back to life as usual, that is often when a cancer patient's feelings about everything that happened hits them,” Allison said. “People may feel isolated and lonely as they still struggle with understanding what their new normal is.”
This is why it is so important for oncologists to talk with their patients about the supportive care services offered by their medical facility. Support groups can connect people, allowing them to share their fears, get answers to questions, and hear about the experiences of other cancer survivors.
“One of the things patients may find most impactful is hearing from a survivor who had experienced surgery, chemotherapy, and radiation and could tell them that everything would be okay,” Alison said. “Those survivors can share their experience with their disease and provide the comfort that comes from being a survivor.”
Individual, couples, or family counseling can help people work through lingering symptoms, such as insomnia or persistent worry, or help process what they have been through as they deal with the “now what?” of post-treatment survivorship.
“Some of the most important advice I can give a cancer patient is that your cancer is 100 percent different from anyone else's cancer,” Allison said. “Their treatment plan, prognosis, and your survival are all unique to them.”
Which is why Allison believes it's important for medical professionals to consider more than just the cancer itself.
“A serious health concern can disrupt your life and your relationships,” Allison said. “And research has shown that support services can be very beneficial.”
Support groups and services like those she oversees at the Georgia Cancer Center—which include music therapy, chair yoga, spiritual care, and nutrition education—provide patients valuable assistance at an important juncture in their lives, helping them make the most out of those six words they worked so hard to hear: “There is no evidence of disease.”
CHRIS CURRY is the Communications Coordinator for the Georgia Cancer Center at Augusta University.