Judi Rothman found out a year ago that she had colon cancer that had spread to her liver.
Every day since then, she has lived with worry.
She can push it beneath the surface of her life most of the time. But the minute her doctor tells her it's time for another CAT scan, the fear springs like a cobra.
“In the back of your mind, it's always there that the other shoe is going to drop, and that becomes more active in the days before that CAT scan until I hear what happened,” said Rothman, who is 61 and lives in the Northeast. She gets CAT scans every other month to monitor her cancer.
“I always think the worst,” she said.
Rothman suffers from what cancer patients call “scanxiety,“ the fear that punctuates their lives as “routine” tests approach.
In the universe that cancer patients and their families inhabit, CAT and PET scans, MRIs and blood tests, divide a life in regular increments of life-and-death fear, of ever-evolving hopes, and “new normals.”
Every six weeks or three months or year, people find out whether they've hit another fork in the cancer-treatment road. Whether they're closer to a cure. Or death.
“The anxiety that comes prior to, during, and then until you get the test results is one of the scourges of this disease,” said Kathleen Coyne, program director for the Wellness Community in Philadelphia. “It's really something that a lot of people don't understand that don't have cancer.”
More time to worry
All this worrying is a relatively new problem. While cancer was once almost always a death sentence, now patients live longer, which gives them more time to fret. Some of the tests are also new, providing a different focus for fears that might once have homed in on physical symptoms alone.
Susan Gildin was diagnosed with Stage IV colon cancer in 2001 and has had CAT and PET scans every four to six months since. She didn't fear them much in the beginning. She was more optimistic then. Now, she can do without the details.
“I've had to deal with so much in the last several years,” she said. Sparing herself from the specifics is “just a little bit of protection that still keeps me going, where I still have that ray of hope, and I know that (the doctor) will put me on something that's going to attack whatever's there.”
A positive incentive?
Bad news means more tests, new treatments, more fear. Dreams diminish from cure to control, or from control to holding on long enough for a new treatment to come along.
Good news brings relief – even elation – and a reprieve from worry.
Rita Axelrod, a medical oncologist at the Kimmel Cancer Center at Thomas Jefferson University Hospital, has seen how buoyant a good scan can make patients feel. “They're really happy. They live from scan to scan… ”
Doctors and counselors who work with patients say anxiety is a normal reaction to cancer and the uncertainty it brings. If you're not worried after a diagnosis of cancer, said Scott Siegel, a health psychologist with Christiana Care Health System, “it probably means you don't understand the stakes.”
On the other hand, experts say, there's often no correlation between how much people worry and how dangerous their cancer is.
Fear can prompt patients to delay tests or treatment, they say. More recently, researchers have started measuring its positive impact: giving patients a powerful incentive to lead healthier lifestyles, said Keith Bellizzi, who studies cancer survivorship at the University of Connecticut.
Everyone agrees the fears spike as tests approach. Some patients take antianxiety or sleeping medications only in the days before their scans. As much as patients – and their families – know they should live in the moment, the tests make the future hard to ignore.