Scanxiety

Beset With 'Scanxiety', Cancer Patients Feel A Psychic Pain

By Stacey Burling, The Philadelphia Inquirer
Sunday, March 29, 2009

PHILADELPHIA -- 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, suddenly too big and menacing to ignore. "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. These tests that spy on cancer -- telling patients when the disease is dormant and when it's growing -- give life a new emotional rhythm. For most healthy people, feelings pivot a little with unpredictable daily experiences -- the grumpy boss who snarls an unreasonable order, or a friend who calls with a funny story.

But in the parallel 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." Each scan presents, as Dr. Lee Schwartzberg, a cancer specialist and medical director of The West Clinic in Memphis, puts it, a "discrete existential crisis." 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.

Increasingly, cancer experts are recognizing the importance of "psychosocial" problems like this. The influential Institute of Medicine in 2007 concluded that all cancer care should include treatment for emotional and social problems the disease causes, a standard that doctors say current funding systems make difficult to achieve.

Jimmie Holland, a psychiatrist at Memorial Sloan-Kettering Cancer Center and a pioneer in studying the psychological impact of cancer, advocates making emotional distress the "sixth vital sign" in cancer treatment. Everyone knows the psychic pain is there, Holland said, but doctors and patients rarely talk about it. "I call it, 'Don't ask, don't tell,' " she said. "The patients don't want to bring it up. The doctors sure don't want to bring it up, so it doesn't get brought up. So they go home and suffer, and it's not good."

As her scans approach, Rothman finds herself thinking of the disgusting liquid she'll have to drink before the machine can do its work, then of the agonizing days she'll wait for results. "I just start to get very nervous inside and very jumpy and a little crabby and cranky," said Rothman, who also recently had surgery for melanoma. "I really don't say too much about that to anybody." Instead, she cries in the shower, where no one can hear.

The day she's to get the news, she sits uneasily in the waiting room at Frankford Hospital-Torresdale, tapping her toes and trying to make peace between the warring factions in her brain. One side imagines the CAT scan she knows will come one day -- the one that shows the cancer has spread. The other invokes every higher power this Jewish woman can muster, including Jesus and Muhammad. "Please make this OK," she prays. When she finally sees the doctor, Allen Terzian, she studies his body language and hopes for the little smile that tells her the cancer's under control. When she saw that smile after her last scan, in January, she exhaled deeply and felt her muscles relax. "It's like, 'Oh, boy, you've got six, seven weeks you don't even have to think about this,'" she said.

Then, the cycle starts all over again.

So it is for thousands of Americans. According to the Institute of Medicine, one in 10 households includes a family member who has been diagnosed with or treated for cancer in the last five years. 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.

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 more healthful lifestyles, said Keith Bellizzi, who studies cancer survivorship at the University of Connecticut.

It doesn't help that the tests themselves involve needles, foul-tasting liquids (for some CAT scans) or, in the case of MRIs, noise and tight spaces.

Jody Powers, a 44-year-old Malvern, Pa., woman, has been getting regular MRIs for her brain tumor for six years and still finds the noise and close quarters stifling. "It feels like a coffin," she said. "I feel like I'm in a war." After a test, she wants to hear her doctor's verdict fast, so she stays until the technicians -- they all know her by now -- put the MRI results on a disk. Then her husband takes her to to see her doctor. She rides, shaking, with the pictures in her purse. "It's like traveling with your head on your lap," she said.

Judy Bernstein is living with a remarkable variety of cancers, including lymphoma, lung, breast and skin cancer. They're all under control, and Bernstein is finding the tests easier now than she did when she learned she had lymphoma in 2001. "Way back in the beginning, I was always scared, and I was scared, it turns out, for good reason," she said, "because every time I turned around, I had another cancer." She's still nervous, but she considers herself a good coper. Plus, like many cancer patients, she takes an anti-anxiety medication. "You can put it out of your mind, but it's always there," she said. "But Ativan is wonderful," she added with a raucous laugh. "At least you can sleep." Nobody likes to get bad news, but Bernstein, 65, says the scans have kept her alive. "It's early detection that is the key to living with cancer."