The 'routine' fear for cancer patients
Psychic distress of tests is labeled 'scanxiety.'
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. Once in a while, there's a wedding, a birth, or a funeral to trigger the big highs and lows.
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 Lee Schwartzberg, a medical oncologist at 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.
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, and they're happy," she said. "It's a helluva way to live."
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.
"I get so worried between CAT scans," said Cindy Newcott, a Bethesda, Md., woman with ovarian cancer. "I forget about living today. You have to remember to live for each day. . . . It's very hard to do because I want so much more of my family and so much more of life and so much of what this world has to offer. It's very hard. . . . I'm praying for that miracle each time."
Bunny Guerrieri, 53, a Havertown oncology nurse with advanced breast cancer, finds herself beset with "What if . . .?" questions before her PET scans. What if she can't handle the news? What if she doesn't respond to her next treatment? What if her new Camry lasts longer than she does?
"The basic instinct anybody has coming up to any of these tests is fear," Guerrieri said. "Unfortunately, that fear kind of imprisons us. You fall headlong into anxiety. You can't help that."
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 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 Jefferson 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.
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."
Her husband, Brad, has never gotten used to the emotional turmoil the tests bring. On one visit more than a year ago, Susan's oncologist at Kimmel Cancer Center at Jefferson at first thought the cancer might have spread further. She changed her mind after learning more about the test. The couple went out to celebrate.
"Within an hour-and-a-half span, I went from total dejection . . . to eating all-you-can-eat lobster," Brad Gildin said. "You can't have a bigger roller coaster than that in your life."
While many can dream of a cure, others, like the Gildins, learn to feel good about less. "The only good news we get is that it's growing slower. Our idea of good news to anybody else would be disastrous news," Brad Gildin said.
"The goal of people in advanced cancer is to fight to neutrality, until a better drug comes along. The drugs Susan's on now were not even in the world four years ago."
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 antianxiety 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."
Judi Rothman finds solace in the kindness of her chemotherapy nurses. And in the 80-foot pine trees outside the little house she and her husband bought near Ocean City, Md., before her diagnosis. "My soul, if it makes any sense to you, is in those trees," she said. "At the top they sway, and it gives me peace."
She's due for another CAT this week.
Contact staff writer Stacey Burling at 215-854-4944 or firstname.lastname@example.org.