On an Internet chat room popular with breast cancer survivors, one thread — called “Where’s My Remote?” — turns the mental fog known as chemo brain into a stand-up comedy act.
One woman reported finding five unopened gallons of milk in her refrigerator and having no memory of buying the first four. A second had to ask her husband which toothbrush belonged to her.
At a family celebration, one woman filled the water glasses with turkey gravy. Another could not remember how to carry over numbers when balancing the checkbook.
Once, women complaining of a constellation of symptoms after undergoing chemotherapy — including short-term memory loss, an inability to concentrate, difficulty retrieving words, trouble with multitasking and an overarching sense that they had lost their mental edge — were often sent home with a patronizing “There, there.”
But attitudes are changing as a result of a flurry of research and new attention to the after-effects of life-saving treatment. There is now widespread acknowledgment that patients with cognitive symptoms are not imagining things, and a growing number of oncologists are rushing to offer remedies, including stimulants commonly used for attention-deficit disorder and acupuncture.
“Until recently, oncologists would discount it, trivialize it, make patients feel it was all in their heads,” said Dr. Daniel Silverman, a cancer researcher at the University of California, Los Angeles, who studies the cognitive side effects of chemotherapy. “Now there’s enough literature, even if it’s controversial, that not mentioning it as a possibility is either ignorant or an evasion of professional duty.”
That shift matters to patients.
“Chemo brain is part of the language now, and just to have it acknowledged makes a difference,” said Anne Grant, 57, who owns a picture-framing business in New York City. Ms. Grant, who had high-dose chemotherapy and a bone marrow transplant in 1995, said she could not concentrate well enough to read, garbled her sentences and struggled with simple decisions like which socks to wear.
Virtually all cancer survivors who have had toxic treatments like chemotherapy experience short-term memory loss and difficulty concentrating during and shortly afterward, experts say. But a vast majority improve. About 15 percent, or roughly 360,000 of the nation’s 2.4 million female breast cancer survivors, the group that has dominated research on cognitive side effects, remain distracted years later, according to some experts. And nobody knows what distinguishes this 15 percent.
Most oncologists agree that the culprits include very high doses of chemotherapy, like those in anticipation of a bone marrow transplant; the combination of chemotherapy and supplementary hormonal treatments, like tamoxifen or aromatase inhibitors that lower the amount of estrogen in women who have cancers fueled by female hormones; and early-onset cancer that catapults women in their 30s and 40s into menopause.
Other clues come from studies too small to be considered definitive. One such study found a gene linked to Alzheimer’s disease in cancer survivors with cognitive deficits. Another, using PET scans, found unusual activity in the part of the brain that controls short-term recall.
The central puzzle of chemo brain is that many of the symptoms can occur for reasons other than chemotherapy.
Abrupt menopause, which often follows treatment, also leaves many women fuzzy-headed in a more extreme way than natural menopause, which unfolds slowly. Those cognitive issues are also features of depression and anxiety, which often accompany a cancer diagnosis. Similar effects are also caused by medications for nausea and pain.
Dr. Tim Ahles, one of the first American scientists to study cognitive side effects, acknowledges that studies have been too small and lacked adequate baseline data to isolate a cause.
“So many factors affect cognitive function, and the kinds of cognitive problems associated with cancer treatment can be caused by many other things than chemotherapy,” said Dr. Ahles, the director of neurocognitive research at Memorial Sloan-Kettering Cancer Center in New York.
The new interest in chemo brain is, in effect, a testimony to enormous strides in the field. Patients who once would have died now live long enough to have cognitive side effects, just as survivors of childhood leukemia did many years ago, forcing new treatment protocols to avoid learning disabilities.
“A large number of people are living long and normal lives,” said Dr. Patricia Ganz, an oncologist at U.C.L.A. who is one of the nation’s first specialists in the late side effects of treatment. “It’s no longer enough to cure them. We have to acknowledge the potential consequences and address them early on.”
As researchers look for a cause, cancer survivors are trying to figure out how to get through the day by sharing their experiences, and by tapping expertise increasingly being offered online by Web sites like www.breastcancer.org and www.cancercare.org.
There are “ask the experts” teleconferences, both live and archived, and fact sheets to download and show to a skeptical doctor. Message boards suggest sharpening the mind with Japanese sudoku puzzles or compensatory techniques devised to help victims of brain injury. There are even sweatshirts for sale saying “I Have Chemo Brain. What’s Your Excuse?”
Studies of cognitive effects have overwhelmingly been conducted among breast cancer patients because they represent, by far, the largest group of cancer survivors and because they tend to be sophisticated advocates, challenging doctors and volunteering for research.
Most researchers studying cognitive deficits say they believe that those most inclined to notice even subtle changes are high-achieving women juggling careers and families who are used to succeeding at both. They point to one study that found that complaints of cognitive deficits often did not match the results of neuro-psychological tests, suggesting that chemo brain is a subjective experience.
“They say, ‘I’ve lost my edge,’ ” said Dr. Stewart Fleishman, director of cancer supportive services at Beth Israel and St. Luke’s/Roosevelt hospitals in New York. “If they can’t push themselves to the limit, they feel impaired.”
Dr. Fleishman and others were pressed as to why a poor woman, working several jobs to feed her children, navigating the health care system and battling insurance companies, would not also need mental dexterity. “Maybe we’re just not asking them,” Dr. Fleishman said.
Overall, middle-class cancer patients tend to get more aggressive treatment, participate in support groups, enroll in studies and use the Internet for research and community more than poor and minority patients, experts say.
“The disparity plays out in all kinds of ways,” said Ellen Coleman, the associate executive director of CancerCare, which provides free support services. “They don’t approach their health care person because they don’t expect help.”
But approaching a doctor does not guarantee help. Susan Mitchell, 48, who does freelance research on economic trends, complained to her oncologist in Jackson, Miss., that her income had been halved since her breast cancer treatment last year because everything took longer for her to accomplish.
She said his reply was a shrug.
“They see their job as keeping us alive, and we appreciate that,” Ms. Mitchell said. “But it’s like everything else is a luxury. These are survivor issues, and they need to get used to the fact that lots of us are surviving.”
Among women like Ms. Mitchell, lost A.T.M. cards are as common as missing socks. Children arrive at birthday parties a week early. Wet clothes wind up in the freezer instead of the dryer. Prosthetic breasts and wigs are misplaced at the most inopportune times. And simple words disappear from memory: “The thing with numbers” will have to do for the word “calculator.”
Linda Lowen, 46, had a hysterectomy and chemotherapy for ovarian cancer 13 years ago, and says she still cannot recognize neighbors at the grocery store. “I had a mind like a steel trap, and I ended up with a colander for a brain,” said Ms. Lowen, a radio and television talk show host in Syracuse.
The other night, Ms. Lowen set out to find a good place to store her knitting supplies. She began emptying a cabinet of games that her teenage daughters no longer played. Meanwhile, she noticed a blown light bulb and went to find a replacement. That detour led to another, and five hours later she had scrubbed every surface and tidied the contents of eight drawers. But she still had no storage space for her knitting supplies.
“I have an almost childlike inability to follow through on anything,” Ms. Lowen said.
Solutions come in many forms for women whose cancer treatment has left them with cognitive deficits.
Sedra Jayne Varga, 50, an administrative assistant in family court in Manhattan, is part of a research study of the stimulant Focalin, which she said had helped. But Ms. Varga also plans to have laser surgery on her eyes so that losing her glasses will no longer be an issue.
Lu Ann Hudson, 44, a designer of financial databases in Cincinnati, relies on a key fob that sets off a beep in her car when she is looking for it in parking lots. Terry-Lynne Jordan, 43, who analyzes environmental incidents for an oil company in Calgary, Alberta, uses the calendar on her computer and voice mail messages to herself to remind her of meetings.
And Debbie Kamplain, a 32-year-old stay-at-home mother in Peoria, Ill., hired a $30-an-hour personal organizer to help her sell a house, buy another and get ready to move her family to Indiana next month.
But it is Ms. Kamplain’s 2 ½-year-old son, Daniel, who sees to it that she stays on task. Long before Daniel could talk, he would pull her over to the refrigerator if she got distracted while getting him a drink.
“Poor kid,” Ms. Kamplain said. “I say I’m going to do something, forget about it immediately, and he’s the one who has to remind Mommy about stuff.”