Reporting cancer complications quickly may boost survival

Online notices of side effects upped longevity in test.

If you’re being treated for cancer, speak up about any side effects. A study that had patients use home computers to report symptoms like nausea and fatigue surprisingly improved survival — by almost half a year, longer than many new cancer drugs do.

The online tool was intended as a quick and easy way for people to regularly report complications rather than trying to call their doctors or waiting until the next appointment. Researchers had hoped to improve qual- ity of life but got a bonus in longer survival.

“I was floored by the results,” said the study leader, Dr. Ethan Basch. “We are proactively catching things early” with online reporting.

Patients were able to stick with treatment longer because their side effects were quickly addressed, he said.

People shouldn’t assume that symptoms are an unavoidable part of cancer care, said Dr. Richard Schilsky, chief medical officer of the American Society of Clinical Oncology.

“You want to be able to reach your provider as early and easily as possible,” because a sign like shortness of breath may mean treatment isn’t working and needs to be changed, he said.

The study was featured at the cancer group’s annual meeting in Chicago on Sunday and published in the Journal of the American Medical Association.

Earlier studies suggest that doctors miss about half of patients’ symptoms.

“Much of this happens between visits when patients are out of sight and out of mind,” said Basch, a researcher at the University of North Carolina-Chap- el Hill and Memorial Sloan Kettering Cancer Center in New York.

Sometimes patients just put up with a problem until their next exam. The study tested whether the online tool could catch problems sooner. It involved 766 peo- ple being treated for various types of advanced cancers at Sloan Kettering. Some were given the online symptom tool.

The online group was asked to report symptoms at least once a week — sooner if they had a problem.

Doctors saw these reports at office visits, and nurses got email alerts when patients reported severe or worsening problems.

“Almost 80 percent of the time, the nurses responded immediately,” calling in medicines for nausea, pain or other problems, Basch said.

Six months later, health-related quality of life had improved for more of those in the online group and they made fewer trips to an emer- gency room. They also were able to stay on chemother- apy longer — eight months versus six, on average.

Median survival in the online group was 31 months versus 26 months for the others.

A larger study will now test the online reporting system nationwide.

A colon cancer patient, 53-year-old James Sylvester of New York, is using a version of the one tested in the study. He hasn’t had many side effects, but a rash led to a referral to a dermatologist to see if it was related to his cancer medicine.

“The main benefit is they go holistically all over your body” with the list, asking about things that folks may not realize could be due to cancer, such as a rash or trouble with balance, he said.

“Some of the things you might not tell your doctor, or you might forget,” Sylvester said. The tool ensures the doctor has that information ahead of time, “so when you have that face time, it’s more focused.”