How A Group Of Lung Cancer Survivors Got Doctors To Listen

“A group of lung cancer survivors was chatting online last May about what they thought was a big problem: Influential treatment guidelines published by a consortium of prominent cancer centers didn’t reflect an option that several people thought had saved their lives. They wanted to change that.

“The guidelines from the National Comprehensive Cancer Network are important because they’re often a first stop for an oncologist trying to develop a treatment plan after a patient’s diagnosis, Chris Newman, one of the patient group’s members, told Shots. But the guidelines don’t always reflect newer and less proven treatment options that may be offered only at big academic cancer centers, she said. Patients might miss out on treatments that could help them, if the guidelines aren’t up to date.

“That’s what Newman and others thought was happening for some patients with a type of advanced non-small cell lung cancer. When cancer has spread, or metastasized, beyond the original site, it’s diagnosed as stage IV. And it’s historically been a pretty black and white diagnosis. With most forms of cancer, you have metastases or you don’t, says Paul Okunieff, a radiation oncologist and director of the University of Florida Health Cancer Center. Patients whose cancer has spread are often offered chemotherapy or supportive care rather than surgery or radiation to remove the tumors, on the assumption that it’s too late to prevent further spread.

“But some research suggests that patients with oligometastases, or a limited number of tumors (Okunieff says it’s fewer than three or five, depending on whom you ask) may get significant benefit from more aggressive treatment. That possibility wasn’t reflected in the NCCN guidelines.”

Most Internet Sources on Prostate Cancer Disagree with Expert Panel's Recommendation

“Only 17 percent of top-ranked consumer health websites advise against screening for prostate cancer, a recommendation made more than two years ago by the U.S. Preventive Services Task Force (USPSTF), according to a study presented at the 2014 Clinical Congress of the American College of Surgeons.

“In an Internet search for the phrase ‘prostate cancer screening’ on three main U.S. search engines, study researchers found that most sites appearing on the first results page recommended a patient-individualized approach to screening.

“Prostate cancer is the most common cancer in men besides skin cancer, affecting one in seven American men over their lifetime according to the American Cancer Society.1 Screening, which is routine testing in the absence of symptoms, can detect prostate cancer early. Screening tests for this cancer are the prostate-specific antigen (PSA) blood test, a digital rectal exam, or both.

” ‘The recommendation not to screen men for prostate cancer is controversial,’ said lead author Philip Zhao, MD, a urologist at The Arthur Smith Institute for Urology at North Shore–Long Island Jewish Health System, New Hyde Park, N.Y. He performed the research while a resident physician at Rutgers–Robert Wood Johnson Medical School, New Brunswick, N.J, under the guidance of Robert E. Weiss, MD, professor of urology.

” ‘Our study results suggest that two-thirds of the online community disagree with the USPSTF recommendation against prostate cancer screening,’ Dr. Zhao said.”