"PJ DiPentino felt uneasy about his local oncologist's plan. DiPentino's bladder cancer had returned in a lymph node, and the doctor was recommending he continue immunotherapy and wait to see if it spread.
DiPentino, 61 years old, who was being treated near his home in Livingston, Mont., contacted Dr. Bogdana Schmidt, the urologic oncologist at Huntsman Cancer Institute in Salt Lake City who had treated him in 2023. She and other specialists decided DiPentino should start radiation right away.
Schmidt said DiPentino is one of many patients treated at the local level whom she would have treated differently had they come to her cancer center first.
"They spend time and resources on a treatment plan I knew wouldn't have worked," she said. "And that makes me feel sad because the patient lost time."
Cancer care is getting more complicated due to a better understanding of cancer's molecular underpinnings. Doctors now think of cancer as more than 100 distinct diseases, with cancers including lung, breast and bladder broken into subtypes.
That complexity is contributing to a divide in how patients fare depending on where they go.
Oncologists at magnet cancer centers that dot the U.S. develop expertise in just a few cancer subtypes. They draw from a rapidly expanding arsenal of new drugs for specific and sometimes rare cancers, including experimental ones that aren't widely available.
But most people get treated locally to be near home and jobs. Local oncologists, faced with a range of cancers, can't stay up-to-date on everything. The National Comprehensive Cancer Network updated its nearly 90 guidelines across cancer types more than 200 times in the past year.
"We have to be a jack of all trades," said Dr. Stephen Divers, an oncologist in Hot Springs, Ark., and chief medical officer at the American Oncology Network, a group of community practices.
Three decades ago, lung-cancer patients had a few chemotherapies and terrible odds of survival. In the past five years, survival rates have increased some 20% because of dozens of newer drugs, many tailored to a tumor's genetic makeup. The American Society of Clinical Oncology maintains a "living guideline" to track how to use them.
"The guideline is almost impossible to read," said Dr. Julie Gralow, the group's chief medical officer.
Dr. Jonathan King tries to keep up with guideline changes and listens to podcasts about cancer treatment during his morning commute to the James Pulsipher Regional Cancer Center in Grand Junction, Colo.
He cold-calls specialists at bigger centers for advice. One day in July, King consulted a pancreatic-cancer expert at the Mayo Clinic, a multiple myeloma doctor at the University of Utah and a bladder-cancer specialist at Johns Hopkins.
"The learning curve is steep," King said.
King's patient Terrie Austin in April traveled 5 1/2 hours from her home in Whitewater, Colo., for surgery at Huntsman. Specialists there found that a pathologist had diagnosed her with the wrong kind of lung cancer.
"How could that happen?" Austin, 71, said. Her new diagnosis made her eligible for Merck's Keytruda immunotherapy after surgery.
A third of 120 patients who sought a second opinion at Memorial Sloan Kettering Cancer Center in New York had their treatment changed, a 2023 review found. MD Anderson Cancer Center in Houston said about one in five of its new patients are rediagnosed or restaged. Patients at academic centers have better outcomes for cancers including lung and multiple myeloma, studies show.
"It's possible that one out of five patients in America is getting the wrong treatment," said Dr. Peter WT Pisters, MD Anderson's president.
DiPentino drove 30 miles over a mountain pass in early 2023 to get to the nearest hospital, after seeing blood in his urine. He was diagnosed with stage-2 bladder cancer and started treatment.
That summer, his urologist said he needed a surgery called a radical cystectomy. DiPentino could get it locally, but his urologist said he would be better off at Huntsman. Doctors there perform the surgery more often.
Schmidt removed DiPentino's bladder and prostate that June. He and his wife, Lexi DiPentino, stayed at a lodge for traveling cancer patients in Salt Lake City for 10 days while he recovered.
"It was just a lot," he said. On the plane ride home, DiPentino wore a cancer-themed shirt. A 10-year-old cancer survivor gave him a high-five.
DiPentino started immunotherapy. That kept the cancer at bay until December. DiPentino's local oncologist wanted to wait to see if it got worse before changing therapies. Schmidt and her colleagues at Huntsman wanted to target the returned disease with radiation to slow its spread. It was a bet based on experience, not a widely observed standard of treatment.
"You're leaning on expert opinion," Schmidt said.
DiPentino switched to another local oncologist, who worked with Schmidt to start radiation right away. In July, his cancer recurred in a lymph node between his abdomen and lungs. Schmidt and his local doctors put him on a combination of immunotherapies that wasn't available when he was diagnosed.
"I just thank the Lord that oncology has changed," DiPentino said. "How lucky am I?"" [1]
1. Cancer Patients' Care Faces Growing Divide. Abbott, Brianna. Wall Street Journal, Eastern edition; New York, N.Y.. 23 Oct 2024: A.1.
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