A crushing sense of fatigue was spoiling John Ebers’ ski trip with his family. “I looked at my wife,” he recalled, “and said, ‘Man, I need to get in better shape.’”

Less than four weeks later, Ebers, a 46-year-old commercial beekeeper, learned the problem was something much grimmer than his fitness level: A tumor had broken through the wall of his colon and spread to his lymph nodes. He had Stage 3 colorectal cancer.

In order to get treatment, Ebers made an appointment with a local oncologist at the Cancer & Hematology Centers in Grand Rapids, Michigan. He was prescribed chemotherapy, which — as a representative for the practice noted in an email — is the standard of care, even though it is often debilitating.

For Ebers, chemotherapy was nearly impossible to tolerate.

Treatment Options With New Drugs Not Explained

What he hadn’t been told was that there was another treatment route available to him — one that started with sequencing the cancer’s genetic makeup. Genetic testing, according to Dr. Christopher Lieu of the University of Colorado Anschutz Cancer Center, could have revealed whether there were drugs that could precisely attack Ebers’ cancer. Targeted drugs are especially important for patients who don’t want chemotherapy or react badly to it, or whose cancer has spread.

“If Mr. Ebers had biomarker testing, it could have introduced new, more effective, and potentially less toxic, therapies to treat his cancer,” said Lieu, a medical scientific adviser to the Colorectal Cancer Alliance, an advocacy group.

It’s a situation that is all too common. Many patients could be helped by new drugs that disable the genes fueling their tumors. But doctors are not sending their tumor cells to be tested or, even if they are, prescribing the drugs.

“We’re at a period where our molecular understanding is unprecedented,” said Dr. Paul Mischel, a physician scientist at Stanford University. “But the infrastructure is really falling apart.”

“It’s a problem — it’s a big, big problem,” he added. “People should be really angry.”

Many Roadblocks to Better Cancer Treatments

Why are so few patients getting these groundbreaking treatments? Roadblocks abound. On the front end, doctors may not do a biopsy, or the biopsy may not have enough cells for a genetic analysis. Sometimes when a biopsy is done, doctors may not send the cells to a genetic testing lab. And even when they do, doctors may not prescribe the drug that can attack a patient’s cancer mutation. There are several likely reasons for this, including the number of recently approved treatments that doctors may not yet be aware of and the time it can take for protocols to change at hospitals.

Price is a major barrier. When doctors do prescribe one of the drugs, it is likely to be a pill that can cost $10,000 or more a month, said Dr. David Gerber, a lung cancer specialist at the University of Texas Southwestern Medical Center. Medicare has a yearly cap on co-pays, but patients who are uninsured or have private insurance can be hit with prescription bills that can bankrupt them.

Gerber and his staff try to find financial assistance programs for patients who can’t afford the drugs, he said, but their efforts do not always succeed or the whole process drags on too long for patients with metastatic cancer.

Research also shows that demographics and economics are at play. Those most likely to miss out on innovative cancer treatments include people who are poor or Black or Hispanic, who are uninsured or who are Medicaid recipients.

Doctors say the explosion of new treatments can also be too much to keep up with: The Food and Drug Administration has approved an average of one new cancer treatment a week for the past five years, an exceptional pace.

All together, these shortfalls can mean patients are missing out on therapies that could help them live longer and better.

Targeted Lung Cancer Treatments Extend Lives

Lung cancer, for example, has been transformed by targeted treatments.

“If you go back 20 years, metastatic lung cancer was a death sentence,” said Dr. Matthew Meyerson, a lung cancer researcher at Dana-Farber Cancer Institute. “Now there are huge numbers of patients surviving five years, 10 years, 20 years.”

That’s because there are now dozens of drugs designed to target any of 12 to 14 gene mutations for the disease, said Dr. Roy Herbst, a lung cancer specialist and director of the Dartmouth Cancer Center. And their effects, he added, “can be phenomenal.”

For some patients with non-small-cell lung cancer who have surgery and start a targeted drug early, Herbst said, oncologists like himself now even dare to mouth the word “cure.”

But in one comprehensive study, 34% of patients with non-small-cell lung cancer never got a genetic test of their tumors. The same was true for 60% of patients with metastatic breast cancer, 50% of men with metastatic prostate cancer and 49% of patients with metastatic pancreatic cancer.

Similarly, in metastatic colon cancer, the condition Ebers has, treatment guidelines now call for genetic tests for five mutations that, a recent paper stated, “have profound therapeutic implications.” Yet, the authors of that paper found, only 51% of patients were tested.

Genetic Testing to the Rescue

Ebers underwent that testing only when he sought a second opinion at the Mayo Clinic. After the first eight rounds of chemotherapy and then another 28 rounds, as well as radiation and an operation, he was so emaciated that he could circle his biceps with his hand. At that point, he was also despondent. He saw only chemotherapy as his future and thought he had just two more years to live.

Genetic testing saved him.

Within the first few minutes of his appointment at the Mayo Clinic, his oncologist there, Dr. Hao Xie, told him there was a spot on his lung — his cancer was now Stage 4. And, he said, “we need to get biomarkers.”

As soon as the tumor on Ebers’ lung was big enough for a biopsy, Xie sent Ebers’ cells for genetic testing. It showed Ebers had a mutation that occurs in just 2% to 4% of colon cancers but that can be attacked with a targeted treatment instead of chemotherapy.

When asked why Ebers’ doctors at Cancer & Hematology Centers did not look for genetic biomarkers, a representative of the practice stated that, for patients with colorectal cancer, testing was recommended “at the time of metastatic diagnosis” and “not at initial diagnosis or in early-stage disease.”

Ebers is not cured. But some of his tumors are no longer growing and others are growing only slowly. He is working out at the gym, feeling good. And if his tumors become resistant to his current treatment, there’s another targeted treatment in the wings, Xie said.

The end of those two years Ebers was supposed to have is fast approaching. But he is not fearful.

“I am betting on me,” Ebers said.

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This article originally appeared in The New York Times.

By Gina Kolata/Emily Elconin
c. 2026 The New York Times Company