A New Reality for Terminal Cancer: Longer Lives, Chronic Uncertainty
A New Era of Cancer Treatment
Gwen Orilio didn’t know how long she had to live after her stage-four lung cancer diagnosis. The disease had already infiltrated her eye, so the 31-year-old didn’t bother opening a retirement account. Ten years later, Orilio is still alive. And she still has metastatic cancer.
Keeping her going is a string of new treatments that don’t cure the disease but can buy months—even years—of time, with the hope that once one drug stops working, a new one will come along. Orilio started on chemotherapy, and then switched to a new treatment, and then another, and another, and another. “What’s next? What do I have lined up for when this one stops working?” said Orilio, a high-school math teacher who lives in Garner, N.C. “My motto is that the science just needs to stay a step ahead of me, and so far it’s been working.”
This past winter, she started a retirement fund at age 41. Orilio is part of a new era of cancer treatment challenging the idea of what it means to have and survive cancer. A small but growing population is living longer with incurable or advanced cancer, navigating the rest of their lives with a disease increasingly akin to a chronic illness. The trend, which started in breast cancer, has expanded to patients with melanoma, kidney cancer, lung cancer, and others.
The new drugs can add years to a life, even for some diagnoses like Orilio’s that were once swift death sentences. They also put people in a state of limbo, living on a knife’s edge waiting for the next scan to say a drug has stopped working and doctors need to find a new one. The wide range of survival times has made it more difficult for cancer doctors to predict how much time a patient might have left. For most, the options eventually run out.
Patients contend with side effects from ongoing treatment—and their cancer—like crushing fatigue or nerve damage, but they often don’t look sick. Other, more routine health problems and the financial toll of multiple rounds of drugs also matter more when a person lives for years, instead of months.
“I have a problem with the narrative of cancer being contained to something that is either cure or die,” said Dr. Lori Spoozak, a gynecologic oncologist and palliative medicine doctor at the University of Kansas Cancer Center. “The experience our patients go through is much more complicated than that.”
Cancer as Chronic Illness
The U.S. is currently home to more than 18 million cancer survivors, over 5% of the total population, and their ranks are expected to grow to 26 million by 2040. Those living with the disease are included among them. More than 690,000 people were projected to be living with stage-four or metastatic disease of the six most common cancers—melanoma, breast, bladder, colorectal, prostate or lung cancer—in 2025, according to a 2022 report from the National Cancer Institute. That’s an increase from 623,000 in 2018 and a significant rise since 1990, the report found.
Part of the increase is due to a rise in bladder and prostate cancers, and better diagnostic tools that recognize more stage-four cancers earlier, researchers said. But much of it is because those patients are living longer. Nearly 30% of survivors diagnosed with metastatic melanoma and 20% of those diagnosed with metastatic colorectal or breast cancer had been living with their disease for a decade or more, the NCI paper estimated.
More than 600,000 people in the U.S. die of cancer each year. Cancers that reach stage four and metastasize to the brain, liver or other body parts carry the worst odds. Many patients die within weeks. But a greater portion of patients across many cancers are now still alive five years after a late-stage diagnosis compared with two decades ago, federal data show.
“I can legitimately tell most of the people I meet that I think their survival is measured in years,” said Dr. Mark Lewis, director of gastrointestinal oncology at Intermountain Health in Utah. “More and more people are experiencing cancer as a chronic illness.”
Even for lung cancer, the biggest U.S. cancer killer, the five-year relative survival rate for advanced disease has inched up, from 3.7% for patients diagnosed in 2004 to 9.2% for patients diagnosed in 2017, federal data show. The overall lung cancer survival rate has risen by 26% in the past five years, according to the American Lung Association, as declining cigarette use, screening, and new drugs have driven down deaths.
Advancements in Treatment
The expanding number of therapies that target a cancer’s mutations or boost the immune system are improving the outlook for several cancers. In breast cancer, treatment for metastatic disease accounted for 29% of the drop in deaths between 1975 and 2019, according to one 2024 estimate, with screening and treatment for early-stage disease accounting for the rest.
Dr. Eric Winer, a breast cancer oncologist and the director of the Yale Cancer Center, has heard people talk about cancer becoming a chronic disease for decades. It had always been true for a small subset. “And now, in breast cancer, it’s true for a bigger proportion of patients with metastatic breast cancer.”
Starting around 2000, drugs that hit specific genetic abnormalities such as Herceptin for breast cancer and Gleevec for leukemia established a new class of targeted therapies, buoyed by a better understanding of cancer’s molecular underpinnings. Immunotherapies called checkpoint inhibitors entered in 2011 for melanoma. Keytruda, first approved in 2014, is one of the world’s top-selling drugs and used across 18 cancers. Advances snowballed.
“Just the availability of the therapeutic options and the advances has been tremendous,” said Dr. Robin Zon, director of breast oncology at Cincinnati Cancer Advisors and past president of the American Society of Clinical Oncology. “We’re able to be more precise about getting the right drug with the right person.”
Zon helped write new recommendations in April 2024 for survivor care for metastatic patients, including that they should be granted access to survivor programs often reserved for patients who have finished treatment.
The New Normal
As patients live longer, never fully free of the disease, the financial strain of scans, treatments and travel for care compounds with time. The immediate rush of support from friends and family fades as the emergency becomes routine. Regular scans and tests to see if cancer has progressed or returned can fill patients with so much dread that the feeling now has its own word: scanxiety.
Orilio feels it at every 12-week scan, wondering when the test will reveal bad news and she’ll need another new drug. “When I get the scan results, I can pretend I don’t have cancer for the next 12 weeks until I go get scanned again,” she said. “I try to live a normal life in between.”
Orilio has spent a decade in this “new normal.” In late 2014, a series of migraines and an eye exam led doctors to find a tumor in the back of Orilio’s eye. More scans and surgery followed. In her hospital room, the surgeon told her the cancer had started in her lung. It was stage four.
Orilio’s mind went to her daughter, who was 18 months old. Back at home, she told her husband that she was scared. It was the only time she’d ever seen him cry. “I told him he’s never allowed to leave me,” Orilio joked.
Tests revealed her cancer had a rare genetic alteration called a ROS1 fusion, boosting her odds of survival. ROS1 is one of several lung-cancer alterations vulnerable to targeted drugs—drugs that hit the market for the first time right when she needed them.
Orilio switched from chemotherapy to a drug called crizotinib, which helps block specific proteins that drive cancer growth. The drug would go on to become the first treatment for ROS1-positive lung cancer patients approved by the Food and Drug Administration in 2016.
That worked for Orilio until 2017, when the cancer appeared in her brain. Her doctor said surgery or whole brain radiation was next. Orilio was so scared that she got on a plane to Boston to see a doctor who specializes in ROS1. She enrolled in a clinical trial for a drug called lorlatinib, and the spots in her brain disappeared.
Four years of calm followed. Then, Orilio’s cancer developed a mutation on the ROS1 gene that made lorlatinib ineffective. She tried yet another experimental drug that bought her several more months, and she’s had several rounds of radiation throughout her treatment. Now, she’s on zidesamtinib, which has worked for around three years and counting. The drugmaker, Nuvalent, announced positive data for the drug in June.
Orilio takes the pill every morning before she brushes her teeth. Like most of the treatments she’s tried, it makes her feel fatigued. She also put on weight. Her doctor is already thinking about what drug might be next—and trying to develop new options with her research team.
“It’s hard because cancer is so smart,” said Dr. Jessica J. Lin, a lung cancer specialist at Mass General Brigham in Boston, who is Orilio’s doctor. “We know at some point cancer is going to figure out a way to escape the treatment again.”
Many of Lin’s patients, including Orilio, are at least five years out from a metastatic diagnosis. She hears their stories about weddings and graduations at the same time she walks them through the possible options for when the cancer returns. The disease still cuts most of their lives short.
“You are having to walk that fine line between trying to be as realistic and transparent as possible—and we always try to be transparent—and making sure to relay that there is hope,” Lin said.
Orilio knows the odds are stacked against her, but she is more optimistic now than she was in the beginning. She didn’t look up lung cancer statistics until more than a year after her diagnosis, when the treatment was working and she felt more confident that she might live.
Persistence in Precarity
The teacher, who also coaches track, fights through her fatigue to take high-school students through math lessons and warm-up drills. She no longer demonstrates the long jump, her favorite event, because the cancer has spread to her spine.
In the classroom, she sometimes writes facts about lung cancer on her whiteboard and answers students’ questions: Did she smoke cigarettes? (She didn’t.) Does she still have cancer? (She does.) What about her thick head of hair? (It grew back differently after chemo.)
“I just paint a new image of what stage-four cancer looks like,” Orilio said.
Even the adults in her community often assume she’s cured, said Orilio, who sometimes has to correct them while at her daughter’s weekend soccer games.
When she was diagnosed, Orilio’s co-workers rallied around her and put on a 5K, raising tens of thousands of dollars. Her annual copays of about $5,000 have slowly eaten away at that cushion.
“If the cancer took a turn for the worse, the support would be there,” Orilio said. “But it almost feels a little bit lonely when I don’t have all of the support all the time.”
The house Orilio shares with her husband and daughter is oversize. The couple had planned on having more children. But Orilio started treatment right away because of the cancer’s aggressiveness, leaving no time to freeze her eggs. She wanted to be there for the child that she does have.
Her daughter is now a tween, and Orilio sometimes daydreams about what life will look like when she goes off to college and what she might do in retirement. Other days, she wonders why she bothers to save any money at all. The family does stretch their budget for the sake of fun at times, including during a spring break trip to Universal Orlando earlier this year.
“That was not a cheap trip,” Orilio said. “But it was, you know, making the memories, which is more important to me now.”
In late June, after Orilio’s latest scans showed no signs of trouble, they loaded up the camper and drove to her family’s lake house in New York. The trio paddleboarded, played soccer and ate more ice cream than they are normally allowed at home. A gaggle of extended family joined in mid-July. They celebrated her 42nd birthday.
Aside from taking her daily pill, Orilio hasn’t been thinking about her cancer much. “I have the summer to be free,” she said.
Her next round of scans is scheduled for September.
