The true cost of young cancer

Rebecca Siegel still remembers the moment it started — a flash of data on her computer screen that stopped her cold.

It was 2008, and Siegel, then a young epidemiologist at the American Cancer Society, was preparing a report on colon cancer. Since regular colonoscopies became routine for people over 50 in the 1990s, colon cancer had been a point of pride in the gloomy world of cancer news. Tumors were caught sooner, and pre-cancerous polyps could be removed before they turned deadly.

On a whim, Siegel pulled up the data for people under 50. What she saw shocked her: More than 10,000 people in their 20s, 30s, and 40s had been diagnosed with colon cancer that year. The number was relatively small, but it had been climbing steadily for over a decade.

"This is big," Siegel remembers thinking. "Something changed."

She was right, though it would take another decade before the medical community took action. In 2018, the American Cancer Society recommended lowering the age for colon cancer screening to 45, spurred in large part by Siegel's work.

The development put "young cancer" at the top of the agenda. Researchers and clinicians started interrogating data for other cancers, asking if our modern lifestyles were driving an "early-onset cancer epidemic," as one paper put it. Scientists noted an uptick in cervical cancer among women in their 30s, and more stomach cancer and melanoma in people in their 40s. Cancer centers focused on patients under 50 began to sprout up at hospitals across the country.

Is it an "epidemic" driven by modern life? The real answer is a little stickier. Some young cancer diagnoses can be explained by lifestyle, and others are due to more detection. Advances in genetic testing and the increased use of MRIs have allowed us to catch more cancer much sooner. Still, experts say screening can't explain everything. Something mysterious does seem to be driving up cases of colon cancer.

Whatever the cause, the costs are enormous.

Most people in their 20s, 30s, and 40s don't have the kind of nest egg, pension, or Social Security checks that an older patient might have. Nor do they have Medicare. If they're insured through work, keeping their job is essential to ensure treatment. A young cancer diagnosis will cost a person, on average, $250,000 over a lifetime, according to one 2021 report by Deloitte. Many will go bankrupt or empty their retirement savings just to keep up with the costs of care.

The crisis doesn't just fall on the individual — it's reshaping the entire healthcare ecosystem. This year, employer-based healthcare premiums are up 9%, the largest increase in more than a decade. While weight-loss drugs are a big part of that, 88% of employers rate cancer as their biggest healthcare cost concern. Even if you don't have cancer, you're paying for it.

Business Insider has been tracking this all year. We've reviewed hundreds of studies and interviewed leading oncologists, epidemiologists, medical directors, and research scientists, as well as caregivers, startup founders, and economists. We've spoken to dozens of people living with young cancer.

Our reporters kept hearing the same thing from patients: "I can't afford to be sick."

The bottom line is that more Americans in the prime of their lives, with careers, mortgages, and kids, are navigating cancer treatment. It's incredibly stressful, destabilizing, and financially perilous for them, and it's also impacting our entire healthcare system.

A lot of the young people getting cancer today are part of the "avocado toast" generation.

They're the test case for a health system built on personal responsibility. Expected to make smart decisions about their health — eat healthy, get plenty of exercise, avoid cigarettes and alcohol — they've also been saddled with more student debt, less job security, and ballooning housing costs.

They're also the test case for how we tackle rising cancer rates among younger people. Millennials are now twice as likely to test positive for colon cancer during their lifetime as their chain-smoking, steak-eating grandparents. They're four times more likely to be diagnosed with rectal cancer. And millennial women are more than twice as likely to get a uterine cancer diagnosis as their grandmothers were, federal statistics show.

Take John B. Johnson, a 37-year-old brand consultant in Cleveland.

Two years ago, Johnson considered himself to be in the best shape of his life. He ate a plant-based diet and had qualified for the Boston Marathon. He and his wife had an 18-month-old girl. In a few weeks, they'd get the news that a baby boy was on the way.

When Johnson spotted what looked like a drop of red food dye in the toilet, he chalked it up to the beets he ate regularly. But it kept happening. The days after learning he had stage 2 colon cancer were a blur. After years of limiting carcinogenic nitrates and alcohol, Johnson remembers devouring barbecued meat, washed down with tequila, and questioning everything. "I think it was a valid response to finding out that you had cancer, but it wasn't a helpful response," he says.

Like one in 10 Americans, Johnson was also his own boss. He runs a small design agency with a handful of junior employees.

He had health insurance through his wife's employer, but no paid leave or back-up leadership. When he didn't work, projects stalled, and there was no one pitching new clients.

To keep his business afloat, Johnson planned his chemotherapy so that the worst side effects would strike over the weekend. Every other Wednesday for four months, Johnson would start his slow-drip of chemo. If he was lucky, the most intense bouts of nausea wouldn't begin until Friday afternoon. "Through the weekend, I was pretty much out of it," Johnson says. The routine allowed Johnson to return to work every Monday.

This meant his wife took the brunt of childcare. When their son was born a month and a half after Johnson finished treatment, he took just one week off from work.

Even as his company lost business, he was able to keep things afloat. "It did get really close to failing," especially toward the end of his treatment, he says. "The month that I found out the cancer was gone, we were at $0, and it was not looking up."

For six months, he didn't cut himself a single paycheck. He says it's "almost a miracle" he's still in business today.

Johnson laments that there really isn't much in the way of support for small business owners with cancer. He wishes there were grants or other programs to help ease the burden.

Ever optimistic, Johnson looks back on his treatment as a challenge that pushed him to be better. "It made me a better business owner, made me a better leader," he says. "But I wonder: what if I had a little bit of support?"

As employers confront the rising costs of cancer treatment, a wave of startups is stepping in, promising to streamline care, cut costs, and improve outcomes for employees.

One of the biggest players in this $130 billion sector is Color Health, a virtual clinic that offers end-to-end cancer care, from genetic testing and screenings to oncology appointments and after-care. The goal is to detect cancer sooner and coordinate treatment more efficiently, saving money for employers and time for patients.

Color's success is proof that the situation has become "untenable" for employers, says Othman Laraki, Color's CEO and cofounder, who was previously a product lead at Twitter and Google. Its partners include United Airlines, Red Bull, and toymaker Hasbro, and the company has seen a fivefold increase in patients this year.

"I think it really does start with managing cancers early and proactively," Laraki says.

Erica Hoffman, a 49-year-old distribution manager for Red Bull in the San Francisco Bay Area, received genetic testing through Color in her early 40s. She learned she was at high risk of developing breast and pancreatic cancers. Her mammograms came up clean, and Hoffman and her doctors went back and forth about preventive surgery.

When her husband was diagnosed with bladder cancer at 60, her first thought went to the couple's 10-year-old daughter. "Your husband has cancer, you can't get cancer," a friend told her. Hoffman scheduled a preventive mastectomy.

The surgery seemed to go well. Afterward, an aggressive stage 1 tumor was discovered in tissue from her right breast.

During the first half of 2025, Hoffman and her husband were in chemotherapy. "It was go time," she says of the survival state they lived in, amid the brain fog, nausea, and exhaustion. "You just go and do the best you can."

For all the hardship, Hoffman had a lot going in her favor.

She and her husband hit their deductible almost immediately, so their insurance covered nearly all treatment costs. Through the state, she was eligible to take 19 days of short-term disability. Red Bull also provided Hoffman with a nurse navigator, through a company called Lantern, to help set up appointments for Hoffman and her husband and reduce the paperwork that came with organizing cancer care.

Color set her up with a nutritionist to help her shed some of the weight she gained during treatment, since it's a risk factor for the cancer to come back.

"I'll be honest with you. Had I not been with Red Bull, I don't think my husband and I would be doing as well," she says.

The couple's community also rallied. Coworkers sent flowers and gift cards, and friends dropped off food. When it became impossible to drive Hoffman's daughter to soccer practice — once a highlight of her day — a friend from a women's group stepped up. A neighbor, whom the couple had hardly known before their diagnoses, began showing up once a week to tidy up their home and do laundry, no questions asked.

She's glad they already had life insurance when they were diagnosed. Their rate is locked in, assuming they never miss a monthly payment. Young people who want to buy a life insurance policy after a cancer diagnosis are likely to pay more and might be denied outright.

Today, Hoffman is out of the woods, at least for now. But she worries about secondary cancers, especially pancreatic cancer, which runs in her family, and the chance that their daughter will get sick one day, too.

"I'm very scared," she says. "I am constantly thinking the worst."

Figuring out which genes, life events, and environmental stressors fuse to create cancer — and how best to treat it — has fueled a big market.

Genetic testing companies sell $1,000 blood tests, such as Galleri, and Prenuvo offers full-body scans for $2,500.

Some researchers, including Siegel, warn those aren't the cheapest — or even the best — solutions. As cancer becomes a reality for more people in the prime of their lives, it's crucial that we discern who needs a test and when, Siegel says. "So you're diagnosing cancers that are higher-risk and are more likely to cause death," she adds.

While many things about cancer remain mysterious, there is a lot that we do know.

Many cancers can be largely explained by our lifestyle. For example, researchers have found that 60% of endometrial cancers are due to excess body weight. There are clear links between breast cancer and alcohol, as well as both risks and benefits of later first pregnancies.

There is clear evidence that some habits — a diet rich in fiber and whole grains, as well as coffee, vitamin D3, and regular exercise — can help reduce the risk of cancer by lowering inflammation, among other benefits.

There are some harder-to-pinpoint aspects of modern life, which may be driving colon cancer specifically. Researchers cite ultra-processed diets, air pollution, microplastics, artificial light, antibiotics, and sedentary lifestyles as possible factors, even if they're only part of the story. Some researchers studying colon cancer are homing in on the gut microbiome.

As Yin Cao, a leading colon cancer researcher, put it: "You need a more system-wise change in what they are breathing, they're eating on a daily basis."

For now, the fixes — both for the biology and the economics — fall on the individual. Have "good" insurance. Get secondary insurance. Eat a clean, often costlier and less convenient, diet. Consider preventive testing. Deal with the long-term damage, the secondary cancer risks, poor fertility, and higher life insurance premiums.

After Johnson, the Ohio architect, completed his treatment, he got back into the groove of his life. He launched Get off My Butt, a foundation designed to dispel the stigma around seemingly embarrassing colon cancer symptoms.

He's still worried about cancer coming back. As a survivor, he's at a heightened risk of getting colon cancer — or some other cancer — again. But he wants to make sure that, if it does, he'll be in the best shape of his life — physically, financially, and mentally.

In April, he finally got to run the Boston Marathon. His running partner was his surgeon.