'It doesn't wow us anymore': Experts on what healthcare needs more of as cancer strikes younger

For many, recent headlines on cancer rates rising among younger adults have been jarring. But those working in oncology have had their eyes on worrisome trends for more than a decade.  

"Now, to see someone in their 20s and 30s, it doesn't wow us anymore," Nancy You, MD, a professor of colon and rectal surgery at the University of Texas MD Anderson Cancer Center, told Becker's. She also leads the Houston-based institutions' young-onset colorectal cancer program.

The American Cancer Society projects the U.S. will see more than 2 million new cancer diagnoses in 2024 — a record high. Over the years, national data has shown diagnosis rates are rising among people younger than 50. From 2000 to 2019, the rate among this group jumped nearly 13% to 107.8 per 100,000 population. Colon cancer trends have been particularly concerning, with the proportion of diagnoses among people younger than 55 increasing from 11% in 1995 to 20% in 2019. 

"Even when I was a fellow in 2008 at Mayo Clinic, we were already seeing young patients with colorectal cancer, and even then we were writing about the increased rates," Dr. You said. "It's something that's been ongoing, but I'm glad the media and general public are finally paying attention." 

In light of these evolving trends, Becker's spoke to three experts on what healthcare needs to do more of and how the oncology field is adjusting. 

Awareness across the healthcare spectrum 

In 2021, the U.S. Preventive Services Task Force lowered the screening age recommendation for colorectal cancer from 50 to 45. The American Cancer Society had issued the same guidance a few years earlier in 2018, causing confusion and coverage variations among insurers. The USPSTF guidance update essentially ensured screenings would be covered for all insured Americans who are at least 45. 

The experts Becker's spoke to acknowledged lowering the screening age as a step in the right direction. But beyond this, they pointed to the need for further awareness across the entire healthcare spectrum so that patients are steered in the right direction as quickly as possible when they have symptoms — no matter what their age is. 

"A lot of the patients I see who are younger, you hear the story over and over that they have these symptoms for a couple of years and they didn't really think [anything of it]," said Avni Desai, MD, a gastrointestinal oncologist at New York City-based Memorial Sloan Kettering Cancer Center. "They'll think, 'Oh, this is normal or I have hemorrhoids' and sometimes they'll go to their provider with these symptoms, and they'll be told that this is probably just hemorrhoids or you're a little anemic, and it takes a while to really get to that diagnosis." 

Expediting the diagnostic process requires more recognition and coordination on the primary care side, oncology leaders said. For patients coming in with hemorrhoid symptoms, for instance, the care shouldn't stop at writing a prescription for the issue. Instead, first line providers can support advanced care coordination by having proactive plans in place when a patients' symptoms, such as bleeding during bowel movements, don't resolve quickly.

"We have to make sure that the symptom resolves and if it doesn't, there needs to be a follow-up plan offered to the patient on the first encounter," Dr. You said. "That is where I think a lot of improvement can happen."

Studies indicate that a lack of early recognition and coordination is likely linked to an increase in the proportion of colon cancer cases that are diagnosed at a more advanced stage. In 2019, 60% of all new cases were advanced, compared to 52% in the mid-2000s, according to an American Cancer Society report published last spring, which also pointed to challenges in identifying early colon cancer symptoms among younger patients. 

"A study of symptomatic patients found a 40% longer time to diagnosis among individuals younger than 50 years versus older individuals, including both longer duration of symptoms and work-up time, often because of misdiagnosis with more common conditions," the ACS report said. 

Such reports speak to how — on both patients and providers' part — cancer is still not considered to be in the realm of likely possibilities when younger patients present with symptoms of colorectal cancer. 

"There has to be continued education on potential early signs and symtpoms," as well as improvements in identifying those at increased risk, said Sonia Kupfer, MD, who leads the gastrointestinal cancer risk and prevention clinic at UChicago Medicine.

Identifying a larger proportion of patients with a family history of colorectal cancer early on is a piece of low lying fruit, experts said. For those that do have a family history, guidelines recommend screening start at age 40 or 10 years before the age that an immediate family member was diagnosed. 

"We're missing people that way … [there are] missed opportunities where there is a history or there are other features that should clue us in and we just don't know about it, so we have to think along the entire spectrum," Dr. Kupfer said. 

Integrating supportive services 

Ten-plus years ago, Dr. Desai said she and her colleagues in gastrointestinal oncology didn't need to think as much about certain supportive services like fertility and family planning. Now, experts say close coordination with partners in a range of supportive areas such as psychiatry and social work is becoming an increasingly important part of their work as cancer rates rise, especially among younger adults. 

"We've had to rethink some of what we do," when it comes to considerations around younger patients' quality of life and individual priorities, Dr. Desai said. "Younger patients often have different priorities. They [are thinking about working,] but also having the time to take care of their family. They may have younger children," or may still be thinking about having children. 

"While I can treat cancer, we really need everyone else to help with how someone is navigating the illness — the day-to-day aspects of it," Dr. Desai said. "It really makes a really big difference."

Trends in colon cancer shifting to more advanced disease have made enhanced collaboration with supportive services critical. 

"The medical piece itself tends to be more complicated for younger patients," particularly when they present with stage 3 and 4 disease, Dr. You said. While surgery tends to be the mainstay therapy for stage 1 and 2, advanced stages involve the addition of chemotherapy and radiation. "Figuring out the right sequencing of those components, and balancing that with patients' desires," adds another layer of complexity, she said.

Balancing priorities

Amid perturbing trends, Dr. Kupfer maintains a glass-half-full mindset. 

"If we identify things early, we have a good shot in terms of outcomes," she said. "People now are being recommended to come in at 45 [for screening] and I'm finding precancerous polyps that, if they had waited a few years, probably would have become cancer. … That is incredibly satisfying to think that by a simple procedure that has removed a polyp, I've hopefully averted a diagnosis like colorectal colon cancer."

On the clinical side, experts say screening, early detection and treatment are the key areas of focus to ensure the best outcomes. But ultimately, reversing the trend of rising cancer rates will require continued investments in research to identify specific culprits — a task that has proved much more  complex relative to the unraveling of rising lung cancer deaths in the 20th century, when smoking was identified as a key driver. More inactive lifestyles and ultra-processed foods are among the factors researchers suspect are contributing to increased cancer risks for younger generations. 

"There is something about our lifestyle that is driving this, but exactly what it is remains unknown, and maybe a combination of a whole lot of things that are compounded and leading to higher development of cancer," Dr. Kupfer said. "The way in which we are going to combat these trends is we have to find out why they are happening. … What environmental factors are we being exposed to? Can we identify them and reduce those for the population?"

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