Under-50s cancer patients face system unprepared for them

Cancer rates among adolescents and adults under 50 are rising globally Keystone / Michele Constantini

Cancer rates among adolescents and adults under 50 are rising globally, but many countries, including Switzerland, are struggling to deal with the challenges they pose, from preserving fertility to difficulties accessing financial services.

Samantha Weiss, a trained nurse, was diagnosed with an aggressive form of the blood cancer lymphoma in 2021, at the age of 35. The news was devastating.

“My world started to collapse,” she says. “One minute I am in the prime of my life – I have a good job, a successful career, I have just bought a house with my husband – the next, everything I have built is at risk.”

Although still rare, such cases are becoming increasingly frequent. Data showExternal link that, globally, the incidence of cancer among 14-49-year-olds is rising, while rates in many older age groups have stayed the same or even declined. In Switzerland, cancers such as colorectal and thyroid have become more common among 15-49-year-olds over the last 50 years.

For adults in their 20s or 30s, a cancer diagnosis often strikes at key moments in their lives – such as finishing education, entering the workforce, or starting a family. “It’s a complete trajectory interruption,” says Christina Grivea, a counsellor at Cancer Support Switzerland (CASSExternal link) who works closely with young adults who develop cancer. “The shock is huge, the disconnect from their peers is huge. They go out with their friends and see them having fun while they are confronting deep, existential questions.”

Cancer is devastating at any age, but for people who develop the disease at a relatively early age, are confronted with a distinct set of physical, psychological, and social challenges that differ from those faced by older patients. Fertility, for example, may suddenly become a concern. “Those under 25 aren’t usually thinking about starting a family, it’s not even on their radar,” says Grivea, but cancer forces them to make difficult choices. “It’s a lot to process – physically and psychologically – while also dealing with treatment.”

Other side-effects from treatment can hit harder too: the physical toll of cancer – such as hair or weight loss, and surgical scars – can deeply impact body image, Grivea adds, at an age when they may still be still figuring out who they are.

What is early-onset cancer?

Cancer cases diagnosed in people under 50 are often referred to as “early-onset”. This is because, statistically, cancer is a disease that mainly affects older adults, with most diagnoses occurring after age 50.

Depending on the study or health system, the early-onset category may start at 18, or include adolescents, covering ages 15 (or sometimes 14) to 49.

The term adolescents and young adults (AYA) is sometimes used interchangeably with early-onset, though its definition varies, most commonly spanning ages 15–39 or 18–39.

Adolescents and young adults (AYA) also experienceExternal link greater post-traumatic stress, anxiety, depression, and fatigue compared with long-term survivors of childhood cancer, and conventional care models are often unable to meet their needs, research shows. In Switzerland, support services tailored to them are fragmented and limited, according to a surveyExternal link conducted by the gfs.bern research institute on behalf of the Swiss branch of the global pharmaceutical company MSD.

These psychological challenges are compounded by practical ones such as difficulty resuming their careers and discrimination in accessing supplementary health insurance, mortgages, and loans, including in Switzerland.

A disease of age

Cancer is, in a sense, a disease shaped by time: the risk increases significantly with age, because typically it takes decades for harmful mutations to accumulate in a single cell, and even longer for that cell to develop into an invasive tumour.

Of the roughly 46,700 new cases of cancer diagnosed annually in Switzerland from 2017 to 2021, almost 90% were found in adults aged 50 or over, according to the latest data publishedExternal link by the Federal Statistical Office. This is why cancer diagnosed in 18–49-year-olds is referred to as early-onset: most cancer types remain statistically rare in this age group.

Grivea runs the under-45s support group at CASS. “We decided to launch a dedicated group this summer because in the last two years we have had so many younger patients,” she says. It’s unclear whether this reflects a real increase in the number of cases or the greater reach of the organisation, she says. But data suggest that cancer before the age of 50 is becoming more common worldwide.

From 1990 to 2019, global cancer diagnoses in adults under 50 rose by79%, and deaths by 28%, according to a studyExternal link published in the journal BMJ Oncology in 2023. The sharpest increases were observed in the Gulf region, where incidence in countries including the UAE and Qatar rose tenfold, although this was partly due to greater screening uptake and better testing. The highest rates, however, have consistently been found in North America, Oceania, and Western Europe.

Cases are expected to continue growing: the BMJ study forecast a 30% increase in early-onset cancer cases worldwide from 2019 to 2030.

In Switzerland, the picture is mixed. While overall cancer incidenceExternal link among 18-49 year olds has remained broadly stable since the 1990s (with small increases among women in their 30s and modest declines among men), certain conditions – particularly colorectal, thyroid, and breast cancer – have been rising in adults under 50.

Researchers have not been able to pinpoint the reasons for the increase in early-onset cancer. In the absence of a clear understanding of the underlying causes that could guide targeted prevention strategies, some experts are turning their attention to screening.

“Cancers in younger patients often present in more aggressive forms,” says Dr Michael Scharl, Chief Physician at the Department of Gastroenterology and Hepatology at the University Hospital of Zurich. Hence, “early detection becomes even more important to improve survival outcomes.”

What’s driving the growth in early-onset cancer?

Doctors and researchers do not have a definitive answer on what is causing the increase in early-onset cancer, but they believe it’s a complex mix of lifestyle, environmental, and biological factors.

They have identified a series of risk factors – including alcohol consumption, smoking, lack of physical activity, and diets high in red or processed meat and low in fibre – that have become more common in recent decades and may explain why cancer is increasing faster among people born after 1950.

Yet statistical analyses suggest that such risk factors cannot fully account for the rise. Some scientists are investigating whether early-onset cancers have different genetic or molecular features compared with those diagnosed later in life. Other research focuses on the link between certain cancers and disruptions to the body’s microbial balance – especially in the gut. Studies have already linked exposure to certain chemicals during pregnancy, such as the synthetic hormone DES, with higher cancer risks later in life; some scientists suspect that similar, as yet unidentified, substances could be contributing to the increase in cancer incidence recorded in the past decade.

Understanding the trend will take time and, above all, data: long-term studies that follow people for decades are needed to reveal meaningful patterns over time, researchers say. But these are costly and difficult to run, requiring multi-country effort and coordination.

Fragmented support, uneven reach

In the clinical setting, international best practice increasingly pointsExternal link to the need for dedicated AYA teams: typically oncology units or multidisciplinary teams that bridge pediatric and adult care, combining oncologists, psychologists, fertility specialists, and social workers.

Countries such as the US, Canada and Australia offer established, coordinated AYA programs. In Europe, the AYA Working group was launched in 2015 as a joint initiative by the European Society for Medical Oncology and the European Society for Paediatric Oncology. The group publishedExternal link a position paper in 2021 defining the minimum requirements for an AYA center and highlighted the inequitable access to services for this age group across different European countries.

In Switzerland, there is as yet no formal programme targeting the AYA age group nor any dedicated AYA wards. However, pilot initiatives have begunExternal link at some hospitals, where interdisciplinary teams address the specific needs of younger patients.

International cancer trials and treatment protocols largely focus on paediatric or older patients, while adolescents and young adults are typically underrepresented. This sometimes leaves patients like Weiss without tailored treatment plans.

“The cancer I had is usually seen in children and teenagers, and then in people over 60. There is limited clinical experience with patients in my age group” Weiss explains.

“So they treated me as they would treat an adolescent, with a really high dose. Sometimes it felt like they were testing how much my body could take.”

Read more on why treating cancer is so expensive in Switzerland:

“Many support programmes in Switzerland are grassroots and locally led, not part of a nationally coordinated strategy. There are many excellent ideas and services, but they remain scattered, experts say. Technically, “everyone can access our [Cancer League] AYA programme, even though it is based in Basel,” says Miriam Döbeli, who coordinates the AYA programmeExternal link at the Basel branch of the Swiss Cancer League. “The challenge is people finding us.”

To address this fragmentation, the AYA Cancer SupportExternal link platform was launched in 2021 to bring together services and resources for young cancer patients. “It’s a young association,” says Döbeli, who is also involved in the project. “But we hope it can grow into a central point of contact – a place young patients know they can turn to.”

Lack of data is another challenge. While Switzerland has extensive data for paediatric cancer and cancer among older adults, it lacks a national registry explicitly tracking early-onset cancer. But without systematic data collection, experts say, it is difficult to identify patterns or design policy responses. Fertility preservation, for instance, is a concern for many patients in this age group. A recent studyExternal link at Bern University Hospital found that only 58% out of almost 400 AYA patients attended fertility counselling sessions.

However, most medical records do not specify why others declined or missed counselling, making it unclear whether they rejected the option, were unaware it existed, or were not adequately informed about it.

Read more on cancer and AI:

High expectations

Although more people in their 20s and 30s are being diagnosed with cancer, a growing number are surviving and facing the long road to recovery. “They have survived, but life is never going to be the same,” says Grivea, herself a survivor: she was diagnosed with cancer in her early 30s.

Because of their age, expectations for a full return to work and everyday functioning are higher, but the long-term side effects of treatment – such as fatigue, cognitive challenges, and heart problems – can add to psychological trauma, making the transition back to work difficult.

“On the one hand, these high expectations are positive: people are encouraged and supported to go back to work, to regain control over the life they had to put on hold,” says Döbeli. “But on the other hand, it’s a lot of pressure,” from peers, society, and a system that focuses on reintegration rather than long-term recovery.

Weiss, who underwent a stem cell transplant in 2022 and is now in remission, says she felt that pressure firsthand. “After the treatment I was expected to go back to work, but I had trouble focusing. Even now I can’t concentrate like I did before,” she says. “People see me and assume I am ok, but my recovery is not complete yet. I am still struggling.”

In Switzerland, employees are usually covered by sick-leave insurance that replaces their income for up to two years, depending on their policy. If that cover expires before they are fit to return to work, they risk losing their job – as Weiss did.

The psychological impact of surviving cancer also needs to be addressed, adds Grivea. “Once the cancer is in remission, people – colleagues, friends – might assume that for survivors it’s all behind them. But it’s not. They need time to process it.”

That’s why CASS works with patients and employers to support the transition back to work and ensure they are not left to navigate it alone, she adds. 

Resilience through uncertainty: Martin Inderbitzin’s story

While support systems and policy changes are essential, young cancer survivors are finding their own ways to rebuild and reframe their lives.

“In a way, my diagnosis taught me a valuable lesson – a new understanding of what really matters and how I wanted to spend my precious time”, says Martin Inderbitzin. In 2012, he had just completed a PhD in neuroscience when he was diagnosed with pancreatic cancer. For his thesis he had studied stress and fear, “but to live it personally was a different thing entirely,” he says.

Since then, Inderbitzin has gone through various cycles of remission and relapse. He describes how his initial combativeness was “somewhat naive” – through the years, it developed into resilience. “I have a checkup every three months”, he says. “It’s up to me to decide how I want to live them: in fear, or making the most of them.” Martin has collected his thoughts and insights as a neuroscientist fighting cancer in a book, Dare to Live.

‘Right to Be Forgotten’

Even after recovery, cancer survivors in Switzerland often struggle to access life and supplementary health insurance. While basic health insurance is guaranteed (and mandatory), providers of supplementary and life insurance can request detailed medical histories and reject applications, exclude certain conditions from coverage, or charge higher premiums based on health risks. This can also impact access to mortgages, as some lenders require such policies.

Several European countries – including France, Italy, Spain, and Portugal – have introduced “Right to Be Forgotten” laws, allowing survivors to omit past cancer diagnoses after a remission period (typically five to ten years). But Switzerland has no such legislation in place, nor any plans or formal discussions to introduce it.
 
Edited by Nerys Avery/vm/ds