Subtle Early-Onset Cancer (EOC) Burden Rise, Significant Mortality Drop

Cancers diagnosed in younger individuals (early-onset cancer) are reportedly on the rise at the same time that cancer mortality is falling, fundamentally changing the approach to cancer prevention and early detection as well as the long-term survival of patients. SCREEN, TREAT, & SURVIVE, a conference & exhibition, brings together healthcare professionals from all sectors, industry partners, support groups and patient advocates to explore the latest screening strategies, advancing treatments and survivorship concerns for early-onset cancer. The conference will also address optimal screening strategies, tackle issues of inequality, and discuss the issues of access and ensure that all patients have an equal chance of receiving the best quality of care.

Recent Research

Using data from the Global Burden of Disease (GBD) 2021 study, researchers mapped the trends for early-onset cancer (EOC) in 204 countries. Focusing on 31 different types of cancer, they found several trends worth noting. Most striking perhaps is how these numbers challenge global health to rethink its priorities.

Why It Matters

Early-onset cancer (EOC) fundamentally changes the life trajectory of young adult patients whose developmental years are focused on completing their education, establishing their careers, and starting a family, including getting married and having children. The increasing incidence of cancer in younger age groups has implications for other sectors as the reduced mortality rate for young patients with cancer is celebrated but the increased numbers of young survivors and their families face years of potential late effects from cancer and its treatment. The long-term effects of cancer may include chronic health conditions and symptoms; physical dysfunction (e.g., cognitive, hearing, or vision) and late effects from treatment; and a variety of psychosocial issues.

What the data says

Endometrial cancer incidence is not increasing uniformly across the world’s regions and is clearly associated with the socioeconomic development of a country or region. The age-specific incidence rate (AsIR) was highest among high-income, high-sociodemographic index (SDI) countries. High-income North America accounted for the largest proportion of increasing incidence for two of the world’s most common cancers: uterine cancer (APC 1.12) and nonmelanoma skin cancer (APC 1.03). While high-income countries have the highest numbers of endometrial cancer cases, high-middle SDI countries have the highest age-specific death rates (AsDR). The results provide clear insight into global health inequities.

Economic and Social Burdens

Although rare, the increasing incidence and mortality rates of rare cancers place a growing economic and social burden on patients and the healthcare system relative to more common cancers like epithelial ovarian cancer (EOC). While the most common global incidence and mortality for EOC remains breast cancer at 14.38 and 3.32 per 100,000, respectively, and increasing, other cancer types are also experiencing rapid increases in incidence. The most increased global incidence of prostate cancer (APC 0.87) and the most increased global death rates of neuroblastoma and other peripheral nervous cell tumors (APC 0.66) were identified.

Healthsystem Perspective

From a healthsystem perspective, the health outcomes of increased cancer incidence will translate into increased demand for services for diagnosis and treatment as well as increased complexity of care for survivors. In the short-term, there will be more patients in need of long-term follow-up and rehabilitation as well as fertility preservation options and mental health and psychological care. As such, survivorship programs will need to scale up to meet the needs of increased numbers of survivors and to coordinate care and services delivered by a multidisciplinary team over a longer period of time. This will require continued funding, professional training, and workforce capacity. But advances that decrease cancer mortality are expensive. Who will have access to these advances and how will they be paid for by payers?

Policymakers and Public Health Leaders

Considerations for making cancer screening recommendations include balancing the potential benefits of earlier curative treatment with the possible negative consequences of increasing the detection and treatment of cancers that may never cause harm. Modifying the screening age for a particular cancer or including additional risk groups in a screening program may help more cancers be detected at an early stage but could also increase the detection of potentially unnecessary treatments and drive up health care costs. Every cancer screening policy has implications for equity, and it is especially important to consider the implications for underserved and minority populations who may face considerable barriers to cancer diagnosis and treatment.

Who It Affects

Patients

Young adult cancer patients have special clinical and life issues. Considerations for patients and providers include issues of fertility preservations and family planning, employment and patient rights, and long-term toxic effects of cancer and its treatment. The concept of cancer survivorship means something different for a younger person than for an older person, because young patients have their own family responsibilities, employment, and health insurance (or that of their parents). Young patients and their families also consider how cancer diagnosis and treatment will impact their relationships, usual ways of meeting daily responsibilities, and financial situation.

Gender and Regional Disparity Findings

EOC is not isolated to women alone but the available data clearly shows a marked preponderance of the disease in the fairer sex. For 2021, the AsIR and AsDR for women (875.64 and 26.14 respectively) was found to be higher than that for men (327.33 and 24.11 respectively). The high incidence rates of EOC can be attributed to the common female specific cancers such as breast cancer, cervical cancer and uterine cancer.

Regional disparities are equally impactful:

• Low-SDI Regions: Cervical cancer remains the primary burden, accounting for the highest AsIR (8.69) and AsDR (3.42).
• High-SDI Regions: Nonmelanoma skin cancer has reached an AsIR of 65.17, likely due to a combination of fair-skinned populations, increased UV exposure, and superior diagnostic infrastructure.
• Risk Factors: Tobacco remains the leading cause of EOC-related deaths (10.77%), but the influence of metabolic factors is exploding. Deaths attributable to high BMI increased by a staggering 92.78% between 1990 and 2021.

Clinicians and Healthcare Providers

Future health care practices for young adults with brain and CNS tumors will require that all health care practitioners, including the primary care physician, oncologist, surgeon, radiation oncologist, and allied health practitioners, revise their clinical thinking regarding the likelihood of brain and CNS tumors in young adults and their referral practices. Primary care physicians will be the first line of defense in identifying young adults with atypical symptoms of illness and will need to recognize the clues suggestive of these neoplasms. In addition, oncologists must determine whether the likelihood of cure outweighs the potential adverse and lasting effects of treatment on quality of life for patients who are likely to survive for many years.

Healthsystems and payers

Future services that may be needed in hospitals, physician practices and clinics that treat young women with cancer include survivorship care management and/or rehabilitation services as well as services addressing the reproductive health needs of young women diagnosed with cancer. Future services that payers will consider in making coverage decisions for young women with cancer include: expensive targeted therapies and/or immunotherapies for the treatment of advanced cancer; services and interventions that support the preservation of fertility in women diagnosed with cancer; and long-term mental health care interventions. Future implications for employers and disability insurers may include: modification of sick leave policies and workplace reasonable accommodations to accommodate the needs of employees and insureds with cancer; the development and implementation of return-to-work programs for individuals with cancer.

At-risk population groups

While any person can develop an early-onset cancer, some early-onset cancers may be influenced by specific risk factors such as genetic factors, lifestyle factors, environmental exposures, and social determinants of health. SECA will also focus on cancer prevention and outreach efforts in communities where certain risk factors for cancer are more prevalent to ensure that health disparities do not worsen.

What Changes

• Lower threshold for diagnostic evaluation in symptomatic younger adults: clinicians should consider expedited workup when symptoms are persistent or unexplained, rather than assuming age alone rules out serious disease.
• Scale up survivorship planning tailored to younger patients, including fertility counseling, long-term toxicity monitoring, vocational rehabilitation, and mental health support.
• Policymakers should re-evaluate screening ages and access policies with a focus on equity and careful assessment of harms and benefits before broad implementation.
• Healthsystems and payers must expand coverage for supportive services: supportive services include fertility preservation, genetic counseling, and integrative survivorship care, and they are all needed to manage the long-term needs of a growing survivor population.

Clinical decision-making is becoming more nuanced

As survival improves, the cure becomes less the sole focus and function and quality of life becomes paramount. De-escalation of therapy, fertility-sparing therapy, and early palliative care are potential components of treatment planning. Shared decision-making becomes more complex as patients weigh probabilities of response to different options but also the impact on work, family, and future health.

Prevention remains central

Many of the risk factors for cancer in young adults are modifiable. Obesity, inactivity, alcohol consumption, tobacco use, infections, and other exposures all have the potential to impact cancer risk. Public health efforts that promote healthy weight, tobacco control, cancer prevention vaccines, healthy environments and communities can all have an impact on cancer incidence rates over time. Additionally, efforts must be made to reach communities of color and low-income communities and address the structural barriers that prevent these populations from accessing healthy behaviors.

Equity must be an organizing principle

Decades of gains in mortality from cancer may mean little if these gains are not translated into gains in access to curative therapy and survivor-focused services. To ensure that the health system is meeting this promise, tracking of cancer outcomes by demographic subgroup is critical. Systemic barriers to cancer access include lack of insurance, as well as more practical issues such as transportation, child care, limited language services, and geographic shortages of specialists in key disciplines. Professionals such as genetic counselors, social workers, and patient navigators can identify and address the many issues that patients and their families are facing in the cancer care system.

Looking ahead

Surveillance and data systems will be important. Health authorities and health systems will need to invest in tracking and monitoring these data in a timely fashion to see who is developing cancer early and why. The information will be important for informing prevention strategies, updating cancer guidelines, and ensuring optimal allocation of limited health system resources. New technologies, a broader role for genomic risk assessment, and improved biomarkers and non-invasive technologies will allow for screening of individuals at greatest risk of cancer, rather than a universal lowering of the screening age.

Adaptable Workforce and Financing Models

Future cancer survivors will need monitoring and care from long-term follow-up physicians/surgeons, rehabilitation professionals (e.g. physical, occupational, cognitive), fertility specialists and/or mental health professionals. Survivorship programs will require payment models that REWARD providers for delivering coordinated and comprehensive evidence- based survivorship care. Value- based purchasing and payment for entire cancer care “episodes” or “bundles” could strongly encourage survivorship care pathways that are most cost-effective and optimize duration and quality of survival.

Impactful and meaningful Communication

Communication between clinicians and public health communicators is important. Clinicians and public health communicators will need to clearly and accurately inform the public and patients with cancer and their families about these modest trends in early-onset cancer incidence and mortality. A cancer that is not as lethal as previously may not be as severe, but still clearly requires effective management. Many different sectors and stakeholders will be called upon to educate patients and families that some of their symptoms need to be evaluated; to educate policymakers about the need for our cancer care system to adapt to these changes; and to educate employers and insurers about the potential need for reasonable accommodations at work and leave from work for patients with cancer.

Cancer is a problem for the entire system from treatment and care, to prevention and policy-making. With more young people being diagnosed with cancer and surviving it, we must not lose sight of the complex needs of this patient group and their families. They need answers on issues like fertility, mental health, long-term toxicity and the financial implications of cancer and cancer survivorship. And above all, they need equal access to the best possible care.

Smarter cancer prevention and smarter screening and diagnosis are crucial. Continued investment in research and care for people who have had cancer is equally important. And we need sound policies to ensure that everyone has access to and receives the highest quality cancer care and support.