Last fall a report in the journal Nature caused a stir. The authors surveyed cancer registries across 44 developed nations and found a strong rise in cancers among people aged 18 to 49. The CEO of the American Cancer Society described the report as “a call to arms.” Oncologists often refer to cancers among younger adults as “early onset,” as the rise in cancer among younger individuals contradicts the usual pattern of cancer diagnoses increasing as the population ages.
For Veda Giri, MD, Director of Yale Cancer Center and Smilow Cancer Hospital’s newly formed Early Onset Cancer Program, the report emphasized the importance of addressing early onset cancers. “Early onset cancers represent a substantial proportion of overall cancers in the population and span cancer types,” said Dr. Giri.
When Dr. Giri surveyed Smilow’s patient records from the last two years, she discovered approximately 1,300 cases of early onset breast cancer, about 600 cases of early onset gastrointestinal cancers, and close to another thousand cases across other cancer types. “It’s a real issue that has to be prioritized,” she said. Hence the need for the new program at Yale Cancer Center and Smilow Cancer Hospital. The Early Onset Cancer Program will focus on patients with cancer diagnosed between 18-49 years and has far-reaching goals to address their psychosocial needs, develop novel clinical care models, enhance clinical trials, expand research, and raise community awareness about early onset cancers. Prior to coming to Yale, Cancer Center Director, Eric Winer, MD, envisioned this need and described a comprehensive program for younger individuals with cancer in his vision statement. Initially, the program will focus on patients with early onset breast and gastrointestinal cancers, the two most common among this age group. However, Dr. Giri plans to move quickly to include the entire spectrum of early onset cancers.
"This population deserves dedicated efforts from multiple perspectives, including clinical research, psychosocial services, and the best possible oncology care.”
Dr. Veda Giri
Patients with early onset cancers face unique challenges. Their cancers tend to be more aggressive and may be less responsive to treatment. They must manage a shocking diagnosis and intensive treatment, while at the same time, may have the demands of parenthood and a career; many are also caregivers to aging parents and struggle with finances. The combination can strain mental health. “This population deserves dedicated efforts from multiple perspectives,” Dr. Giri added, “including clinical research, psychosocial services, and the best possible oncology care.”
Nancy Borstelmann, PhD, MPH, LCSW, the new program’s Co-Director notes that younger adults diagnosed with cancer have distinct age-related stresses—for instance, worries about how chemotherapy might affect their fertility, or how a long treatment regimen might interfere with their ability to work or care for their children. Women with certain cancers may need extensive surgery impacting their reproductive organs. Following a diagnosis of prostate cancer, men may be worried about how treatment will affect their fertility or bladder function. Body image, sexual health, and other quality-of-life concerns must be addressed.
“Patients would have received a devastating diagnosis,” said Dr. Borstelmann, “and as they listen to the medical team talk about the trade-offs of different approaches, it is a lot for the patient and their family to work through. An important part of our program development will be to help patients navigate this complex path.”
Drs. Giri and Borstelmann emphasize that the program will be especially attentive to the issues of disparities and health equity. “Any challenges that patients face about their diagnosis, treatment, and psychosocial needs are exacerbated among individuals with limited resources or from underserved communities. These challenges must be addressed to ensure equitable cancer care,” said Dr. Giri.
A key component of the new program will be a dedicated patient navigator, now being recruited. This navigator will be the point-person for all patients with early onset cancer, starting immediately upon their referral and as needed through their clinical care and into survivorship. The navigator will work together with the program’s transdisciplinary team to make sure that patients with early onset cancer get the support they need, from help scheduling appointments to finding transportation, childcare, or counseling. There are several initiatives already underway in this newly developed program. A team that includes social workers, psychologists, physicians, nurse coordinators, community health workers, supportive care services, integrative medicine, psycho-oncology, and administrators is developing plans to address the psychosocial needs of younger patients. Drs. Giri and Borstelmann have found strong interest among Smilow’s specialists to participate in the program. Dr. Giri underscores that, “The program is very translational and transdisciplinary. We plan to implement innovative oncology care and research for patients with early onset cancers across the Yale New Haven Health System Network.”
It will take a comprehensive team to address the unanswered questions regarding the rising numbers of early onset cancers. “A big facet of our program,” said Dr. Giri, “is to develop a research arm to push forward our understanding of what initiates these cancers and drives them, and to identify better treatments.” She and Dr. Borstelmann intend to recruit patients with early onset cancer, prioritizing medically underserved patients, into clinical trials and population studies to derive answers that are meaningful across populations.
Furthermore, Dr. Giri also expects to enroll many patients in genetic testing studies to uncover potential hereditary genetic drivers. Population science research is critically needed to expand awareness of early onset cancers, cancer screening, and factors impacting cancer screening strategies, such as family cancer history and genetic testing. Early onset cancers might be harder to treat partly because they are discovered at an advanced stage when treatments may be more challenging. Education about cancer risk and tailoring age to begin cancer screening could make an impact on improved outcomes. For example, family history of cancers can inform younger ages to begin screening for multiple cancers, such as breast cancer, colon cancer, and prostate cancer.
“We are planning initiatives to educate the community to understand their family history, and to know the factors that raise the risk of cancer at a young age,” said Dr. Giri. “We also need to educate physicians to take thorough family histories from their patients and to make appropriate referrals for screening and genetic testing.”
Drs. Giri and Borstelmann are confident that now is the time, and Yale Cancer Center and Smilow Cancer Hospital are the place to establish a cutting-edge Early Onset Cancer Program that will become a national model for managing these challenging cancers among younger individuals and supporting the patients with expert psychosocial care and superior outcomes.