*May 2025*
As people with advanced disease live longer, they face physical and mental health side effects. Patient advocates say research and care must focus on their unique needs.
WHEN JILL FELDMAN’S FATHER was diagnosed with lung cancer in the early 1980s, he lived just three months after his diagnosis. Fifteen years later, her mother developed the same cancer and lived six months. Feldman herself was diagnosed with stage I lung cancer in 2009, and she has lived 16 years beyond her diagnosis.
Feldman’s family history with lung cancer shows how much treatment has improved in recent decades. In turn, survivorship itself has changed dramatically. While people like Feldman’s parents lived just months after diagnosis, many survivors today live for years and even decades. However, they increasingly face long-term physical and mental health side effects, which have redefined what it means to be a survivor.
Feldman also represents a growing segment of survivors: those with advanced or metastatic disease. Because her cancer has progressed to stage IV with no available cure, she will be dealing with the disease for the rest of her life. People with advanced cancers make up a growing percentage of survivors, and research is just beginning to explore their unique needs.
Feldman and other speakers addressed the challenges faced by cancer survivors with advanced or metastatic disease during an April 28 session at the American Association for Cancer Research (AACR) Annual Meeting 2025 in Chicago. (The AACR publishes Cancer Today.)
Survivorship Research
Today, there are more than 18.1 million cancer survivors living in the U.S. “The experiences and goals of care for each cancer survivor are unique and dynamic,” said Michelle Mollica, deputy director of the Office of Cancer Survivorship at the National Cancer Institute (NCI). (Mollica gave her presentation via a prerecorded video due to travel restrictions for NCI employees.)
Researchers estimate nearly 700,000 survivors have advanced or metastatic disease and live with incurable cancer. Mollica said people with these diagnoses have many shared concerns: long-term physical symptoms, mental health concerns as they deal with an uncertain prognosis, difficulty coordinating care across multiple providers, financial hardship, and waning caregiver support.
Most NCI survivorship research has focused on people who have completed treatment, but in recent years, the institute has emphasized studying the needs and experiences of survivors with advanced disease, according to Mollica.
In this research, people with advanced cancer described how they feel left out of survivorship services and how providers often do not address their needs, Mollica said. Additionally, this population frequently reported anxiety about disease progression, body image issues, difficulty eating and exercising, fatigue, and sleep problems. Using this feedback, the NCI worked with the Multinational Association of Supportive Care in Cancer and the American Society of Clinical Oncology to produce survivorship care standards specific to this population. Read more.
