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.

The NCI has also focused on addressing gaps in survivorship science. The institute recently funded eight studies on survivorship needs—ranging from the benefits of overnight fasting to telemedicine in rural communities. “We hope that through NCI’s efforts, we will address gap areas identified by this community and the researchers and clinicians providing care for the community,” Mollica said.

Putting Research in Context

Feldman applauded the NCI’s survivorship research, but she also argued the survivor experience should be incorporated into all cancer research.

Feldman noted clinical trials that investigate new therapies look at survival and safety but often overlook patient quality of life. “Living longer doesn’t automatically equate to living better,” she said.

If clinical trial participants experience mild or moderate side effects, the treatments are often approved because the reactions are considered tolerable. However, she said, no reasonable person would consider the pain, urgency and emotional distress that comes with moderate diarrhea to be tolerable. “Regardless of the grade of these side effects, some of them can be debilitating,” she said. Feldman said the one-size-fits-all approach to drug dosing can lead to high toxicity in some people that forces them to abandon the therapy. “Patients can only benefit from the treatment if they can stay on it,” she said.

Beyond side effects, oncologists need to consider the patient as a whole person and think about the questions that keep them up at night—like “Will I still be able to play with my children?” or “Will treatment affect my appearance?” Feldman said her children were devastated that she could no longer play basketball and soccer with them. While pulmonary rehabilitation could have helped her potentially return to those activities, her care team never suggested it.

Feldman said research should be about people, not collecting data points. The recent push for clinical trials to track patient-reported outcomes, or health data that come directly from participants, can help balance survival and quality of life, she said. Examples of patient-reported outcomes include patient descriptions of their physical symptoms and how treatment impacts their mental health. “They tell you what the clinical data can’t. They complete the story,” Feldman said of patient-reported outcomes, noting the only reliable source for information about the patient experience are patients themselves.

“Cancer is what changes a person’s life, but survivorship is what defines it,” she said. “Research needs to reflect the reality of the lived experience because if we aren’t measuring what matters and survivorship research is an afterthought, we all lose.”

Accepting Uncertainty

One common problem survivors face is the uncertainty around how long they will live. Studies show most people with cancer want to know how long they are expected to live and how treatment will impact the time they have left, according to Areej R. El-Jawahri, a hematologist-oncologist at Massachusetts General Hospital in Boston.

It’s not always easy for doctors to give people with advanced or metastatic disease clear answers about their prognosis, especially given constantly changing treatment options. “In the era of novel therapies, targeted therapies, immunotherapies, we have a lot more prognostic uncertainty in oncology,” El-Jawahri said. In fact, research found more than 75% of people with advanced cancer struggle with prognostic uncertainty, not knowing how the disease is likely to progress.

To help survivors overcome the anxiety that accompanies prognostic uncertainty, oncologists can work with them to achieve prognostic awareness, which is when a patient understands and accepts their prognosis. While someone may learn their prognosis in a single doctor’s visit, gaining prognostic awareness occurs over time, according to El-Jawahri. “It’s not just about cognitively understanding that my life expectancy might be limited, but how do I emotionally integrate that information to really affect my life decision-making,” she said. People with advanced disease often experience a “coping pendulum”—oscillating between optimistic hope and acceptance—which allows them to assimilate their prognosis over time, according to El-Jawahri.

El-Jawahri said gaining prognostic awareness is crucial for people with advanced cancer, as it allows them to know how to spend their time and to communicate their final wishes to their loved ones. Additionally, research shows people who have a good understanding of their prognosis have better quality of life, are more likely to discuss their end-of-life wishes with their care team and are less likely to receive aggressive therapy at the end of life.

Integrating palliative care specialists into care early can help patients cultivate prognostic awareness, according to El-Jawahri. Additionally, oncologists can help people with advanced disease better understand their prognosis by having multiple conversations over time and discussing the patient’s hopes and anxieties. One strategy involves having the oncologist outline the best case, worst case and most likely scenarios. This allows the patient to better understand the possibilities and then plan for each potential outcome with their doctor.

Thomas Celona is an editor at Cancer Today.