What Cancer Survivors Should Know About Survivorship Research: Expert Perspectives

January 26, 2024
Patricia I. Moreno, PhD, and Frank J. Penedo, PhD

Patricia I. Moreno, PhD, is a licensed clinical psychologist and an assistant professor in the Department of Public Health Sciences at the University of Miami Miller School of Medicine. She is also the lead of evidence-based survivorship supportive care at the Sylvester Comprehensive Cancer Center. Frank J. Penedo, PhD, is the associate director of cancer survivorship and behavioral translational sciences and the director of cancer survivorship and supportive care programs at the University of Miami Sylvester Comprehensive Cancer Center. He is also an advisory panelist on the 2023 Cancer.Net Editorial Board. You can follow Dr. Moreno and Dr. Penedo on X, formerly known as Twitter. Dr. Moreno has no relationships to disclose. View Dr. Penedo’s disclosures.

When thinking about cancer research, many people think of studies focused on evaluating new or better ways to treat the cancer itself. What may not come to mind is a type of research known as “survivorship research.” The goal of survivorship research is to understand and improve the quality of life and health in all people affected by cancer. One important area of survivorship research focuses on the period after the completion of cancer treatment and is meant to address the physical, emotional, and social consequences of cancer and its treatment.

How does survivorship research help address common challenges cancer survivors face?

Cancer treatments like surgery, chemotherapy, radiation therapy, and immunotherapy can cause symptoms and side effects that can last long-term, even after someone has completed treatment. Other symptoms and side effects called late effects may emerge for the first time months or even years after treatment has ended. The most common symptoms cancer survivors experience are pain, fatigue, and changes in physical function, including the ability to move around and perform physical activities like walking or climbing stairs. Changes in sleep, attention and memory, and sexual and urinary/bowel function are also frequently reported among survivors.

The direct and indirect costs of cancer treatment can also have a negative impact on a person’s finances, including costs related to transportation or housing. This can result in reduced income, increased debt, depletion of savings, and bankruptcy. This phenomenon, known as financial toxicity, is common among cancer survivors and can further compromise their quality of life.

Additionally, certain cancer treatments can increase the risk for subsequent cancers, known as second cancers, and can have negative effects on a cancer survivor’s overall health, including on their heart health, sexual health, and fertility, or the ability to have children. As a result, cancer survivors often undergo long-term observation, called surveillance, by both specialists and primary care providers to screen for and manage these risks.

Finally, the challenges associated with a cancer diagnosis and treatment can take a significant toll on a person’s emotional well-being. Anxiety and depression are common among cancer survivors, as is the fear of the cancer coming back, known as fear of recurrence. Survivors also often say they want more support coping with uncertainty about the future and concern for loved ones.

Survivorship research is critical because it helps the cancer community understand the long-term impact of cancer treatment and identify strategies and interventions to improve quality of life and address the common challenges that cancer survivors face. Examples of questions that scientists seek to answer through survivorship research include:

  1. What symptoms and late effects may occur after a specific cancer treatment? How common are those symptoms and late effects?

  2. What factors increase the risk for symptoms and late effects after cancer treatment? What factors protect against those symptoms and late effects?

  3. What are the biological, environmental, medical, and psychosocial causes of symptoms and late effects in cancer survivors?

  4. What are the most effective ways to provide follow-up care for cancer survivors?

  5. What approaches improve quality of life and health among cancer survivors and their caregivers, families, and loved ones?

How is survivorship research conducted?

Survivorship research studies can either be clinical trials or observational studies. In clinical trials, cancer survivors are assigned to different groups to compare differences between the groups that can be attributed to whichever intervention is being tested. Clinical trials in survivorship research focus on a wide array of potential interventions, such as exercise, nutrition, referrals to specialists, integrative approaches like acupuncture, support groups, and psychosocial interventions for survivors, their caregivers, and their families. Meanwhile, in observational studies, the experiences of cancer survivors are studied as they naturally unfold without an intervention or assignment to a specific group within the study.

How can cancer survivors participate in research studies?

First, to get the most benefit of survivorship research, it is critical that researchers make sure that there is diverse representation among the cancer survivors who participate in these studies. Diverse representation across gender identity, sexuality, race, ethnicity, physical ability, geographic location, income, education, and other characteristics helps ensure that the results of survivorship research studies are relevant to more cancer survivors.

If you are interested in participating in survivorship research clinical trials, you can visit websites like the U.S. government’s ClinicalTrials.gov or the National Cancer Institute’s (NCI) clinical trials website to find studies that may be available to you. Although websites like these are not widely available for observational studies, opportunities to participate in observational survivorship research studies can be identified through patient advocacy organizations and NCI-designated cancer centers.

You can also ask your oncologist or other members of your health care team about survivorship research studies in which you may be eligible to participate. Or, you may see opportunities to participate in survivorship research on social media, television, or online, as some scientists advertise their research studies on these platforms.

Be sure to talk with your health care team about what survivorship research studies may be right for you. Learn more about finding general and cancer-specific clinical trials.

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