How Cancer Survivorship Has Changed Over 25 Years: An Expert Perspective

June 28, 2022
Carlin Callaway, DNP, MS, RN, ACNP-BC, ACNS-BC, AOCNP

Carlin Callaway, DNP, MS, RN, ACNP-BC, ACNS-BC, AOCNP, is an assistant professor and the lead medical oncology advanced practice provider at the University of Colorado Cancer Center. She has more than 25 years of oncology nursing experience. Dr. Callaway has provided care across the entire oncology continuum, from prevention through survivorship and end-of-life care. She has served worldwide as a United States Navy Nurse Corps Officer for 20 years. Her current clinical and research interests are with people who have completed cancer treatment and are transitioning to life after treatment. Dr. Callaway is an advisory panelist on the 2022 Cancer.Net Editorial Board.

This Cancer Survivors Month, as I reflect on my personal 25-year journey as a cancer care provider, I cannot believe how quickly time has passed. 

For me, 1997 seems like it was just yesterday. At that time, paper medical records were the norm. As health care providers, we spent considerable time locating records and double-checking transcribed orders. People could smoke on hospital grounds; I remember spotting my boss 11 floors below doing so. Our hospital cafeteria did not offer the variety of healthy choices that many hospitals offer today. Patient education materials were shipped through the mail as opposed to being easily downloaded from the internet or sent via email. At the time, I did not know that the National Cancer Institute (NCI) established the Office of Cancer Survivorship the year prior, a move that would help change the way we care for cancer survivors today.

How has cancer care and survivorship changed in 25 years?

Cancer care was different in 1997. At the time, people were routinely admitted to the hospital for cancer treatment and managing side effects. Today, the majority of cancer care is delivered in the ambulatory, or outpatient, setting, and oncology-focused urgent care clinics have emerged. 

In 1997, while there were limited options for treating many types of cancer, there were also limited treatments for managing side effects, such as nausea and fatigue. For example, patients who experienced blood clots, which people with cancer are at increased risk for, were admitted to the hospital for days to receive treatment. They had to have their labs checked every 6 hours and remain on bed rest. Today, there are many effective treatments in preventing blood clots in people with cancer.

Palliative care, also called supportive care, was not taught in nursing school or medical school in 1997. But today, this type of care is an integral part of managing the physical, emotional, social, and financial effects of cancer. And, many organizations, including the American Society of Clinical Oncology (ASCO), have developed supportive care and treatment-related guidelines for providers who care for people with cancer.

For cancer survivors, specifically, support continues to evolve. For example, the 2005 Institute of Medicine report, From Cancer Patient to Cancer Survivor, was a positive step toward caring for people after cancer. The report issued 10 recommendations for helping cancer survivors transition from active treatment to life after cancer, including raising awareness, providing survivorship care plans, exploring late effects, testing models of care delivery, and increasing research efforts.

Today, many organizations, including ASCO, have created resources based on scientific evidence for caring for cancer survivors. This guidance from ASCO's Survivorship Compendium, the Office of Cancer Survivorship, the National Coalition for Cancer Survivorship, the National Comprehensive Cancer Network, the American Association for Cancer Research, and the American Institute for Cancer Research help both people who have lived through cancer and their health care teams. Together, partnerships among these organizations have formed, including one between the American Cancer Society and ASCO. Finally, the Cancer Moonshot has been reignited, which aims to improve the experiences of people living with and beyond cancer. All of us in the cancer care community are working hard to make sure cancer survivors have the support, care, and quality of life they need.

What are some of the challenges in cancer survivorship today?

In their 25th Anniversary Report, the NCI Office of Cancer Survivorship outlines several challenges that have been overcome in cancer survivorship. Most notably, NCI has drawn attention to the approximately 17 million people living with a past history of cancer and the work that has been done to draw people together to improve survivorship care and further survivorship research.

Each of these 17 million individuals have had unique experiences that they never wanted to have. And, as described by the NCI Office of Cancer Survivorship, many challenges in survivorship still remain. Many cancer survivors live with side effects even after treatment ends, including fatigue, sexual problems, and nerve problems. Many survivors remain concerned about the chance of recurrence, the financial consequences associated with treatment and recovery, and their increased risk of developing additional cancers. Survivors may also experience emotional challenges, including anxiety and survivor’s guilt.

Thankfully, there are many people, resources, and policies dedicated to improving the lives of cancer survivors. Much of this movement has been driven by survivors who are engaged with their care. Today, many survivors do their research before visits, ask thought-provoking questions during appointments, and send messages through patient portals after their visits. They also join online communities for support.

On this website, Cancer.Net aims to support survivors as they transition to care after cancer. The site has a comprehensive section dedicated to survivorship to help address the challenges survivors might face, including strategies to address sexual health, advice on how to cope with the fear of recurrence, and a list of financial resources to help survivors address the costs of cancer care.

Cancer survivors should never suffer alone. For those impacted by a cancer diagnosis, support is available from numerous resources and organizations. Members of your survivorship care team, including oncology social workers, oncology nurses, physical therapists, and oncology pharmacists, can be invaluable resources. Primary care providers are also essential members of the health care team, particularly when a person transitions into survivorship.

Every day matters, and the ultimate goal is to live as long and as well as possible. If your personal cancer screenings and/or follow-up visits were delayed due to the COVID-19 pandemic, now is the time to schedule those appointments. This Cancer Survivors Month, remember that the most important part of cancer survivorship is taking care of yourself.

The author has no relevant relationships to disclose.

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