According to the NIH National Cancer Institute, a person is considered a cancer survivor from the time of diagnosis through the balance of life. This means survivorship includes both those living with cancer and those free of it, each with unique needs. At the University of Cincinnati Cancer Center, our experts understand that survivorship involves much more than just treatment.

The Cancer Center’s Survivorship and Supportive Services Program brings together a multidisciplinary team to connect survivors with the resources they need to thrive at every step of their journey. The program is led by Elizabeth Shaughnessy, MD and Alique Topalian, PhD, MPH – both of whom are cancer survivors themselves – who are dedicated to developing innovative, rewarding and beneficial treatments for all survivors.

Alique Topalian, PhD, MPH  Research Scientist, Division of Survivorship & Supportive Services Department of Family & Community Medicine University of Cincinnati College of Medicine

Elizabeth Shaughnessy, MD Administrative Director, Cancer Survivorship Member, Cancer Risk Factors, Prevention and Surveillance Research Program University of Cincinnati Cancer Center Adjunct Professor of Surgery (Part-Time) Vice Chair for the Patient Experience University of Cincinnati College of Medicine

Mere decades ago, the prognosis for those diagnosed with cancer was not nearly as favorable as it is today. As stated by the American Cancer Society, only about half of those diagnosed with cancer survived at five years. Presently, however, more than two-thirds survive that long and there are over 14 million cancer survivors in the United States alone.

“Cancer survivorship and supportive services, as an overall discipline, is finally gaining the traction it needs in the cancer community,” said Dr. Topalian as she shared a brief history of cancer survivorship. “When you look at the timeline, it is incredible how much survivors, advocates, and clinicians have grown in response to this need over the last 40 years.”

In 1985, Fitzhugh Mullan, MD wrote the inaugural article “Seasons of Survival: Reflections of a Physician with Cancer,” which focused on the importance of investigating and addressing problems many patients face after cancer treatment. This led to the formation of the National Coalition of Cancer Survivorship in 1986 and the creation of the Office of Cancer Survivorship at the National Cancer Institute in 1995. These developments paved the way for initiatives like the St. Jude Lifetime Cohort Study for Pediatric Cancer Survivors, which aims to reduce the late effects of childhood cancer treatment.

“From this study, we have learned that many side effects of cancer treatment show up 20 to 25 years after treatment, which further highlights the need for survivorship and supportive services,” Dr. Topalian explained.

Dr. Shaughnessy added, “Until approximately five years ago, most cancer survivorship research focused on true survivorship and musculoskeletal issues. However, over the evolution of this field, other important issues have come to the forefront of cancer survivorship research and care, specifically cancer-related cognitive impairment (CRCI), cancer and cancer treatment experienced as a trauma leading to various levels of post-traumatic stress disorder, sexual dysfunction due to various treatments, exercise and its importance in sustaining the patients, and the emergence of oncology primary care.”

The University of Cincinnati Cancer Center opened the region’s first and only primary care clinic dedicated to patients with cancer. The majority of those living with cancer have multiple chronic conditions, such as high blood pressure and diabetes. When a patient is going through cancer treatment, these conditions are sometimes overlooked and left untreated during that time, which leads to poorer outcomes and a decreased quality of life. The emergence of oncology primary care and the creation of this clinic allow patients to receive primary care services from a physician experienced in cancer survivorship care.

However, while immense progress has been made regarding the prioritization of survivorship, there is still room for improvement. Drs. Topalian and Shaughnessy anticipate more changes to ensure the best outcomes and quality of life for cancer survivors.

“While it is growing in importance, many patients are still not offered supportive services during treatment or survivorship visits once achieving remission or completing active treatment,” Dr. Topalian shared. “Survivorship care plans are often not used in practice, or if they are, they often are not given to the appropriate provider, such as their primary care physician. I imagine survivorship and supportive services being available to all patients from the date of diagnosis. Patients should be wrapped in care that can improve their physical health, long-term outcomes, symptom management and quality of life.”

“Treating cancer and drug development is incredibly important, but many patients are left with very poor quality of life after treatment,” said Dr. Topalian. “This is what I want to change in the future. I imagine large-scale studies including interventions to improve quality of life and researchers having the ability to build, implement and disseminate evidence-based programming.”

With an overall mission to enhance the quality of life and level of wellness of cancer survivors through the provision of patient-centered research, education and comprehensive equitable clinical care, the goals of the Cancer Center’s Survivorship and Supportive Services Program are continuously adapting based on patient needs and funding.

“Currently, the team is heavily focused on guiding individuals through lifestyle changes and education related to their cancer experiences,” Dr. Shaughnessy shared. “For instance, cancer causes fatigue, which can be mitigated by exercise, beneficial for both fatigue management and reducing cardiac risks, which is critical as many cancer patients die of cardiac issues. Additionally, exercise releases myokines, which improve brain function and help combat CRCI. Adequate sleep is crucial for healing and maintaining cellular health, and sleep studies can optimize sleep disrupted by treatment. Some chemotherapy types can cause nerve damage, leading to pain and sensory loss, particularly in the hands and feet, which is often worse at night.”

Additionally, Dr. Topalian’s overall research focus is how to improve the quality of life for survivors, which encompasses the more specific research themes of the Survivorship and Supportive Services Program, such as oncology primary care, cancer-related cognitive impairment, adolescent and young adult (AYA) survivorship, sexual health in cancer survivors and improving health equity/disparities.

“Most of my work utilizes community engagement approaches and the implementation and dissemination of evidence-based interventions and programming,” Dr. Topalian explained. “There are so many great resources available, but the most important part is how to get these to as many patients as possible. Of course, it will happen through the traditional method of publishing in a medical journal, but we also need the frameworks and ability to share our findings in a clear, concise way to be implemented in other settings.”

As cancer survivors, Drs. Shaughnessy and Topalian know firsthand how cancer and its treatment can impact a person’s life, and both graciously offered some insight into their personal experiences.

“During my training in surgical oncology at the City of Hope, the field of cancer survivorship was a part, but it just hadn’t been named that yet,” shared Dr. Shaughnessy. “I strongly felt that we needed to help the patient get beyond the impact of their cancer and help them live as full a life as possible. I developed breast cancer five years ago, and the impact was profound. If there was a rare side effect or obscure problem that could occur, I got it. In working with our Survivorship Program, I was able to get back on track.”

“However, the neuropathy in my hands and feet, with weakened grip, no longer allowed me to operate as a surgeon in any efficient fashion,” Dr. Shaughnessy continued. “I stepped down from clinical practice two years ago as it progressed, and the position of administrative director of the Survivorship Program opened at that time. Several people approached me about taking it on, and I felt that it really fit my perspective and personal experience, so I decided to accept the position.”

“I was diagnosed with acute myeloid leukemia (AML) at the age of 4, and this inspired me to go into health care research,” Dr. Topalian shared. “Through my MPH and PhD, I was focusing on mental health and protective factors at the community level. However, shortly after completing my PhD in 2021, my AML relapsed, making me the first ever person to relapse after 22 years. While I was in treatment for a year, I took advantage of every type of supportive service available to me knowing that when I made it through this, this was what I wanted to spend my life researching.”

“I built national connections to help make this dream a reality,” Dr. Topalian said. “I presented at my first cancer conference in 2022, and I became involved in local and national advocacy. I truly believe these helped me make it through my active treatment as well as I did. However, I was treated on the pediatric side, and I learned that adults do not have access to many of these incredible services. Stories of other survivors suffering without ever hearing about these types of services broke my heart. I realized this is what I needed to change, and I have been using my research, personal experience and advocacy to help achieve this goal.”

The University of Cincinnati Cancer Center remains committed to advancing survivorship care through ongoing research, education and clinical services. By addressing the unique needs of cancer survivors and continually adapting our programs, we aim to improve the quality of life for all survivors. Together, we can ensure that every cancer survivor has access to the comprehensive care and support they need from diagnosis through the rest of their lives.