Sylvester Institute Launch Marks Giant Leap for Cancer Survivors
Summary
- Sylvester Survivorship and Supportive Care Institute is one of only a handful of dedicated cancer survivorship institutes nationwide.
- Cancer survivors face lifelong challenges after their primary treatment, including anxiety, depression, fatigue and chronic pain.
- The Survivorship Institute is a fully integrated, multidisciplinary and comprehensive approach of care that provides evidence-based care for survivors and opportunities for innovative research, from cancer care delivery to digital health and community-engaged programs.
Frank Penedo, Ph.D. ’99, a clinical health psychologist and survivorship researcher, was recruited back to the University of Miami in 2018 to take a leadership position with Sylvester Comprehensive Cancer Center, part of UHealth and the University of Miami Miller School of Medicine, with a clear mission: to elevate every cancer survivor’s quality of life.
Soon thereafter, while attending a Crucial Catch: Intercept Cancer Miami Dolphins football game, he found an instant ally in Carmen Calfa, M.D., a breast cancer medical oncologist and an associate professor in the Miller School’s Division of Medical Oncology. Dr. Calfa was also passionate about the importance of survivorship efforts in the lives of her patients.
“Ever since that first conversation, we have managed to become part of each other’s work life and created a bond to shape survivorship care at Sylvester,” said Dr. Penedo, associate director for population sciences and director of Cancer Survivorship and Supportive Care at Sylvester. “We talk every week about survivorship and supportive care: the challenges, the opportunities and all the work that needs to be done.”
Their efforts, and those of their colleagues, have brought South Florida’s sole NCI-designated cancer center to the national forefront of survivorship and supportive care research and care delivery. Today, their efforts, expertise and leadership were recognized, and brought to another level, with the official launch of the Sylvester Survivorship and Supportive Care Institute (SSCI), one of only a handful of dedicated survivorship institutes nationwide.
“The Survivorship Institute sets Sylvester apart from other cancer centers in that it brings a fully integrated, multidisciplinary and comprehensive approach of care that is holistic, wellness-focused and patient-focused,” said Dr. Penedo. “It not only provides clear evidence-based care for survivors but also provides opportunities for innovative research from cancer care delivery to digital health and community-engaged programs.”
“We have a commitment to our cancer survivors from the day they’re diagnosed through the continuum of their lives that we will be guiding them through their journey and be there for them every step of the way,” said Dr. Calfa.
Dr. Calfa says cancer and cancer treatment affect not only the individual but the entire family. The aftermath is complex and constantly evolving, physically, emotionally and spiritually.
“Our SSCI will lead the way in how cancer survivorship is approached at every level,” she said. “From generating new scientific evidence by performing high-level clinical research to training the next generation of health care providers, our intentional mission will make an everlasting impact in the field of cancer survivorship nationwide and worldwide.”
“With Frank Penedo as director and Carmen Calfa as co-director and medical director, the SSCI is a national beacon for survivorship care and innovation,” said Stephen D. Nimer, M.D., director of Sylvester, professor of medicine, biochemistry and molecular biology and executive dean for research at the Miller School. Dr. Nimer has prioritized and supported survivorship efforts at Sylvester, for their immediate and long term impact on patients across South Florida and shared their vision for a survivorship institute. Alongside Drs. Penedo and Calfa, Jessica MacIntyre, D.N.P., M.B.A., APRN, will lead clinical operations for the institute.
“The Survivorship and Supportive Care Institute shines a spotlight on the depth of support and expertise Sylvester offers,” said MacIntyre. “It’s dedicated to ensuring every survivor knows what resources are available and to continuously finding the best ways to help them thrive, no matter where they receive their care. Our mission is to stand with survivors every step of the way, guiding them toward a future of health, resilience and possibility.”
Cancer Survivorship is on the Rise
Thanks to improvements in screening and treatment, more and more people with cancer are surviving the disease. Today, there are 18.6 million Americans with a history of cancer, and that number is expected to exceed 26 million by 2040.
These survivors, including thousands in Florida, face lifelong physical, emotional, social and care delivery challenges after their primary treatment. More than half experience symptoms of psychological distress like anxiety and depression, and nearly half encounter continued fatigue even years after treatment. Chronic pain and cognitive impairment are all too common, as well.
The need for ongoing, comprehensive care is unmet mainly because of a lack of centralized, patient-centered and holistic care that focuses on the many challenges faced by survivors. Navigating multiple providers, specialists and health systems results in inconsistent management of cancer’s lingering effects. Procedures to address the complexity of care coordination, assessment and deliver targeted care in health care systems are lacking.
The net result: diminished quality of life.
“Cancer is complex, with many different services involved,” Dr. Penedo said. “Unifying all our resources under one roof helps us have oversight in terms of best survivorship care practices for patients, stratify our level of care to ensure services reach the right patient at the right time and provide ample opportunities for translational research and innovation.”
Cohesive Clinical Care
Anchored in Sylvester’s commitment to personalized, comprehensive, evidence-based survivorship care and support, the institute is structured around three tightly linked pillars: research and outreach, care delivery, education and training. This model turns inconsistent post-treatment care into seamless delivery of in-person and virtual offerings in South Florida and beyond.
Every year, more than 30% of Sylvester patients take advantage of individual and group-based resources ranging from exercise and dietitians to music, art and massage therapies. Psycho-oncology and cancer psychiatry teams help patients address emotional well-being, while social services help with practical needs like care coordination, transportation, education and finances.
Survivorship Wellness Clinics offer assessments and referrals for palliative/pain management, rehabilitation, onco-fertility, primary care, lifestyle modification and recurrence surveillance. The clinics also provide patients with a roadmap, Survivorship Care Plans that summarize treatment, follow-up guidelines and personalized recommendations.
Cancer Survivorship Research Hub
In the aftermath of cancer treatment, the best care coordination and follow-up practices are far from clear-cut. When should patients return for survivorship services? How often should physical, emotional and social symptoms be assessed? How should they manage survivorship along with comorbid conditions and in their primary care settings?
As researchers at the institute work to answer these questions and more, traditional silos are dissolving in favor of cross-disciplinary, translational exploration. When discoveries are made, often by Sylvester’s own scientists and clinicians, they influence the types and methods of services offered. Researchers continue to refine care by including patient-reported outcomes and risk-stratified approaches.
Physically, I’ve really rebuilt my stamina, my flexibility and my overall strength. Emotionally, it has given me stability and resilience I didn’t think I really had. They helped me rediscover creativity, joy and purpose in life again.
Cancer survivor Mike Hellem
Examples are already in motion where institute researchers collaborate with faculty across the University and in the South Florida community. These include evaluating mindfulness-based music therapy for stem cell transplant recipients and implementing survivorship care processes in community primary care clinics.
“We are bringing together experts from across the institution and our community, not only for care delivery but for research opportunities, organized and led by the institute,” Dr. Penedo said. “Otherwise, this research and clinical care delivery opportunity would not be taking place.”
New Benchmarks for Cancer Survivorship
Sylvester’s leaders have set new national benchmarks for survivorship care and policy by helping develop the NCI survivorship standards and the Comprehensive Cancer Survivorship Act legislation at the national level. Now, as the institute positions Sylvester as a magnet for top talent and competitive funding, they plan to extend their reach into geriatric oncology, cardio-oncology and pediatric/adolescent survivorship.
With everyone working under one umbrella, breakthroughs move quickly from the lab to patients through clinical trials and frontline services, bridging the gap between research and practical care. Community outreach and professional education are similarly streamlined, powering educational programs like the annual survivorship symposium and the Primary Care Providers Cancer Survivorship Training Program.Grateful Patients
The survivorship programs have helped Donna Scott maintain a healthier lifestyle since her breast cancer diagnosis nearly six years ago. Between weekly strength training sessions with an exercise physiologist, twice-monthly music therapy, yoga and nutrition sessions, Scott lost 30 pounds and has kept it off. She recently added a health coach who is helping her improve her sleep.
When Scott’s mother received her own breast cancer diagnosis out of state last year, she asked those doctors about survivorship care.
“It was nothing like we have at Sylvester,” she said. “She could meet with a dietitian, and that was it. I was shocked. We are really blessed here. It is such a wonderful thing that is offered to us. Everyone cares and wants us to be healthy and prevent recurrence.”
Mike Hellem, who received treatment at Sylvester for esophageal cancer, has embraced a wide range of postoperative therapies. After eight chemotherapy treatments and surgery, Hellem delved into yoga, art, music therapy and acupuncture. He met with an exercise physiologist and a dietician. He attended cancer support group meetings.
“Each program added a unique aspect to my recovery,” he said. “Physically, I’ve really rebuilt my stamina, my flexibility and my overall strength. Emotionally, it has given me stability and resilience I didn’t think I really had. They helped me rediscover creativity, joy and purpose in life again. In short, they’ve really brought me back to feeling whole.”
“By uniting Dr. Penedo’s visionary research with Dr. Calfa’s hands-on clinical oncology expertise, we’re creating a model that addresses the physical, emotional and social hurdles cancer survivors face,” said Dr. Nimer, the Oscar de La Renta Endowed Chair in Cancer Research. “The launch of the Survivorship and Supportive Care Institute marks a transformative step in how we care for patients beyond their treatment. By integrating science, compassionate care and education, we are building a future where survivorship efforts will allow all our patients to live long lives, and live well.”
Tags: Cancer Support Services, cancer survivorship, Cancer Survivorship Program, Cancer Survivorship Symposium, Comprehensive Cancer Survivorship Act, Dr. Carmen Calfa, Dr. Frank Penedo, Dr. Stephen Nimer, Jessica MacIntyre, Sylvester Comprehensive Cancer Center, Sylvester Survivorship and Supportive Care Institute