Team

In this captivating presentation, Dr. Kevin Oeffinger from Duke Cancer Institute’s Center for Onco-Primary Care reflected on his 30-year career caring for Hodgkin Lymphoma survivors. Starting as a resident in Waco, Texas, he shared his journey, mentors, and inspirations. Dr. Oeffinger discussed the many patients he has treated, sharing both inspirational and tragic stories, and highlighting the complexities of Hodgkin’s survivorship.

Dr. Oeffinger emphasized critical lessons learned:

• There is a need for better education on late effects within the medical community.
• Many healthcare providers lack knowledge about Hodgkin survivors’ unique challenges.
• His nurse practitioners dedicate significant time (10 hours per patient) to reviewing medical records.
• He frequently encounters breast cancer as a late effect and often recommends bilateral mastectomies for prevention.
• High prevalence of colorectal polyps in long-term survivors, according to a Dutch study on the topic. Frequent screening is essential for those with a high number of polyps (12-15+) found during a colonoscopy.
• The high amount of uncertainty surrounding these conditions necessitates that providers be available to their patients. He recommends Cognitive Behavioural Therapy and meditation to help manage uncertainty.
• Several patients have had successful organ transplants (lung, kidney, heart), though success requires being in the right place at the right time.
• Survivors often deal with both resilience and PTSD, emphasizing the choice to dwell in the past or move forward.
• Peer support is vital for survivors.
• Current treatment outcomes show improvements, offering hope for the future.

This presentation offers a heartfelt look into the experiences and insights gained from decades of dedicated care, making it a must-watch for those interested in the ongoing challenges and triumphs in Hodgkin Lymphoma survivorship.

Access Dr. Oeffinger’s presentation, Reflections on 30 Years of Providing Care for Hodgkin Survivors

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Dr. Kevin Oeffinger is a family physician, the founding Director of the Duke Cancer Institute (DCI) Center for Onco-Primary Care, the Director of the DCI Cancer Supportive Care and Survivorship Center, and Professor of Medicine with Tenure in the Division of Medical Oncology in the Department of Medicine. The four-fold mission of the Center for Onco-Primary Care are to: (1) deliver evidence-based, patient-centered health care across the cancer continuum by enhancing the interface between cancer specialists and primary care clinicians; (2) conduct innovative research with cutting-edge technology that can be translated to the community setting; (3) train and educate clinicians and researchers to extend this mission; and (4) generate policy leading to practice redesign.
Dr. Oeffinger has served as a clinician caring for Hodgkin lymphoma survivors for over 30 years. He has also led several studies supported by the National Cancer Institute aimed at improving the long-term health of Hodgkin lymphoma survivors.

Dr. Michael Stubblefield from ReVital Cancer Rehabilitation at Select Medical presented on the essential role of cancer rehabilitation in restoring function and quality of life for Hodgkin Lymphoma survivors. He explained that cancer rehab addresses impairments caused by treatments at all stages, from diagnosis to end-of-life. Pain is a common issue, which can be neuromuscular, musculoskeletal, or nerve-related. Understanding each patient’s treatment specifics is crucial. Radiation Fibrosis (RF) is defined as the hardening of tissue in the radiation field, while Radiation Fibrosis Syndrome (RFS) refers to the clinical manifestations of this condition, which can affect various tissues, including nerves, muscles, and blood vessels. These issues tend to worsen over time and require a comprehensive approach for effective management. Dr. Stubblefield highlighted that despite 60-90% of survivors needing rehabilitation, only 5% receive it. The multidisciplinary approach covers various health aspects such as cardiac, pulmonary, and endocrine. He also discussed barriers to care such as lack of awareness, access issues, and adherence challenges. The ReVital program addresses these needs effectively, providing specialized care for cancer survivors. Don’t miss this insightful presentation on enhancing survivor care.

Access Dr. Stubblefield’s presentation, Living Well Beyond Cancer – The Role of Comprehensive Cancer Rehabilitation in Restoring Function and Quality of Life to Hodgkin Lymphoma Survivors

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Dr. Michael D. Stubblefield is the Medical Director for Cancer Rehabilitation at Kessler Institute for Rehabilitation, National Medical Director for Select Medical’s ReVital Cancer Rehabilitation Program and National Medical Director for Complex Medical Rehabilitation for Select Medical’s Inpatient Rehabilitation Hospital Division. He is the former Chief of Cancer Rehabilitation at Memorial Sloan-Kettering Cancer Center. He is a Clinical Professor in the Department of Physical Medicine and Rehabilitation at the Rutgers New Jersey Medical School. He is board certified in Physical Medicine and Rehabilitation (PM&R), Internal Medicine, and Electrodiagnostic Medicine. His primary clinical expertise is in the identification, evaluation, and rehabilitation of neuromuscular, musculoskeletal, pain, and functional disorders resulting from cancer and its treatment, particularly those caused by radiation and neurotoxic chemotherapy.

Dr. Stubblefield is an accomplished researcher who has published extensively, not only in the rehabilitation literature, but in oncology, pain management, palliative care, neurophysiology, and other journals. He has authored numerous review articles and book chapters in the field of cancer rehabilitation and is the editor of Cancer Rehabilitation: Principles and Practice, the only comprehensive textbook in this emerging field now in its second edition. Dr. Stubblefield is a fierce advocate for the development of cancer rehabilitation and survivorship programs and champions their role in restoring function and quality of life to cancer patients.

Dr. Tonorezos from the National Cancer Institute discussed cancer survivorship, defining it from diagnosis through the balance of life. She discussed the growing prevalence of cancer in the U.S. and the stages of survivorship: early, advanced, and end-stage. Dr. Tonorezos highlights the Office of Cancer Survivorship, formed by survivor advocates, focusing on enhancing survivors’ health and well-being. The office supports research, collaborates with advocacy groups like NCCS, and conducts survivorship studies. Their goal is to fund researchers to address the multifaceted challenges of survivorship, involving various disciplines. More information is available here.

Access Dr. Tonorezos’s presentation, The State of Cancer Survivorship

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Emily S. Tonorezos, MD, MPH, serves as director of the Office of Cancer Survivorship, part of the Division of Cancer Control and Population Sciences at the National Cancer Institute (NCI). In this position, Dr. Tonorezos leads NCI’s efforts to address the challenges facing cancer survivors and their families – to prevent or mitigate adverse effects and to improve the health and well-being of cancer survivors from the time of diagnosis through the remainder of their lives.

Dr. Tonorezos came to NCI from Memorial Sloan Kettering Cancer Center and the Weill Cornell Medical College, both in New York, NY, where she served as director of the Adult Long-Term Follow-Up Program for survivors of childhood and young adult cancers. Her research, which has been funded by the National Cancer Institute, the American Cancer Society, the American Institute of Cancer Research, and others, focuses on cardiometabolic consequences of cancer therapy, childhood and young adult cancer survivorship, diet and nutrition, and care coordination for this population. She serves as Obesity and Diabetes Mellitus Silo leader for the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines and as co-leader of the International Guideline Harmonization Group for the metabolic syndrome. She also has served on the National Academy of Sciences, Engineering and Medicine Committee on Childhood Cancer and Disability and on the Cancer Survivorship Committee, the Adolescent and Young Adult Task Force, and the Clinical Guideline Committee for the American Society of Clinical Oncology (ASCO). In addition, Dr. Tonorezos led a recent international effort to develop recommendations for adult survivors of heritable retinoblastoma.

Dr. Tonorezos earned her medical degree from the University of Rochester School of Medicine and a Master of Public Health from the Johns Hopkins Bloomberg School of Public Health. She completed internal medicine residency and chief residency at Columbia University Medical Center, as well as a general internal medicine fellowship at the Johns Hopkins Hospital.

Erin has been a cancer survivor for more than 50 years. Diagnosed with Stage IV Hodgkin’s in 1972 at the age of 15, Erin underwent surgery, radiation, and MOPP chemotherapy. She had two recurrences of the disease and has had multiple late effects over the years. Erin holds a Master’s in Social Work (MSW) and is a Licensed Clinical Social worker (LCSW). She worked for many years as a volunteer and instructor with the Lovelane Special Needs Horseback Riding Program in Lincoln, MA. She lives with her family on Martha’s Vineyard island in Massachusetts.

Karla was diagnosed with HL as a teenager in 1976 and treated with surgery and mantle radiation. She has experienced a variety of late effects and explored allopathic solutions and complementary therapies in order to live a healthy life. Karla is an educator with a lifelong career in New York State public schools. She has been involved with HL survivorship advocacy and support since 2013. She lives in New York State’s Capital District.

While studying law in 1983, Sandi was diagnosed with HL. After a lymphangiogram and a staging laparotomy, she was treated with radiation and went on to finish her education and start a career. Twenty-five years later she began her ongoing struggle with a series of late effects. Sandi continues to practice law since 1985, in the Commonwealth of Pennsylvania.

Sophia was diagnosed with HL as a teenager in 1975 and treated with MOPP/ABVD and radiation at Memorial Sloan-Kettering Hospital. She has experienced a variety of late effects including breast cancer diagnosis in 1996. Following this second cancer diagnosis, Sophia left a successful career in information technology at IBM to pursue her MSW and PhD in social work at the University of North Carolina at Chapel Hill.  She is an Associate Professor at the Duke School of Nursing where she teaches and conducts research that blends her love for technology with a passion for helping others.

Diagnosed with Hodgkin lymphoma at age 16 in 1988, she was treated with mantle radiation; two years later, stage 3B, with a splenectomy, LOPP/EVAP chemotherapy. She has experienced a number of long-term effects, including breast cancer and heart and lung issues. Katherine currently lives in the UK working as a Counsellor & Assistant Manager for a Young People’s Counselling Service and administrates a Facebook support group for the Late Effects of Hodgkin Lymphoma treatment. She was also on Macmillan’s Patient reference group for “The Consequences of Treatment/VMDT project.”

Tess was diagnosed with stage 1A HL in 1982 at the age of 18, early in her medical training. She was treated with splenectomy and mantle field radiotherapy. She lives and works as a general practitioner in Oxfordshire, England, and has a special interest in end of life care. Because of her personal insights into late effects, she feels passionate about education and provision of information to healthcare professionals and patients alike.

Cathy was diagnosed with Hodgkin lymphoma in 1989 at the age of 29. She was treated with mantle radiotherapy but suffered a recurrence in 1993 when her first daughter was born. ABVD chemo followed, as well as the birth of her second daughter. In 2007, Cathy was diagnosed with an invasive breast cancer. She has had a number of additional late effects from her earlier cancer treatment. Cathy has had a career in Aerospace Materials Management and in working for orthopedic surgeons. She is now enjoying a “retirement job” doing merchandising for a specialty deli. Cathy has volunteered for many cancer organizations since her diagnosis. She lives in north east Pennsylvania.