Thank you for making our first-ever conference unforgettable!
On June 7-9, 2024, 133 Hodgkin’s Lymphoma survivors, supporters, and clinicians gathered in Boston for the first Hodgkin’s International Symposium on Long-Term Survivorship. This landmark event was the first of its kind, focusing specifically on the challenges Hodgkin’s Lymphoma survivors may face as a result of their treatment. For those who were not able to attend the event in person, we are happy to be able to share high quality video recordings of the morning presentations. You are welcome to explore this valuable content below. Please check back for complete access to the afternoon program presentations. Below is a complete list of the events and presentations that were offered at the symposium.
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Watch the presentations from the program. Morning and afternoon presentations are now available!
Schedule of Activities
Morning Program
Welcome and Introductions
Erin Cummings, MSW, LCSW and Tess Nowell, MD, Co-Chairs, Hodgkin’s International
The State of Cancer Survivorship (with a focus on the NCI portfolio of Hodgkin lymphoma research)
Keynote speaker, Dr. Emily Tonorezos, MD, MPH, National Cancer Institute
Still Here – Five Decades of Surviving Cancer
Erin Geddis Cummings, MSW, LCSW
Caring for Survivors of Hodgkin Lymphoma: It Really Does Take a Village
Dr. Larissa Nekhlyudov, MD, MPH, Brigham and Women’s Hospital/Dana-Farber Cancer Institute
The Adult Survivorship Program and Lymphoma Division at Dana-Farber Cancer Institute: An Evidence-Based Hodgkin Lymphoma Educational Resource
Kate E. Dibble, PhD, Instructor in Medicine within the Department of Medical Oncology, Breast Oncology at Dana-Farber Cancer Institute and Harvard Medical School
Panel #1 Envisioning What Survivorship Care Should Look Like
Sophia K. Smith, Moderator
Panel members: Emily Tonorezos, Larissa Nekhlyudov, Stan Barta, Susan Leigh, and Erin Cummings
Afternoon Program
Reflections on 30 Years of Providing Care for Hodgkin Survivors
Keynote speaker, Dr. Kevin Oeffinger, Duke Cancer Institute (DCI) Center for Onco-Primary Care
Living Well Beyond Cancer – The Role of Comprehensive Cancer Rehabilitation in Restoring Function and Quality of Life to Hodgkin Lymphoma Survivors
Dr. Michael Stubblefield, ReVital Cancer Rehabilitation at Select Medical
Advocating for Better Survivorship Care
Shelley Fuld Nasso, MPP, National Coalition for Cancer Survivorship
Panel #2 Planning the Pathway to Excellent Survivorship Care
Tess Nowell, Moderator
Panel members: Kevin Oeffinger, Michael Stubblefield, Shelley Nasso, Abdalla Sholi, and Anastasia Forrest
Closing Remarks with Erin Cummings and Tess Nowell
Hodgkin’s International Honor of Excellence Awards
- The 2024 Hodgkin’s International Honor of Excellence (Survivor/Advocate) awarded to Susan Leigh, BSN, RN-Retired: The Hodgkin’s International Honor of Excellence acknowledges a cancer survivor and/or advocate who has made remarkable contributions and has inspired positive change within the cancer survivor community.
- The 2024 Hodgkin’s International Honor of Excellence (Provider) awarded to Kevin Oeffinger: This honor celebrates individuals who have demonstrated exceptional dedication to improving the lives of cancer survivors and to advancing the science and practice of survivorship care.
Highlights from our 2024 symposium
Hodgkin’s International is honored to have several of the top clinicians and experts in the field of cancer survivorship join us for our conference.
Dr. Kate Dibble presented an evidence-based Hodgkin Lymphoma educational resource available to the public at Dana-Farber. Developed by their adult survivorship and lymphoma programs, this resource aims to enhance knowledge and awareness of late effects. Topics included secondary cancers and cardiac care, utilizing screening tools like cholesterol and blood pressure assessments, echocardiograms, and EKGs, with frequencies tailored to treatment history and current status. More details can be found here.
Kate E. Dibble is an Instructor (Faculty) of Medicine at Dana-Farber Cancer Institute & Harvard Medical School.
Shelley Fuld Nasso, MPP, from the National Coalition for Cancer Survivorship (NCCS), presented an engaging and informative session titled “Advocating for Better Survivorship Care.” This presentation is essential viewing for anyone interested in the future of cancer care and advocacy. NCCS, founded in 1986, is dedicated to advocating for quality cancer care for all individuals touched by cancer. One of their key initiatives is the annual Survivorship Survey, with results available on their website. Notably, the survey reveals that caregivers are often less satisfied with care compared to patients, and patient satisfaction increases when a care plan is in place. However, the burden of coordinated care frequently falls on patients, posing challenges, especially in the absence of a structured care plan.
Key findings from the survey include:
- 30% of post-treatment follow-up care is provided by primary care physicians (PCPs), 44% by oncologists, and 22% by other providers.
- Most follow-up care focuses on tests and scans, neglecting quality of life aspects.
NCCS offers robust advocacy programs, including:
- CPAT (Cancer Policy and Advocacy Team) for those interested in advocacy opportunities.
- Elevate Ambassadors, with applications opening in the fall on NCCS’s website.
Shelley highlighted critical legislative efforts supported by NCCS, such as the Comprehensive Cancer Survivorship Act, which promotes health improvements for survivors and advocates for payment models incentivizing better survivorship care. Additionally, the Cancer Care Planning and Communication Act seeks Medicare coverage for comprehensive care plans.
To get involved in advocacy, Shelley encourages viewers to engage with their members of Congress, sharing personal stories and issues to drive change.
NCCS provides a wealth of resources for cancer survivors on its website, including survivorship checklists. Don’t miss this insightful presentation to learn how you can advocate for better survivorship care and make a difference!
Access Shelley’s presentation, Advocating for Better Survivorship Care
Shelley Fuld Nasso, MPP, is CEO of the National Coalition for Cancer Survivorship, where she advocates to transform the cancer care system for everyone touched by cancer. NCCS engages in public policy efforts to improve cancer care and empowers cancer survivors and caregivers to be a voice in public policy debates. Prior to joining NCCS in 2013, she led public policy efforts at Susan G. Komen. She is a graduate of Rice University and the Harvard Kennedy School. She advocates in honor of her dear friend, Dr. Brent Whitworth, a beloved physician who died of cancer at the age of 43.
After receiving her degree in nursing from the University of Arizona in Tucson in 1969, Susan Leigh served as a Lieutenant in the U.S. Army Nurse Corps. Seven months after completing a tour of duty in the Mekong Delta in South Vietnam, she was diagnosed with Hodgkin lymphoma and treated with some of the earliest forms of chemotherapy and radiation. This experience influenced her decision to enter the newly founded field of oncology nursing and began this phase of her career working as a research nurse in the new Department of Hematology/Oncology at the University of Arizona Medical Center.
For the past 35 years, Susan has focused her efforts on national advocacy work with special emphasis on the long-term and late effects of cancer treatment. Her most cherished involvement has been with the National Coalition for Cancer Survivorship (NCCS) as a founding member and past president. She has also been actively involved with many professional organizations, including the Oncology Nursing Society and the National Cancer Institute.
Susan also worked as a Survivorship consultant and educator with Arizona Oncology, a multi-site community practice in Tucson, until multiple treatment-related cardiac complications made it difficult to fulfill work obligations and accelerated her decision to retire.
In addition to surviving Hodgkin lymphoma (1972), she has also been treated for breast cancer (1991), bladder cancer (1995), and, more recently, targeted radiation therapy for early-stage lung cancer (2016). Also, since 2013 she has been dealing with multiple cardiac issues that are considered fallout from her original cancer treatments. Meanwhile, she continues to promote awareness about the challenges of surviving cancer, and advocates for survivorship care planning and continual, systematic follow-up of long-term survivors.
This past October, Susan was the successful recipient of a new aortic valve through the TAVR procedure (transcatheter aortic valve replacement). This has been a life-saving medical procedure for long-term cancer survivors who are ineligible for open heart surgery.
Dr. Nekhlyudov’s presentation emphasized the comprehensive needs of cancer survivors, involving various specialists to address concerns like recurrences, new cancers, physical and psychosocial effects, health promotion, and chronic conditions. Cancer survivorship care is managed primarily by oncologists and primary care doctors but often includes cardiologists, gastroenterologists, pulmonologists, therapists, vocational trainers, and financial counselors.
Dr. Nekhlyudov highlighted the importance of regular dental, dermatology, gynecology, and primary care follow-up, as well as managing pre-existing conditions unrelated to cancer. She shared a powerful interview (beginning at 13:30) with one of her patients, Janice who shares her Hodgkins survivorship story to help educate medical students and professionals about late-effects and patient care.
Dr. Larissa Nekhlyudov is a Professor of Medicine at Harvard Medical School and is a practicing internist at the Brigham & Women’s Hospital in Boston, Massachusetts. She is Clinical Director, Internal Medicine for Cancer Survivors at the Dana-Farber Cancer Institute where she offers clinical care for long-term survivors of childhood and adult cancers. Dr. Nekhlyudov is particularly interested in improving the care of cancer survivors and the interplay between primary and oncology care. She has been at the forefront of the field of cancer survivorship, nationally and internationally, by leading and participating in the development of survivorship care policies and clinical guidelines, educational programs, and research. Throughout her career, Dr. Nekhlyudov has been committed to educating and empowering cancer survivors and their caregivers.
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
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.
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
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.
Hodgkin’s International is pleased to welcome the following panelists and Hodgkin lymphoma survivors. Each one is inspirational, and together they represent the widely diverse and unique experiences of many long-term survivors.
Stan Barta was diagnosed with Hodgkin Lymphoma at age 13, fifty years ago. Five years of surgery, Cobalt radiation, and MOPP chemotherapy lead him to complete remission, just in time for high school graduation.
This was followed by 30 years of good health, travel adventures, sailing, and boat-building. When Stan and his wife Cathi adopted two toddler boys from Thailand, they moved the whole family to their tug/trawler, where Stan became the “at home parent,” home-schooling his sons aboard ship. The family had numerous maritime escapades in the coastal waters of Washington and British Columbia.
Stan began to experience late effects about ten years ago. He credits Dr. Michael Stubblefiled’s vigilance with preventing him from having a fatal heart attack. Stan was diagnosed with “advanced radiation-induced coronoary artery disease” (CAD), heart failure with preserved ejection fraction (HFpEF), and cardiac cachexia.
Stan used to lament the things he can no longer do, due to fatigue and shortness of breath. With the help of a palliative care therapist, he has turned to exploring what he CAN be, and what his true values are.
Many will remember Stan’s wonderful talk on Dr. Thomas Hodgkin, presented via Zoom last year. If you missed it, you can watch it here via our Hodgkin’s International YouTube channel.
Anastasia was diagnosed with stage 2B Bulky HL at the age of 24 in 2009 and treated with ABVD. After a battle with Bleomycin Toxicity that left doctors divided on whether consolidative radiation should be used, Anastasia opted for Proton Therapy, enrolling in a research study and becoming the first patient to receive her treatment in all protons at the University of Florida Proton Therapy Institute.
Today, Anastasia works as a Real Estate Broker and is a self-published author. She is happily married with two daughters ages 7 and 10. She is passionate about Hodgkin’s advocacy, sobriety, and thanking God for every experience.
Anastasia has already made significant contributions to the survivorship world and to our organization in particular. She has been instrumental in creating our TikTok site and has populated it with educational and inspiring posts. As a younger survivor, Anastasia’s voice and experience is crucial in understanding the needs of ALL Hodgkin’s survivors.
After receiving her degree in nursing from the University of Arizona in Tucson in 1969, Susan Leigh served as a Lieutenant in the U.S. Army Nurse Corps. Seven months after completing a tour of duty in the Mekong Delta in South Vietnam, she was diagnosed with Hodgkin lymphoma and treated with some of the earliest forms of chemotherapy and radiation. This experience influenced her decision to enter the newly founded field of oncology nursing and began this phase of her career working as a research nurse in the new Department of Hematology/Oncology at the University of Arizona Medical Center.
For the past 35 years, Susan has focused her efforts on national advocacy work with special emphasis on the long-term and late effects of cancer treatment. Her most cherished involvement has been with the National Coalition for Cancer Survivorship (NCCS) as a founding member and past president. She has also been actively involved with many professional organizations, including the Oncology Nursing Society and the National Cancer Institute.
Susan also worked as a Survivorship consultant and educator with Arizona Oncology, a multi-site community practice in Tucson, until multiple treatment-related cardiac complications made it difficult to fulfill work obligations and accelerated her decision to retire.
Dr. Sholi is the regional director for UPMC Hillman cancer center in north-central Pennsylvania. He is a graduate of the University of Jordan medical school and did his residency in Internal medicine at a Temple University community program, the Scranton Temple Residency Program.
He completed his hematology and oncology fellowship at the Medical College of Wisconsin in Milwaukee, Wisconsin, in 2003. Dr. Sholi practiced hematology and oncology in private practice and in hospital-based practice and finally joined UPMC Hillman cancer center in 2019.
He is also a survivor of Hodgkin lymphoma.
Dr. Sholi was diagnosed in 1989 with stage IIB Hodgkin’s lymphoma and received chemotherapy and radiation treatment at the Royal Marsden cancer center in Surrey , England.
He looks forward to sharing his personal story, from diagnosis, through treatment and completing medical school as well as post graduate training and how it shaped his life as an Oncologist. He would like also to discuss long term complications of treatments of Hodgkin lymphoma and how to cope with that risk.
Thank You to Our 2024 Symposium Sponsors
The following organizations’ generous sponsorship has helped make this year’s conference a reality.
This event represents a long-awaited dream for us. After years of feeling isolated and adrift, the prospect of finally embracing one another is not only inspiring but miraculous.
