Many long-term survivors were diagnosed before genetic testing was commonly offered, but that does not mean it is too late to benefit from it. This article highlights a study showing that some survivors may still carry inherited variants that could affect their future screening, follow-up care, and even family members’ health decisions. It is an encouraging reminder that new information can still make a meaningful difference, even years after treatment.
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News stories
Older Childhood Cancer Survivors Still Face Serious Long-Term Risks
For many long-term survivors, late effects are not new, but it is encouraging to see the medical literature continuing to validate just how serious and long-lasting they can be. This important article reports that survivors of childhood cancer age 50 and older still face higher risks of second cancers, serious chronic health problems, frailty, and premature death, especially those who were treated with radiation. It is a powerful reminder that these health issues are real, treatment-related, and deserving of lifelong follow-up and screening.
Clinical Trial Update: The COMMENCE Study 10-Year Durability Results Released at AATS
For many survivors who need a valve replacement, one of the biggest questions is how long the new valve will last. This recent HeartValveSurgery.com update shares encouraging 10-year results from the COMMENCE trial, suggesting strong durability for the INSPIRIS RESILIA tissue valve and low rates of repeat surgery. It is hopeful news for survivors looking for reassurance about long-term outcomes.
Spotlight on the BETER Clinic: Leading the Way in Survivorship Care
By Sophia Smith, PhD, Chair of Hodgkin’s International
During my sabbatical at the Netherlands Cancer Institute (NKI), I have been working closely with investigators affiliated with the BETER program, one of the world’s most comprehensive survivorship initiatives for people treated for Hodgkin lymphoma (HL). BETER (short for Better care after HL) was established to systematically identify, prevent, and manage the long-term and late adverse effects of HL treatment using a risk-based, personalized follow-up approach. Embedded within BETER is the INSIGHT study, a large-scale survivorship cohort that is generating rich data on late effects and patient-reported outcomes.
My role as a visiting scholar at NKI has focused on analyzing INSIGHT data. To date, I have drafted a first manuscript reporting survivors’ knowledge of late adverse effects, and I have begun work on a second manuscript examining how worry about late adverse effects can impact quality of life among HL survivors. This work is closely aligned with the foundational research led by Dr. Flora van Leeuwen, one of the foundational scientific leaders of the BETER program and an internationally respected survivorship researcher, as well as her long-time collaboration with Dr. Kevin Oeffinger, a global leader in cancer survivorship and a valued colleague of mine. Dr. Oeffinger helped facilitate my sabbatical at NKI, making this cross-national collaboration possible. Together, this work highlights how data embedded within clinical survivorship programs like BETER can directly inform research, advocacy, and improved long-term care for survivors, a priority that strongly resonates with Hodgkin International’s mission.
Learn more about the BETER program at: https://www.beternahodgkin.nl/
The Unbreakable Spirit
It can be so validating to hear another survivor’s story. In Coping Magazine, Nicole shares her experience with two cancer diagnoses, fertility struggles, treatment, and what she has learned from cancer.
Understanding Hodgkin lymphoma cell origins could yield better diagnostics
New research out of Weill Cornell Medicine reveals an updated understanding of how Hodgkin lymphoma cells originate and evade immune detection. These findings could result in new diagnostic markers that will help differentiate between Hodgkin lymphoma and other cancers with similar symptoms.
Life after cancer treatment is different. So are the health needs.
As more people live many years beyond cancer, it is becoming increasingly clear that survivorship does not end when treatment does. A recent article in Knowable Magazine explores the growing need for better care after cancer, especially for survivors still dealing with lasting effects years later. These can include heart problems, cognitive changes, infertility, second cancers, and emotional challenges. The article is a helpful reminder that survivorship care should be about more than remission. It should also support long-term health, quality of life, and the unique needs survivors carry with them long after treatment ends.
Radiation Fibrosis Syndrome: What It Is and How to Treat It
Radiation therapy, like surgery and chemotherapy, is a mainstay of cancer treatment. The reason radiation is used to treat cancer is that it is usually toxic to the fast growing cancer cells while supposedly having little adverse effects on the slow growing and relatively radiation resistant normal body cells. Unfortunately, normal cells are often affected by radiation in a variety of ways, especially over time.
Pelvic Radiation Disease Resources
Cardiovascular Risk Calculator
This risk assessment tool predicts risk of heart failure, ischemic heart disease, and stroke by age 50 among survivors of childhood cancer. It uses information from the CCSS papers, “Individual prediction of heart failure among childhood cancer survivors” and “Prediction of ischemic heart disease and stroke among childhood cancer survivors”, which created clinically useful models with readily available demographic and cancer treatment information.