News Archive - Hodgkin's International

Spotlight on the BETER Clinic: Leading the Way in Survivorship Care

By Sophia Smith, PhD, Chair of Hodgkin’s International

Sophia with Dr. Flora van Leeuwen, a senior epidemiologist and key leader of the BETER program, and an international leader in Hodgkin lymphoma survivorship research, at the Netherlands Cancer Institute.

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.

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.

Results of the Long-Term Follow-Up Study

The Long-Term Follow-Up (LTFU) Study has resulted in more than 300 publications in scientific journals since it was launched in 1994. Some of these articles are summarized here.

Physical Activity Helps Alleviate Side Effects from Cancer Treatment

Cancer Today featured a strong review of the growing evidence that exercise can help ease fatigue, improve strength and physical function, and support mental health and quality of life during cancer treatment. For survivors who feel overwhelmed by fatigue or deconditioning, it is encouraging to see that even small amounts of movement can help.

Incidence rates of skin cancer

How to Keep Yourself Safe Without a Spleen

You might not think of your spleen that much, but it’s been looking out for you. If you don’t have one, there are some things to know to keep yourself safe from infections.