For many people living with follicular lymphoma (FL), the journey is often long and marked by periods of stability, active treatment, and watchful waiting. But sometimes, FL can behave differently, either growing more rapidly or changing into a more aggressive type of lymphoma. This is where the terms progression and transformation come in. They sound similar but mean very different things.
Understanding the difference can help you feel more in control, ask the right questions at appointments, and better navigate what may come next. As Dr Carla Casulo described in one of our previous webinars:
“You should trust yourself – trust if something doesn’t feel right about your health.”
– Dr Carla Casulo, MD, Associate Professor of Medicine, and Assistant Director of Cancer Research Training and Education at the Wilmot Cancer Institute – Rocheste
Listen to the full webinar recording on “When FL changes: Understanding progression and transformation” by following the link here.
What Is Progression?
Progression means the disease is growing or spreading in the body. In FL, this can happen gradually over time, often after a period of remission or stable disease. Signs of progression may include:
Importantly, progression doesn’t mean the disease has turned into something more aggressive. It still behaves like FL, if it is progressing slowly and not causing problems observation may still be a good choice, and there are a range of treatment options that can manage it effectively if needed. Many people go through more than one period of progression and respond well to additional treatment.
What Is Transformation?
Transformation refers to when FL changes into a more aggressive type of lymphoma, most commonly diffuse large B-cell lymphoma (DLBCL). This doesn’t happen to everyone. It’s estimated that around 2–3% of FL cases transform each year.
Some warning signs of transformation include:
If your doctor suspects transformation, they may recommend a biopsy of the new or growing area, along with scans or blood tests. Confirming transformation is important because it often calls for a different and more immediate treatment plan.
Why It Matters
Both progression and transformation require medical attention, but the urgency and treatment plans can differ.
Although transformation can sound serious, it’s important to know that it can be treated successfully, especially when identified early. People who experience transformation often go on to receive effective treatment and regain quality of life.
What You Can Do
If you’re living with FL, here are a few steps to stay informed and proactive:
You’re Not Alone
Support, knowledge, and timely treatment can make all the difference. At the Follicular Lymphoma Foundation, we’re here to help you feel informed, supported, and less alone. You can watch the full webinar When FL Changes: Understanding Progression & Transformation to hear from clinical experts and patient voices who’ve been there too.
You can watch all of our previous webinars through this link, and we warmly welcome your feedback via our Connect With Us page. To hear about upcoming webinars, sign up to our webinar updates or follow us on social media.
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