For many people living with follicular lymphoma (FL), the hardest part of the journey isn’t always treatment. It’s hearing the words: “You have follicular lymphoma.”
In FLF’s 2025 Annual Global Survey, almost half of respondents (49.9%) said getting diagnosed was the single hardest moment of their FL journey. Meanwhile, 45.6% said their biggest ongoing challenge was their emotional and mental wellbeing.
To mark Blood Cancer Awareness Month, the Follicular Lymphoma Foundation (FLF) has launched a new hub of resources designed specifically to support people at diagnosis.
Developed with people living with FL, the new resources aim to answer common questions, provide reassurance and help people better understand what comes next.
A diagnosis of follicular lymphoma often comes with far more questions than answers.
Many people find it difficult to make sense of a diagnosis that doesn’t fit what they thought they knew about cancer. Because follicular lymphoma is often slow-growing, it is commonly diagnosed at Stage 3 or 4. While those numbers can sound frightening, stage means something very different in FL than it does in many faster-growing cancers.
For others, the biggest challenge is understanding Watch and Wait (also known as Active Monitoring) – being told you have cancer, but that treatment is not needed straight away.
Alongside this comes the uncertainty of living with FL. Questions about what the future might hold, whether treatment will be needed and if or when the lymphoma could return can create a significant emotional burden.
At a time when people are searching for answers, reassurance and hope, having access to trusted information can make all the difference.
People living with follicular lymphoma stated they wanted clearer, more accessible information at diagnosis to help navigate the early weeks and months after diagnosis.
In response, the FLF has worked closely with patients to develop a dedicated newly diagnosed hub on its website.
The resources have been designed for people who are newly diagnosed with follicular lymphoma, providing clear, accessible information that reflects both clinical expertise and lived experience.
Alongside the new website section, FLF has also launched a new video for people who have recently been diagnosed, created with input from people living with FL and designed to help them better understand their diagnosis and feel less alone.
Together, these resources cover key topics including understanding follicular lymphoma, making sense of “watch and wait”, managing uncertainty, looking after emotional wellbeing and finding support.
The launch of these new diagnosis resources demonstrates the importance of listening to patient experiences and responding to what people tell us they need.
Later this month, FLF will launch its next Annual Global Survey, giving people living with follicular lymphoma another opportunity to share their experiences, priorities and challenges.
The survey plays a vital role in shaping the Foundation’s work, helping to guide future patient support programmes, educational resources and research priorities. By taking part, you’ll help us better understand what matters most to the FL community and where support is needed next.
Dr Mitchell Smith’s full mid-year report explores the trial data, biomarker research and scientific meetings in more depth. It sits alongside his earlier reviews for those interested in further detail.
Each year we conduct an global survey to better understand the challenges, concerns and priorities of people living with follicular lymphoma. Discover what we learnt from this in 2025.
Nobody should face follicular lymphoma without answers, hope or support. Your donation could help us continue to improve patient resources and fund research that accelerates progress towards cure.
