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What is Follicular Lymphoma?

Follicular lymphoma is a type of incurable blood cancer that affects the lymph nodes (or glands). It is the second most common type of non-Hodgkin lymphoma and the most common type of slow-growing lymphoma.

Follicular lymphoma is a type of blood cancer characterized by the abnormal growth of white blood cells within the lymph nodes, leading to the formation of clumps called follicles. These follicles can be found in lymph nodes throughout the body, but often do not cause symptoms until they reach an advanced stage.

The good news is that, unlike other cancers, follicular lymphoma is considered indolent, meaning it tends to progress slowly. This unique behavior allows patients to go through periods of active disease, experiencing symptoms that may necessitate treatment, followed by periods during which no immediate action is required.

For this reason, many doctors describe FL as highly treatable, but difficult (if not impossible) to cure. But at the Follicular Lymphoma Foundation, we believe that with dedicated fundraising, research and development, a cure is just around the corner.

Globally, FL affects over a million people, making it a significant health concern. In the UK, approximately 2,000 new cases of FL are diagnosed each year, while in the US, the number is higher at around 16,500 new cases annually.

What are the Symptoms of Follicular Lymphoma?

As one of the most common slow-growing lymphomas, FL belongs to the broader category of non-Hodgkin lymphoma (NHL), with Hodgkin lymphoma being the other main type.

FL is often characterized by its slow development, and as a result, some patients may not experience any symptoms for an extended period. However, for those who do, the most common indicator is the discovery of one or multiple lumps beneath the skin. These lumps typically form in the neck, groin, or armpit and are frequently noticed accidentally, e.g. via a CT scan performed for another reason. Other symptoms that can occur include weight loss, fevers, and drenching night sweats.

It is important to remain vigilant about any unusual changes in your body and promptly consult a healthcare professional if you notice any concerning symptoms.

FL is a chronic condition that affects the lymphatic system, a crucial component of the immune system responsible for filtering and fighting infections. However, due to the abnormal growth of white blood cells, individuals with this type of cancer may experience a compromised immune system, making them more susceptible to infections.

Read more about the different symptoms and diagnosis of FL here.

How is Follicular Lymphoma Treated?

Treating FL requires a personalized approach, recognizing that each patient’s journey is unique. Your healthcare team should thoroughly assess various factors, including the stage and grade of your lymphoma, age, overall health, and individual diagnosis, to determine the most suitable treatment plan for you.

1. “Watch and wait” (active monitoring)

As mentioned above, in some cases a strategy called “watch and wait” or “active monitoring” may be initially recommended. This approach may initially cause concern due to the lack of immediate action, but it is designed to carefully observe the disease without treatment when it’s not actively progressing or causing symptoms. It’s essential to understand that even during watch and wait periods, you will be living with FL, but active treatment might not be necessary at that moment.

2. Treatment options

If your healthcare team deems treatment necessary, they will discuss various options tailored to your specific needs. Commonly used treatments for FL are systemic therapies, which can be administered intravenously or in pill form. These may include chemotherapy, immunotherapy newer targeted agents. Radiotherapy or surgery, alone or in combination with systemic therapy, are less frequently used for FL. The decision on which treatment to pursue will involve considering the potential side effects versus the benefits of treatment. Read more about various treatment options here.

3. Transformation

In a small percentage of cases (usually less than 15%), FL may undergo a change known as transformation, becoming more acute or aggressive. If this occurs, your medical team will reassess the treatment plan and explore appropriate strategies to address the transformed lymphoma. Read more about transformation here.

The good news is that outcomes of people with follicular lymphoma have improved significantly in recent decades. In fact, the 10-year survival rate for someone with follicular lymphoma has risen from 50% to 80%.

How is Follicular Lymphoma Different from Other Cancers?

Cancer is often associated with aggressive, rapidly progressing diseases that demand immediate treatment. However, FL displays distinct characteristics that set it apart from many other cancers.

Indolent nature – Unlike aggressive cancers, FL is considered indolent, meaning it tends to progress slowly. This unique behaviour allows patients to go through periods of active disease, experiencing symptoms that may necessitate treatment, followed by periods of remission, during which no immediate action is required. This approach is possible due to FL’s slower progression and helps avoid unnecessary interventions when the disease is not actively advancing.

Advanced stage diagnosis – One of the peculiarities of FL is that it is often diagnosed at an advanced stage, with the cancer detected at multiple sites within the body. The reason for this lies in the nature of FL, which affects cells of the immune system.

These immune cells use the blood to move around the body, making it challenging to detect the disease in its early stages. Despite typically being diagnosed later, FL tumors rarely carry the same severity as “solid” cancers, such as lung or breast cancer.

Understanding these distinctions can help patients and their healthcare teams make informed decisions about managing their FL effectively. Regular monitoring and careful evaluation during “watch and wait” periods are crucial for timely intervention and ensuring the best possible outcomes for those living with this unique type of cancer.

Your Support Hub

At the Follicular Lymphoma Foundation, we’re not prepared to settle for incurable. With dedicated fundraising, research, and development, we believe that a cure is just around the corner.

If you’ve been diagnosed with FL or know someone who has, then we recommend visiting “Your Support Hub” for more resources including access to patient stories, webinars and much more.

"When looking into my type of cancer, I realized how unknown it is to most people, however, in my search I found The Follicular Lymphoma Foundation that aims to find a cure. I know how important and rewarding it is to exchange experiences with people who are living in situations similar to ours, with the same doubts, fears, weaknesses and hopes, and how rewarding the mutual help of a group is."

Lilia Luzes

What is Follicular Lymphoma?

What is FL?

Signs & Symptoms

Treatment