What is FL?

What is Follicular Lymphoma?

Follicular Lymphoma (FL) is a type of  blood cancer that affects the lymph nodes (or glands). It’s currently uncurable. We plan to change that. 

There are more than 100 different blood cancers, over 60 of which are types of Lymphoma. There are two main types of Lymphoma. These are Hodgkin Lymphoma and Non-Hodgkin Lymphoma.

Follicular Lymphoma is the second most common type of Non-Hodgkin Lymphoma. It develops when white blood cells develop abnormally, increasing in number and growing in clumps called follicles inside the lymph nodes. These appear as usually painless swellings in the lymph glands found in the neck, armpits and groin.

Lymph glands play an important role in the immune system, acting as a filter to help fight infection. This means that people with Follicular Lymphoma can have a compromised immune system.

Globally there are over a million people living with this currently incurable cancer. There are around 2,000 people diagnosed with Follicular Lymphoma every year in the UK and 16,500 diagnosed every year in the US.

What are symptoms of Follicular Lymphoma?

For most patients, Follicular Lymphoma (FL) is slow developing which means that it can take a long time for symptoms to appear. And some people don’t get any symptoms at all. The most common symptom of Follicular Lymphoma is discovering a lump, or several lumps, under the skin. These usually form in the neck, groin or armpit and are often discovered by accident.

Read more about the different symptoms of Follicular Lymphoma here.

How Is Follicular Lymphoma different from other cancers?​

Cancer is often thought of as being a very aggressive, fast-progressing disease that needs immediate treatment.

Follicular Lymphoma is a little different. This is because it generally doesn’t behave in the same way as other cancers. Instead, people with FL go through periods of active disease where they experience symptoms and require treatment, and periods of remission where no action is required (this is known as watch and wait).

Unlike many other cancers, Follicular Lymphoma is also usually diagnosed at an advanced stage, when it is detected at multiple sites within the body. This happens because it is a cancer that affects cells of the immune system, and these cells use your blood to move around your body. However, despite usually being diagnosed later, Follicular Lymphoma tumours rarely carry the same severity as ‘solid’ cancers, such as lung cancer.

How is Follicular Lymphoma treated?

Every patient with FL is unique and this means that no two treatment plans are the same. Your doctor will consider the stage and grade of your Lymphoma, your age, your general health and your overall diagnosis before deciding which treatment is right for you.

Initially, your doctor may recommend something known as ‘watch and wait’ or ‘active monitoring’. Unsurprisingly, many people feel anxious at the lack of action being taken, but there are times while living with Follicular Lymphoma that treatment isn’t necessary, such as when you aren’t experiencing any symptoms. Despite there being no visible signs of your cancer, you’ll still be living with it.

If your doctor feels that you need treatment, they will talk you through the treatment options available to you. These most often use treatment to your entire body (systemic) which can be intravenous or pills, including chemotherapy, antibody therapy or newer targeted agents. Less commonly used for FL are radiotherapy, or surgery, alone or in combination with systemic therapy. Since most treatments can cause side effects, your doctor will have to ensure that the benefits of treatment outweigh the potential side effects that you will experience. 

A small percentage of people (usually less than 15%) may find that their Follicular Lymphoma changes & becomes more acute. This is known as transformation. Read more about transformation here

Predicting the future of Follicular Lymphoma

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%.

But 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.

We want to help people live longer, enjoy happier and more fulfilling lives and have fewer worries about their disease returning. We just need your help. It takes one click to help save lives.

"When looking into my type of cancer, I realised 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