Receiving a diagnosis of low-grade follicular lymphoma (FL) can feel overwhelming. It’s important to know that low-grade FL is manageable, and many people can still lead full lives with the condition.

Read on to learn what low-grade FL is, what treatments your doctors might recommend, and the prognosis (outlook). You’ll also find tips on how to get started on this journey after a low-grade FL diagnosis.

What Is Low-Grade Follicular Lymphoma?

FL is a type of non-Hodgkin lymphoma (NHL). Low-grade FL is the most common type of NHL, accounting for about 30 percent of all cases. Low-grade lymphoma can develop at any time but usually affects people aged 60 and above.

Low-grade follicular lymphoma grows slowly and causes fewer symptoms compared to high-grade follicular lymphoma.

Lymphomas are blood cancers that affect the blood cells in the immune system. FL develops from white blood cells called B lymphocytes or B cells. B cells make antibodies, which are proteins that help protect us from infections. In low-grade FL, gene changes in B cells cause them to become abnormal, live too long, and pile up in the body. The high number of abnormal B cells leads to FL symptoms.

What Does ‘Low-Grade’ Mean?

FL is caused by too many abnormal B cells. A grade is a number your doctor assigns when they diagnose your FL. The grade of FL refers to the growth rate of the B cells and is determined from bone marrow biopsy samples.

There are four grades of FL:

• Grade 1
• Grade 2
• Grade 3A
• Grade 3B

When FL is diagnosed as grade 1, 2, or 3A, it’s considered low-grade. Low-grade FL is indolent — slow-growing — and doesn’t cause as many symptoms as higher-grade FL. This differs from high-grade (grade 3B) FL, which grows faster. Although low-grade FL grows slowly, catching it early can lead to better results.

Grade vs. Stage of Follicular Lymphoma

The stage of FL is different from the grade. Your health care team will stage FL using positron emission tomography (PET) scans to see how many places it has spread in the body. Most cases of FL are diagnosed in stages 3 and 4. There are four stages:

• Stage 1 — FL causes little to no symptoms, affecting only a single lymph node or group of lymph nodes.
• Stage 2 — FL affects two or more groups of lymph nodes that are located on the same side of the diaphragm (the muscle that separates your chest from your abdomen into upper and lower halves).
• Stage 3 — FL affects both the upper and lower halves of the body or only above the diaphragm but includes the spleen.
• Stage 4 — FL is found in at least one organ outside the lymph system, such as the bone marrow, liver, or lung.

Grade refers to the speed at which lymphoma cells grow, and stage refers to how far they’ve spread in the body.

Prognosis of Low-Grade Follicular Lymphoma

The outlook for low-grade follicular lymphoma depends on its stage and how well your body responds to treatment. In most cases, low-grade FL grows slowly, and many people can live for many years after diagnosis. If diagnosed early, the prognosis can be improved with more effective treatments.

Most people can live for many years with low-grade follicular lymphoma, especially if it’s diagnosed and treated early.

Overall survival rates at five, 10, and 15 years have increased in FL with new treatments. Low-grade FL is considered to be incurable. Yet, with new therapies, some people can achieve remission — where the signs and symptoms go away — for many years, although they may later have a relapse of FL. Regular follow-up and communication with your health care team are important for better outcomes.

Treatment Options for Low-Grade Follicular Lymphoma

Treatment options for low-grade FL depend on the stage at diagnosis. In very early stages, your health team may recommend watchful waiting while treatment is not yet needed. As low-grade FL starts to progress, the initial treatment can be radiation therapy (radiotherapy) to help destroy excessive B cells.

As low-grade FL gets worse, your health care team may recommend immunomodulatory drugs that modify your immune system. They might also recommend immunotherapy, a newer treatment that boosts your immune system to help it fight cancer. Monoclonal antibodies such as rituximab (Rituxan) and obinutuzumab (Gazyva) work by targeting and removing B cells either on their own or with chemotherapy.

Newer treatment options are helping people with low-grade follicular lymphoma live longer than ever before.

Epcoritamab-bysp (Epkinly) is a type of T-cell therapy called a bispecific T-cell engager. It works by helping T lymphocytes (also called T cells) target and kill FL cells. It may be an option for people whose FL has come back or hasn’t responded to other treatments.

Your cancer care team may also recommend a chemotherapy regimen along with prednisone to help lower the number of extra B cells. In advanced-stage FL, a more intensive treatment like a bone marrow transplant — where damaged bone marrow is replaced with healthy cells — may be needed to keep the disease under control.

Researchers are continuing to study effective treatments for FL in clinical trials.

What To Do After a Low-Grade Follicular Lymphoma Diagnosis

If you or a loved one has a low-grade FL diagnosis, you may be wondering what’s next. The first step is to stay calm and try not to be overwhelmed. This approach will help you to have a positive and logical approach to your upcoming care. Educate yourself on the condition and treatment options. Lastly, it’s important to take care of yourself. To promote well-being, adopt a healthy lifestyle and stay connected with family, friends, or cancer support groups.

Learn About Your Condition

Learning about low-grade FL will help you understand your diagnosis and treatment options. Keep in close contact with your health care team to stay informed about any updates or personal care options for your condition. Online resources are available to help you better understand FL.

Find Your Health Care Team

You’ll have a team of health care providers to help manage your low-grade FL. These efforts may be led by a hematologist (blood doctor) or oncologist (cancer doctor) specializing in lymphoma. You can ask your oncology team for recommendations or search using resources from the National Cancer Institute. Remember, you can get a second opinion at any time.

Consider Lifestyle Changes To Feel Your Best

Small life changes can sometimes help you lead a healthier lifestyle with FL. Some general lifestyle tips that have been shown to help people with cancer are:

• Stop smoking.
• Eat a healthy diet.
• Exercise often.
• Reduce alcohol consumption.

By making these changes, you can improve your well-being and strengthen your body. This can help you face FL with a healthier and more positive outlook. Make sure to stay on top of any other health conditions you have. Your mental health is important, too. Don’t be afraid to seek support from others and talk to your health care team if you’re having trouble.

Find Your Team

On MyLymphomaTeam, the social network for people with lymphoma and their loved ones, more than 20,000 people come together to ask questions, give advice, and share their stories with others who understand life with follicular lymphoma.

Have you been diagnosed with low-grade follicular lymphoma? How have you been handling this change? Share your experience in the comments below, or start a conversation by posting on your Activities page.