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Being diagnosed with follicular lymphoma can bring up many questions about the future. However, treatments have improved a lot in recent years, helping people live longer and manage the disease better. In this article, we’ll explain key factors that affect survival rates, like cancer stage, your age, and other health details.
Follicular lymphoma is the most common type of non-Hodgkin lymphoma (NHL). Unlike some other cancers, follicular lymphoma usually doesn’t run in families, but certain genetic mutations (changes in DNA) can be passed down and increase the risk of developing it. This type of lymphoma tends to grow slowly and can often be managed for many years with treatment — and, in some cases, without it. Although follicular lymphoma isn’t considered curable, many people live long lives with proper treatment. In general, overall survival rates are very good for follicular lymphoma compared to other types of cancer.
The five-year survival rate for follicular lymphoma is about 90 percent, meaning that 9 out of 10 people are still alive five years after diagnosis. This is a very positive outlook compared with many other types of blood cancer.
Looking at a longer time frame, 76 percent to 83 percent of people with follicular lymphoma are still living 10 years after diagnosis. Because follicular lymphoma grows slowly, many people live relatively normal lives while managing the disease with ongoing treatment.
The stage of follicular lymphoma refers to how much the cancer has spread at the time of diagnosis. Like many cancers, follicular lymphoma is divided into stages from 1 to 4. Earlier stages mean the cancer is more localized (in one area), and later stages involve more areas of the body. The earlier follicular lymphoma is caught, the better a person’s chances of surviving five years after the diagnosis.
In stage 1 or 2, follicular lymphoma is limited to one or two areas, usually within the same group of lymph nodes. The outlook for these stages is very good, with a five-year survival rate of 97 percent for stage 1 and 90 percent for stage 2, according to the National Institutes of Health Surveillance, Epidemiology, and End Results Program. Many people in these early stages have no symptoms, and treatments such as localized radiation may be enough to shrink the tumor. Some people may not need immediate treatment and can be monitored over time.
In stage 3 or 4, the lymphoma has spread to lymph nodes that are far apart or to other organs, like the bone marrow or liver. Even though this is considered advanced follicular lymphoma, it’s still slow-growing. The five-year survival rate is 89 percent for stage 3 and 84 percent for stage 4. People with advanced follicular lymphoma can often live many years with ongoing treatment to keep the disease under control.
Age plays an important role in how follicular lymphoma affects someone’s prognosis (outlook). For those diagnosed with follicular lymphoma before age 60, survival rates are around 95 percent. People over 60 may have slightly lower survival rates. Studies show that about 85 percent of people over 60 are still alive five years after diagnosis. With proper medical care and regular monitoring, many older adults continue to live well for many years while managing their follicular lymphoma.
Doctors use the Follicular Lymphoma International Prognostic Index (FLIPI) to help estimate survival rates and predict how well someone with follicular lymphoma might do over time. This scoring system takes into account five risk factors, with each linked to a person’s prognosis. These risk factors include:
Doctors add up an individual’s number of risk factors to place that person in one of three risk groups:
People in the low-risk group tend to have the best survival rates, with a five-year survival rate of 91 percent. Those in the high-risk group have a lower survival rate of around 53 percent. However, with advances in treatment, people in all risk categories can live for many years with follicular lymphoma. It’s also important to remember that the FLIPI is just one tool doctors use and doesn’t predict individual outcomes — everyone’s situation is different.
In addition to age and the stage of follicular lymphoma, several other factors can influence how long someone might live with the disease. Here are some of the most important factors to consider.
Research has shown that certain genetic mutations and biomarkers can affect how follicular lymphoma progresses. For example, mutations in the TP53 gene are linked to a worse prognosis. Testing your cancer cells for biomarkers could help your doctor predict how follicular lymphoma will behave and what treatments will be most effective.
Some people respond very well to initial treatment and have a complete response, which means no signs of cancer remain. This can be a good sign for long-term survival. Others may not respond as well at first and may need more aggressive treatments. If follicular lymphoma relapses or becomes refractory (comes back or resists treatment), your doctor might switch to a different therapy to manage the disease. Joining a clinical trial may be another option.
People who are generally healthy at the time of diagnosis tend to have better outcomes. Having other health problems, such as heart disease or diabetes, can make it harder to manage follicular lymphoma. These other conditions, known as comorbidities, can weaken the body and affect how well someone responds to treatment.
While follicular lymphoma itself doesn’t usually cause immediate life-threatening problems, other health issues, called complications, can arise. Understanding these risks can help you stay aware of potential problems and get the right care when needed.
In about 25 percent to 60 percent of people with follicular lymphoma, the slow-growing lymphoma can turn into a faster-growing type of lymphoma, such as diffuse large B-cell lymphoma (DLBCL). Transformation can make the disease harder to treat and often requires more aggressive therapies. This serious complication lowers survival rates but can still be managed with the right care.
People with follicular lymphoma, especially those undergoing treatments like chemotherapy, can have a weakened immune system. They may be more vulnerable to infections like pneumonia or sepsis (a severe immune response to infection), which can be life-threatening if not treated quickly. Regular monitoring and vaccinations can help reduce the risk of serious infections.
Some treatment options for follicular lymphoma, such as chemotherapy, radiation therapy, or bone marrow transplants, can cause side effects that might lead to other problems. For example, these treatments can increase the risk of secondary cancers or damage the heart and lungs over time. Close follow-up care is important to catch any side effects early.
Some prognostic factors (details that affect your outlook) are within your control. One of the most important steps you can take is to follow your treatment plan exactly as prescribed. Sticking to your prescribed treatments and going to all follow-up appointments will help you stay on top of your health.
Eating well, exercising, and managing other health conditions such as high blood pressure or diabetes can also improve your overall outlook. Let your oncology team know if you experience new symptoms or if something doesn’t feel right. Early treatment can often prevent serious issues down the road.
On MyLymphomaTeam, the social network for people with lymphoma and their loved ones, more than 19,000 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.
Did you discuss your prognosis with follicular lymphoma with your doctor? Are you taking any steps to improve your outlook? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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Leonora Valdez Rojas, M.D.
received her medical degree from the Autonomous University of Guadalajara before pursuing a fellowship in internal medicine and subsequently in medical oncology at the National Cancer Institute.
Learn more about her here.
Zoe Owrutsky, Ph.D.
earned her Bachelor of Science from the University of Pittsburgh in 2014 and her Ph.D. in neuroscience from the University of Colorado Anschutz Medical Campus in 2023.
Learn more about her here.
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