How to Talk to Your Doctor About Follicular Lymphoma

Medically Reviewed by Laura J. Martin, MD on April 09, 2022
5 min read

It’s not easy to hear you have follicular lymphoma. A subtype of non-Hodgkin lymphoma, this slow-growing, treatable cancer is considered rare, and may not be something you’ve heard of or know much about.

It helps to know what to expect, so you can make decisions that are right for you.

One of the most important things you can control right now is communication. There’s a lot of general information out there about your disease, but only your doctor can speak specifically about your condition and plan for treatment.

After your diagnosis, have a detailed conversation with your doctor. Are you the kind of person who wants to know every detail, or just the highlights? List your questions ahead of time; use the ones below to get started. During your appointment, either take notes or record the conversation, as long as it’s OK with your doctor. It may also help to take along someone you trust to take notes for you, or just be a second set of ears.

If you don’t understand something, it’s OK. Cancer has its own language, and this can be an overwhelming process. Just ask your doctor to explain it in a different way. This isn’t the last time you’ll get to ask questions about your disease, but it’s a good place to get started. 

There are four stages of follicular lymphoma:

  • Stage I: There is cancer in one lymph node or lymph node area.
  • Stage II: Cancer is in 2 or more lymph nodes or lymph node areas on one side of the diaphragm.
  • Stage III: There is cancer in lymph nodes on both sides of your diaphragm
  • Stage IV: Cancer has spread beyond your lymph nodes to bone marrow or other organs.

Your doctor will use one or more tests, including a biopsy, PET scan, or CT scan to determine your stage.

For many, this is the most critical question of all. Although new treatments are being researched and tested all the time, follicular lymphoma is not currently a curable disease. But it grows so slowly in most cases that doctors consider it to be a chronic illness: Something you can live with, and live well, for many years.

“Watchful waiting” and “active surveillance” are common phrases in follicular lymphoma treatment. Because this form of cancer often spreads slowly, it means that your health care team may choose not to start treatment right away. They’ll test you regularly instead until the cancer starts to cause problems. 

If treatment is the right thing for you, your doctor may recommend one or a combination of these methods, depending on the stage of your disease:

Radiation is often used to treat early stage follicular lymphoma. It’s usually done only on the areas of your body affected by lymphoma.

Monoclonal antibody therapy is given by an IV infusion to attack cancerous lymph cells.

Chemotherapy is an IV method that puts anti-cancer drugs in your bloodstream to cover most areas of your body.

Targeted therapy through medication is a way of using drugs to target cancer cells and leave the healthy ones alone.

Immunotherapy uses drugs that show your immune system how to find and attack cancer cells in your body.

A bone marrow or stem cell transplant becomes an option if other treatments haven’t reduced the amount of cancer in your body. First, chemotherapy that is sometimes combined with radiation therapy keeps your immune system quiet. Then doctors can infuse healthy bone marrow stem cells, either from your own body or a donor, into your body.

Chimeric Antigen Receptor (CAR) T-cell therapy may be an option if your cancer doesn’t respond or returns after two rounds of standard treatment. White blood cells are removed from your body and changed in a lab so that they’ll attach to a specific protein on a cancer cell called an antigen. These cells are then infused back into your body so they can go to work attaching to cancer cells and killing them.

As your immune system works to fight the cancer, it releases chemicals into your blood called cytokines. This rush of chemicals can cause fever, chills, severe nausea and vomiting, tiredness, headaches, and pain. You may also have a greater risk for infections after this treatment. Other possible side effects include allergic reactions and nervous system problems such as dizziness, confusion, or seizures.

You’ll need to go to a special treatment center to have it, and doctors will watch you closely for several weeks after the procedure.

No matter what treatment your doctor recommends, there are more questions that you can use to follow up:

  • What is the goal of this treatment?
  • Where will I have it? At home? In the hospital? At a facility?
  • How often will I have it?
  • How long do you expect me to have this treatment?
  • Will I be able to work during treatment?

Every method of treatment comes with a range of possible side effects. For example, chemotherapy may make you feel tired, nauseated, and cause your hair to fall out.

Most side effects can be managed with medication, and symptoms often go away when you stop treatment. Ask your doctor what can be done to relieve any side effects you may have.

Some forms of treatment may affect your fertility. If you plan to have children in the future, ask your doctor about your options.

Because follicular lymphoma isn’t currently curable, there’s always a chance it will come back if it goes into remission. There’s also a chance that your cancer won’t respond to the first treatment you try.

There many factors involved, including your age, overall health, the stage of your disease, and type of cancer cells you have. Using those details, along with information about how your body responded to the first treatment, your doctor will consider many other options, or a combination of them, for a second-line treatment.

Your health plays a big part in how well you weather treatment. Focus on healthy foods, like lean meats, fruits, vegetables, and whole grains. Your doctor may recommend a nutritionist or supplements. Exercise during treatment is good for both your body and your mind. Ask your doctor what forms of exercise might be best for your body.

This depends on whether or not your doctor recommends treatment. If you’re in watchful waiting mode, your doctor can tell you when to return for benchmark tests. If you’re having treatment, your doctor should be able to share a schedule or connect you with someone who can. 

There’s more to cancer treatment than the physical side. It’s a mental, emotional, and spiritual process as well. No matter where you live, or what your income level is, there are online or in-person support groups and oncology social workers and therapists who can help. If your doctor doesn’t give you these resources, ask for information.