You've learned that you have diffuse large B-cell lymphoma (DLBCL). What happens now?
A cancer diagnosis can feel overwhelming. You might not know what to do first. Start by having a conversation with your doctor.
Find out as much as you can about your cancer, its treatment, and how it could affect your life. Take detailed notes or ask someone to go with you to help you take notes and process what you've learned.
If you're not sure what to ask, take this list of questions with you to your doctor’s appointment. Write down the answers in a notebook or enter them on your smartphone.
What stage is my DLBCL?
Once your doctor confirms that you have DLBCL, the next step is to figure out your stage. The stage tells where the cancer is in your body. Staging your cancer helps your doctor find the right treatment.
Stages I and II are called early stage DLBCL. Stages III and IV are late-stage DLBCL. Most people have late-stage DLBCL when they're diagnosed.
Your doctor will find out your stage using these tests:
- Blood tests
- Computed tomography (CT) scan, which uses a series of X-rays to find cancer
- Positron emission tomography (PET)/CT scan, which uses a small amount of radioactive dye to find areas of cancer
Which subtype of DLBCL do I have?
There are a few subtypes of DLBCL. Each one has a different treatment and outcome.
Primary mediastinal B-cell lymphoma starts in a part of your chest called the mediastinum. It grows quickly, but it responds well to treatment.
Primary central nervous system (CNS) lymphoma affects the brain and spinal cord.
Diffuse large B-cell lymphoma not otherwise specified (DLBCL-NOS) are a group of cancers that don't fall into any other subtype. Cancer doctors group them based on genetic markers on the surface of the cancer cells.
Should I get a second opinion?
It's a good idea to ask for another doctor's opinion. Getting a second opinion can reassure you that you've gotten the right diagnosis and you're on the correct treatment path. You might also learn about a treatment you didn't know about before.
Who will be on my treatment team?
Each of these experts plays a different part in your care:
- Medical oncologist. This doctor treats cancer with chemotherapy and other drugs.
- Hematologist. This doctor treats diseases of the blood, including blood cancers like lymphoma.
- Radiation oncologist. This specialist will give you radiation if you need it.
- Pathologist. This specialist helps your doctor diagnose lymphoma by looking at samples of your blood and examining tissue from a biopsy.
- Oncology nurse. The nurse gives you medications, coordinates your care, and teaches you about your treatment.
What are my treatment options?
Which treatment your doctor recommends depends on the stage and subtype of your cancer.
The most common DLBCL treatment is a combination of five medicines known as R-CHOP. It includes the immunotherapy drug rituximab (Rituxan), plus three chemotherapy drugs, and a steroid.
R-CHOP is usually given in cycles. You get the medicines once every 21 days, for six cycles. Sometimes other chemotherapy drugs or radiation are added to this treatment.
What can I expect from treatment?
Treatment puts many people with DLBCL into remission, which means there are no signs or symptoms of cancer in your body. But the cancer can come back, or relapse. Your doctor will watch you for relapses and start you on another treatment if your cancer does return.
What side effects could treatments cause?
Side effects can be different for each person. Some of the most common side effects from R-CHOP are:
- Increased risk of infection
- Shortness of breath
- Bruising and bleeding
- Tiredness and weakness
- Hair loss
- Mouth sores
Ask your doctor what to do if you have side effects.
Should I join a clinical trial?
You might want to think about joining a clinical trial. Taking part in one of these studies could give you access to a treatment that's not available to everyone else. You could benefit if the new treatment is better than the current one.
But clinical trials have risks, too. The treatment might not be as good as the standard ones for DLBCL, or it might not work for you. Talk to your doctor about the possible benefits and risks before you enroll in a study.
What outcome can I expect?
DLBCL is an aggressive and fast-growing type of lymphoma. But with the right treatment, about 2 out of 3 people with this cancer can be cured. Early-stage cancers have a better outlook than later-stage ones, but the outcome is unique to each person.
Could my cancer come back after treatment?
Yes. Cancer that returns after treatment is called relapsed DLBCL. You're most likely to relapse within the first 2 years after you finish treatment.
What happens if my cancer relapses?
The next step might be high-dose chemotherapy, also called salvage therapy. The goal of this treatment is to wipe out as many cancer cells as possible. Then you may have a stem cell transplant, which replaces your own damaged blood cells with healthy ones from yourself or a donor. New immunotherapy and targeted therapy treatments are also available for relapsed DLBCL.
What support services are available to help me?
A cancer diagnosis can be stressful. Getting the right support will help you manage all the changes cancer has brought into your life.
Your care team is one place to turn for support. They'll teach you about your cancer and how to manage it. Your hospital should also have a social worker or cancer navigator. They can help coordinate your medical care and find resources to help you pay for treatment.
Support groups offer a place to talk with other people with lymphoma. You can ask questions and share your experiences in a safe and nurturing space.
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American Cancer Society: "Survival Rates and Factors That Affect Prognosis (Outlook) for Non-Hodgkin Lymphoma," “Types of B-cell Lymphoma.”
Cancer Research UK: "R-CHOP."
Fox Chase Cancer Center: "Three Reasons to Seek A Second Opinion for Lymphoma."
Leukemia & Lymphoma Society: "Support Groups."
Lymphoma Action: "Diffuse Large B-Cell Lymphoma," "Staging of Lymphoma," "Stem Cell Transplants."
Lymphoma Research Foundation: "Diffuse Large B-Cell Lymphoma: Treatment Options," "Understanding Diffuse B-Cell Lymphoma."
Mayo Clinic: "Lymphoma."
National Cancer Institute: "Deciding to Take Part in a Clinical Trial."
NYU Perlmutter Cancer Center: "Cancer Navigator Program."
UpToDate: "Diffuse large B cell lymphoma in adults (Beyond the Basics)."