Let's Talk About Lymphoma
We've got the doctor-approved details on lymphoma causes, symptoms, treatments, and a jillion other facts and tips that can make facing life with this disease easier.by Sunny Sea Gold Health Writer
Whether you’ve just been diagnosed or worry you could have lymphoma, you’re probably nervous, confused, and maybe even a little scared. That’s normal, and everyone featured on HealthCentral with a serious illness felt just like you do now. But we—and they—are here for you. On this page alone, you’ll discover the realities and challenges of the condition, but also the best treatments, helpful lifestyle changes, wisdom from other people who have faced lymphoma, and all the critical information to help you not just manage—but thrive. We’re sure you’ve got a lot of questions...and we’re here to answer them.
Our Pro Panel
We went to some of the nation's top experts in lymphoma to bring you the most up-to-date information possible.
Jasmine Zain, M.D.
Director of the T Cell Lymphoma Program
City of Hope Comprehensive Cancer Center
Los Angeles, CA
Dhimant Patel, M.D.
Hematologist and Oncologist
Aurora BayCare Medical Center
Green Bay, WI
Andreas Klein, M.D.
Associate Chief, Division of Hematology Oncology
Tufts Medical Center
Lymphoma is a cancer of the lymphatic system. It’s sometimes called a blood cancer, or a “liquid” cancer. It happens when certain white blood cells known as lymphocytes mutate and start growing out of control. There are two main types of lymphoma: Hodgkin’s lymphoma (formerly known as Hodgkin’s disease) and non-Hodgkin lymphoma.
Doctors don’t know exactly, but lymphoma is likely related to DNA damage. Genes known as “oncogenes” trigger cell growth, while “tumor suppressor genes” slow it down—mistakes and mutations in a person’s DNA can turn these genes on or off, potentially leading to lymphoma. Lymphoma is not thought to be linked to genes or mutations passed down by our parents.
Yes. There are two main types of lymphoma, Hodgkin’s lymphoma and non-Hodgkin lymphoma. Hodgkin’s lymphoma used to be known as Hodgkin’s disease, after Thomas Hodgkin, the doctor who first described it in 1832.
Leukemia and lymphoma are both blood cancers that develop when white blood cells grow out of control. Lymphoma cells form tumors in the lymph nodes and other organs of the lymphatic system. In leukemia, the cancerous white blood cells don’t form tumors.
What Is Lymphoma, Exactly?
There are the cancers everyone has heard about. Breast. Lung. Colon. But when you say “lymphoma,” you may find yourself drawing blank looks from the person you’re talking to. (Unless it’s your doctor, of course.)
It’s not that rare, but it can be hard for people to understand because it’s a cancer that starts in blood cells and can affect several areas at once, rather than a solid tumor growing in an organ in the traditional cancer sense.
Lymphoma affects the blood and the lymphatic system—part of your body’s germ-fighting setup that includes lymph nodes (like the ones in your neck that get swollen when you have a bad cold), the spleen, bone marrow, and an immune gland in the chest called the thymus.
Lymphoma starts when infection-fighting white blood cells in your body called lymphocytes mutate and start to grow out of control.
Types of Lymphoma
There are more than 70 different “subtypes” of lymphoma, but all of them fall under two main categories: Hodgkin’s lymphoma—which used to be called “Hodgkin’s disease” after Thomas Hodgkin, the doctor who first described it in 1832—and non-Hodgkin lymphoma. An estimated 8,000 Americans are diagnosed with Hodgkin’s lymphoma each year, and about 74,000 will be diagnosed with NHL.
Hodgkin’s lymphoma and non-Hodgkin lymphoma are very, very similar, but they affect different types of lymphocyte cells.
Hodgkin’s lymphoma usually starts in white blood cells within lymph nodes located in the upper body—neck, chest, underarms—while NHL starts in lymph nodes anywhere in the body, including the groin and abdomen. People with Hodgkin’s lymphoma also have a type of cancer cell known as Reed-Steinberg; people with NHL don’t.
Under these two major umbrellas, there are dozens of variations of the disease. For instance, although most lymphocytes are in lymph nodes (which is why a majority of lymphomas start there), lymphocytes can also be found in “lymphoid tissues” in other places in the body, including the skin, digestive tract, and other organs. Lymphoma can start in any part of the body that contains lymphoid tissues and lymphocytes, and when it does, it gets its own sub-category of the disease.
Here are some of the subtypes of lymphoma:
anaplastic large cell lymphoma
B cell lymphoma
cutaneous lymphoma / skin lymphoma
indolent (slow-growing) non-Hodgkin lymphoma
mantle cell lymphoma
marginal zone lymphoma
nodular sclerosis Hodgkin lymphoma
primary central nervous system (CNS) lymphoma
T cell lymphoma
Lymphoma Survival Rate
Like any cancer, lymphoma is a serious condition—but the good news is that survival rates are high.
Hodgkin's lymphoma is often diagnosed at earlier, more treatable stages than NHL, and the percentage of people with Hodgkin’s who live at least five years after diagnosis is 87%. The average five-year survival rate for people with non-Hodgkin lymphoma is 71%. People diagnosed at the earliest stages have an even better outlook—five-year survival is an impressive 92% for Hodgkin's lymphoma and 82% for NHL.
Speaking of stages, Hodgkin’s and non-Hodgkin lymphomas are broken up into four basic stages that are used to describe how much the cancer has spread. Staging helps your medical team decide on the best treatments.
Hodgkin’s and non-Hodgkin lymphoma are staged between I and IV, depending on how many areas the cancer cells are found in and where they are located in the body.
In stage I, the cancer is found in only one area of the body, such as the lymph nodes in the underarm or the thymus gland in the chest.
Lymphoma is stage II if it’s found in two or more lymph node areas in the upper body or the lower body, but not both upper and lower body. (Doctors consider the dividing line to be the diaphragm right under your rib cage.)
Stage III lymphoma is found in lymph nodes in both the upper and lower body or in the upper body and the spleen.
In stage IV, the cancer cells have spread widely into at least one spot outside the lymphatic system, such as the lungs or liver.
Other Staging Details
Sometimes, doctors will add a letter “E”, “A/B,” or “X” to the stage for Hodgkin’s lymphoma.
An “E” means that lymphoma cells have been found in organs other than the lymph nodes or lymphatic organs.
A “B” means the person is having other symptoms of more-advanced lymphoma such as weight loss, fever, or night sweats.
An “A” means they’re not having these symptoms.
The letter “X” may be added to the stage if the lymphoma cells have formed a large tumor in the chest, also known as “bulky disease.”
What Causes Lymphoma in the First Place?
Doctors don’t know exactly what it is that triggers lymphocyte white blood cells to grow out of control, but we do know that, as with all types of cancer, DNA plays an important role in the development of the disease.
Your DNA contains genes that tell all the cells in your body how to behave. “Oncogenes” trigger cell growth, while “tumor suppressor genes” slow it down. Sometimes, there are mistakes and mutations in a person’s DNA that can turn these genes on or off. When that happens, it can potentially lead to lymphoma.
Sometimes, these changes are random; other times, they can be caused by exposure to cancer-causing chemicals or the way you live your life. These gene mutations are not believed to be hereditary—in other words, you did not get them from your parents.
Lymphoma Risk Factors
So now that you know possible causes of the disease, you’re probably wondering, am I at risk? These are some of the things that increase your susceptibility to developing lymphoma.
Remember, there is no lymphoma gene that can be passed down from parent to child. That said, if you have a parent, sibling, or child with lymphoma, you are at a slightly higher risk for it than someone without close relatives with the disease.
Becoming infected with certain viruses and bacteria can lead to lymphoma in some people, perhaps by overstimulating the immune system. (This is true with the developent of other types of cancer as well.) Don’t panic, though, exposure to these viruses and bacteria is common and most people don’t go on to get cancer. These possible cancer precursors include:
Hepatitis C (HCV)
Epstein-Barr virus (EBV), and a related virus known as human herpesvirus 8 (HHV8)
Human immunodeficiency virus (HIV)
Heliocobacter pylori (the bacteria that cause stomach ulcers)
Campylobacter jejuni (a common food poisoning bacteria)
Borrelia burgdorferi (the bacteria that causes Lyme disease)
In autoimmune disorders, your immune system attacks your body's tissues the way it would an invading virus or bacteria, causing widespread inflammation and other symptoms. People with severe cases of certain autoimmune disorders also have a higher risk of lymphoma, including:
Other Possible Risk Factors
Chemicals: Although evidence is still pretty limited, some research suggests that certain pesticides and old-fashioned hair dyes (from the 1970s and earlier) may slightly increase a person’s risk of developing lymphoma.
Smoking: Studies suggest that smokers have a slightly higher risk of some types of lymphoma than nonsmokers.
Diet: An eating style high in red meat, dairy, and animal fats has been linked to a slightly higher risk of lymphoma.
Breast implants: Textured (or “rough”) breast implants are linked to a very rare type of cancer called anaplastic large cell lymphoma that grows in the scar tissue around the implant and may spread to nearby lymph nodes.
Do I Have the Symptoms of Lymphoma?
Which of the 70 different subtypes of lymphoma you have can affect how quickly symptoms come on, and how sick you might feel. Many people may not have any symptoms at first—or they might be so mild that you just think you’re run down or fighting off a cold or flu.
These are some classic signs of lymphoma that should raise red flags, especially if you have more than one. (Of course, having one or more is no guarantee you have cancer, either.)
Swelling in the lymph nodes. Swollen lymph nodes—in the neck, groin, above the collarbone, or in the armpit—are the most common symptom of lymphoma. They’re usually not sore to the touch and might feel like a lump. In rare cases, you might feel pain in the lymph nodes after drinking alcohol.
Swollen stomach. Lymphoma in the spleen or lymph nodes in the abdomen can cause belly swelling.
Night sweats. Doctors aren’t exactly sure how or why lymphoma causes drenching night sweats, but it may be triggered by certain chemicals made by the cancer cells or by plain old fever.
Fatigue. Persistent tiredness and a feeling of weakness is a common cancer symptom. Unlike normal sleepiness or tiredness, this kind of exhaustion can’t be relieved by a nap or a good night’s rest.
Unexplained weight loss. If your body is using up energy and resources trying to fight off cancer, you can lose weight rapidly without trying.
Itchy skin. Immune chemicals called cytokines released in some forms of lymphoma irritate nerves within the skin, causing itchiness. (Sometimes, there can be a red, flaky, or blistery rash, too.)
Cold/flu symptoms. Lymphoma cells release substances that can increase body temperature, leading to fevers that come and go. If the lymphoma is in lymph nodes in the chest, you may experience pain behind the breastbone and coughing.
Bruising, bleeding, and infections. If lymphoma is growing in the bone marrow, it crowds out healthy tissue there, leading to slower production of white and red blood cells and platelets. Lower numbers of white cells can lead to infections, and fewer platelets mean easier bruising and excessive bleeding from little cuts and scrapes.
How Do Doctors Diagnose Lymphoma?
Doctors mainly diagnose lymphoma with a physical exam and biopsies. (They may also use blood tests and imaging to help rule other things out and keep tabs on the disease.)
A doctor who suspects lymphoma will pay close attention to any lumps or swollen areas and will probably poke and press on lymph nodes in your neck, under your arms, around your collar bones, and possibly in the groin. He or she will also feel your abdomen for any signs of a swollen spleen, an organ that’s part of the lymphatic system.
A doctor will surgically remove a bit of tissue, or sometimes an entire lymph node, and send it to a lab to be tested. Doctors need a fairly large sample, which is why they typically use a scalpel instead of a needle biopsy.
If the area the doctor wants to biopsy is easy to get to, you’ll probably just get some numbing medication and have a quick in-office procedure. If the area is deep in your chest or abdomen, you may need to be put to sleep for the procedure.
If only part of a lymph node or other tissue is taken out, it’s called an incisional biopsy. If an entire lymph node is removed, it’s called an excisional biopsy.
During the course of your lymphoma diagnosis and treatment, your doctor may order other tests such as total blood count tests or imaging such as CT scans in order to determine how far the lymphoma has spread and help stage the disease. In some cases, your doctor may want to take a closer look at a concerning area with a CT or PET scan before doing a biopsy.
What Is the Best Treatment for Lymphoma?
Because there’s no lump or tumor to remove the way there is with breast or lung cancer, lymphoma doesn’t usually involve surgery. Rather, treatment focuses on medications and other therapies where the main goal is to kill as many cancer cells as possible.
If your lymphoma is a slow-growing type and it’s not causing you any symptoms or discomfort, your doctor may suggest “active surveillance” or “watchful waiting” during early stages. This will let you live your life as normal, without dealing with time-consuming treatments and side effects until you really need to. In the meantime, you’ll get regular imaging or blood tests to keep close tabs on the progression of the disease.
Chemotherapy is one of the most common treatments for lymphoma. In a nutshell, chemo drugs kill cancer cells. Although some medicines are in pill form, chemo is usually delivered directly into someone’s bloodstream through an IV “infusion” or injection at a clinic or doctor’s office.
Doses are given in cycles of a few weeks at a time so that you can rest and recover from each treatment before having another. The length of time you will need chemotherapy treatments can vary, but it often lasts anywhere from four to six months.
Targeted Drugs and Immunotherapy
Rather than killing cancer cells directly the way chemotherapy does, targeted drugs and immunotherapy medications target certain proteins and receptors in the cancer cells themselves that slow growth, or boost your immune system is special ways to help it destroy cancer cells. This is an exciting and fast-evolving area of research; new therapies are being discovered and tested regularly.
Current targeted drugs and immunotherapy treatments for lymphoma include:
cellular immunotherapy using T cells
checkpoint inhibitors (such as proteasome, kinase, and histone deacetylase inhibitors)
monoclonal and other antibodies
immunomodulatory agents (IMIDs)
Radiation treatments use high-energy x-rays to kill cancer cells and help lower the chances that the cancer will come back. Radiation isn’t used in all lymphoma cases, but when it is, it’s done through a type of x-ray machine that points a beam of radiation at the area where cancer cells are concentrated. Treatments are given frequently, even daily, and can last for several weeks. Radiation can also help with pain and other symptoms of lymphoma.
Stem Cell Transplant
Stem cell transplants, also known as bone marrow transplants, are sometimes used to treat lymphoma that has come back after an initial round of treatment. It’s not a very common treatment for lymphoma, but popularity is growing because it can be very effective.
Here’s how it works:
Stem cells called hematopoietic cells live in the bone marrow and make all your blood cells.
In a stem cell transplant, healthy hematopoietic cells are collected from either you or a donor and given to you through an IV.
These stem cells travel to the bone marrow and grow into healthy red and white blood cells and platelets.
When your own cells are transplanted, it’s called an autologous transplantation; if the cells come from a donor (usually a sibling), that’s called an allogeneic transplantation.
Does Lymphoma Treatment Cause Complications?
Yes, it can. Different treatments have different risks and side effects, but these are some of the most common (or concerning) ones:
increased cholesterol or blood sugars
increased risk of infection
infertility or early menopause
Targeted Drugs and Immunotherapy
redness, blistering, or peeling of skin in the area being treated
Stem Cell Transplant
graft-versus-host disease (GVHD), in which transplanted stem cells from a donor attack your body tissues, causing inflammation
Virtually no treatment is without side effect, and lymphoma is no exception. One small positive: There are a growing number of medications that can help ease your discomfort such as anti-nausea drugs. Talk with your doctors if you are having trouble dealing with some of the lymphoma treatment side effects. You are far from alone, and they can help you find some relief.
What's Life Like for People with Lymphoma?
Being diagnosed with lymphoma is upsetting, for sure, and can make you feel anxious about what your future will hold. (Not to mention stressing over the really-not-fun side effects from treatment.)
You may also encounter coworkers, friends, or family members who just don’t get what lymphoma is or what you’re going through. Take things one step at a time: Educate yourself about the disease, ask your medical team a million questions (trust us, they’ve been asked them a million times before), and enlist the help of a friend or loved one to go to appointments with you.
Above all, stay focused on the positive: There are more treatments for the disease than ever, survival rates are increasing at a good clip, and research is happening right at this moment to find new ways to keep the cancer at bay and improve patients’ quality of life. In fact, Hodgkin’s lymphoma is considered one of the most curable cancers. You’ve got this.
Where Can I Find Lymphoma Communities?
Finding and talking to people who know exactly what you’re going through can be just as important as finding a treatment plan that works. Here are some places to start to make connections, find resources, and meet friends.
Top Lymphoma Bloggers/Instagrammers
Follow because: This book author and Instagram influencer was diagnosed with stage IVB Hodgkin’s lymphoma after three years of being misdiagnosed. Her Instagram is full of bright and aspirational photos, and her blog is packed with super-helpful information about everything from dating during cancer treatment to wigs 101.
Sheena Becton, @fightwithsheena
Follow because: Sheena started posting about her Hodgkin’s lymphoma in early 2020, announcing: “[Hodgkin’s lymphoma is] the uninvited guest in my life right now. Just moved right on in and is paying NO RENT….RUDE AS HELL!” Funny and irreverent, her posts are sure to make you laugh (and maybe cry once in a while).
Melinda Kirby, @melinda_kirby
Follow because: There’s something endearing about the fact that she’s a registered nurse, mom, wife, and lymphoma fighter — she’s relatable on so many levels. Every post is sprinkled with either a dose of her diagnosis, adjusting to wig-life, mommin’ through chemo-life, or glimpses into life as a nurse with a compromised immune system. Whether you have lymphoma or not, you still kind of want to follow her because she’s just so real.
Top Lymphoma Podcasts
The Bloodline with LLS. This podcast from the Leukemia and Lymphoma Society focuses on helping patients navigate diagnosis, treatment, and the resources available to help them live their best lives while fighting this disease.
Cure Talks. This podcast covers issues faced by folks living with any kind of cancer. Episodes discuss the obstacles and treatments people living with cancer go through.
The Cancer Game Plan. While this podcast doesn’t focus specifically on lymphoma, the themes and guests will be relatable to anyone facing lymphoma. The hosts of this weekly show talk to a new inspiring cancer warrior every week about their journeys—plus their “funniest” cancer moment and their top tips for living with cancer.
Top Lymphoma Support Groups and Nonprofits
The Lymphoma Research Foundation. This non-profit group offers all kinds of information and resources, but one of their most amazing benefits is the LRF Helpline staffed by trained volunteers. They can answer your questions on diagnosis and treatment, and even offer referrals to local support and medical teams.
Leukemia and Lymphoma Society. The LLS is a major fundraising group that aims to find new treatments and cures. The LLS hosts runs, walks, and other events around the country and has a huge online library of educational info for patients and their families, including fact sheets, brochures, videos, and more.
Lymphoma Action. This UK charity focusing on lymphoma has a wealth of detailed information about treatments and diagnosis online, as well as busy patient forums where people can ask questions and share their stories.
- Hodgkin’s vs. Non-Hodgkin Lymphoma: Moffitt Cancer Center. (n.d.) “Differences Between Hodgkin & Non-Hodgkin Lymphoma.” moffitt.org/cancers/lymphomas-hodgkin-and-non-hodgkin/faqs/hodgkin-lymphoma-vs-non-hodgkin-lymphoma/
- Hodgkin’s Survival and Prevalence: American Society of Clinical Oncology. (2019). “Lymphoma - Hodgkin: Statistics.” cancer.net/cancer-types/lymphoma-hodgkin/statistics
- Non-Hodgkin Survival and Prevalence: American Society of Clinical Oncology. (2019). “Lymphoma - Non-Hodgkin: Statistics.” cancer.net/cancer-types/lymphoma-non-hodgkin/statistics
- Non-Hodgkin Staging: American Cancer Society. (2018). “Non-Hodgkin Lymphoma Stages.” cancer.org/cancer/non-hodgkin-lymphoma/detection-diagnosis-staging/staging.html
- Hodgkin’s Staging: American Cancer Society. (2018). “Hodgkin Lymphoma Stages.” cancer.org/cancer/hodgkin-lymphoma/detection-diagnosis-staging/staging.html
- Lymphoma Causes: Lymphoma Action. (n.d.). “Causes of Lymphoma.” lymphoma-action.org.uk/about-lymphoma-what-lymphoma/causes-lymphoma
- Breast Implants and Lymphoma: Cleveland Clinic. (2019). “Breast Implant-Associated Anaplastic Large Cell Lymphoma.” clevelandclinic.org/health/diseases/21078-breast-implant-associated-anaplastic-large-cell-lymphoma
- Weight Loss and Lymphoma: American Cancer Society. (2018). “Signs and Symptoms of Hodgkin Lymphoma.” cancer.org/cancer/hodgkin-lymphoma/detection-diagnosis-staging/signs-and-symptoms.html
- Fatigue: Lymphoma Research Foundation. (2015). “Cancer-Related Fatigue.” lymphoma.org/wp-content/uploads/2017/07/LRF_FACTSHEET_CANCER_RELATED_FATIGUE.pdf
- Itchiness: Moffitt Cancer Center. (n.d.) “What Does a Rash From Hodgkin Lymphoma Look Like?” moffitt.org/cancers/hodgkin-lymphoma/faqs/what-does-a-rash-from-hodgkin-lymphoma-look-like/
- Bruising/Bleeding: University of Michigan Rogel Cancer Center. (n.d.) “Hodgkin and Non-Hodgkin Lymphoma Symptoms.” rogelcancercenter.org/blood-cancer/resources-patients/leukemia-and-lymphoma-awareness/lymphoma-symptoms
- Lymphoma Diagnosis: American Cancer Society. (2018). “Tests for Non-Hodgkin Lymphoma.” cancer.org/cancer/non-hodgkin-lymphoma/detection-diagnosis-staging/how-diagnosed.html
- Targeted Drugs and Immunotherapy: American Cancer Society. (2019). “Immunotherapy for Non-Hodgkin Lymphoma.” cancer.org/cancer/non-hodgkin-lymphoma/treating/immunotherapy.html
- Radiation: American Cancer Society. (2019). “Radiation Therapy for Non-Hodgkin Lymphoma.” cancer.org/cancer/non-hodgkin-lymphoma/treating/radiation-therapy.html
- Stem Cell Transplant: American Cancer Society. (2019). “High-Dose Chemotherapy and Stem Cell Transplant for Non-Hodgkin Lymphoma.” cancer.org/cancer/non-hodgkin-lymphoma/treating/bone-marrow-stem-cell.html