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“No one told me how bad these night sweats would be!”
“I don’t have anywhere near the energy that I used to have.”
“Someone make the itchy skin stop!”
“Who knew coughing was a symptom of lymphoma?”
These are just a few of the real experiences shared by members of MyLymphomaTeam, the social network for people living with lymphoma. If any of these sound familiar, you’re not alone — and you’re in the right place.
This article focuses on Hodgkin lymphoma (HL), a type of blood cancer. Understanding the signs and symptoms of HL can help you recognize what’s happening in your body, talk to your doctor sooner, and feel more prepared for what comes next.
Hodgkin lymphoma, also known as Hodgkin’s disease, is a type of blood cancer and one of the two main types of lymphoma. Lymphoma is related to other blood cancers, including leukemia, myeloma, and myeloproliferative neoplasms. About 10 percent of all lymphomas are HL. The rest fall into a larger group called non-HL.
Understanding the signs and symptoms of HL can help with early diagnosis and give you a better idea of what to expect when living with the condition.
Lymphomas start in the lymphatic system, which is part of the immune system and circulatory system. This network includes the lymph nodes, lymph channels, bone marrow, spleen, thymus, tonsils, and tissue in the digestive tract. It helps fight infections, remove waste from the body, and drain excess fluid from tissues.
Reed-Sternberg cells in lymph nodes or bone marrow help doctors distinguish HL from other lymphomas. Reed-Sternberg cells are a specific type of abnormal lymphocyte (a kind of white blood cell). There are five different types of HL, including four types of classical HL as well as nodular lymphocyte-predominant HL (NLPHL).
HL usually develops in adolescents and young adults. It’s a very treatable cancer with an excellent survival rate.
What’s the difference between signs and symptoms? Symptoms are what a person experiences, while signs are what a healthcare provider can observe or measure.
For example, you may report symptoms of “dizziness” and “feeling lightheaded,” and your doctor may find that you have low blood pressure — a sign that can be measured.
Sometimes, signs and symptoms overlap. A person may complain of itching and a rash — both symptoms — but a rash, or skin lesion, is also a sign that a doctor can see.
Sometimes, people may have signs without any symptoms. For example, a doctor may find an enlarged spleen during a physical exam, but you may not have noticed any effects — or symptoms — from it.
What does HL feel like? There’s no single symptom that sets it apart. Instead, a combination of symptoms can help define the disease. Symptoms can affect the whole body (systemic) or a specific area (localized). As a general rule, see a doctor if symptoms last more than two weeks or interfere with daily life.
Three specific symptoms — unexplained fever, unexplained weight loss, and drenching night sweats — are called “B symptoms.” These symptoms can also occur with other conditions, but how often they occur and how severe they are help doctors determine the stage of HL and a person’s prognosis (outlook):
B symptoms are believed to result from the body’s immune response to cancer cells. Doctors use these symptoms, along with other findings, to help assess the progression of HL.
Systemic symptoms affect the whole body. In addition to B symptoms, there are several other common systemic signs and symptoms of lymphoma, including enlarged lymph nodes (if multiple), fatigue, itching, sensitivity to alcohol, and frequent infections.
Many wonder, what are the first signs of HL? Swollen lymph nodes are the most common symptom. Unlike those caused by infections, lymphoma-related swelling is usually painless. Lymph nodes are found throughout the body, usually in clusters along large blood vessels and nerves. Some are deep inside the body, while others are closer to the skin.
The most common swollen lymph nodes in HL develop in the armpits, groin, neck, collarbone, and jaw. You may have felt some of these lymph nodes, especially in the head and neck, as swollen “glands” that occur with common bacterial and viral infections. Infections can cause painful swelling, but swelling from lymphoma is usually painless.
It’s normal for lymph nodes to occasionally become enlarged, but if swelling lasts more than a few weeks or grows larger than 1.5 centimeters, it may be a sign of lymphoma. NLPHL often causes enlarged lymph nodes in the neck, groin, and underarms.
Fatigue describes more than just being tired or exhausted. Fatigue is ongoing physical or mental tiredness or exhaustion that doesn’t improve with rest. Many illnesses can cause fatigue, but in the case of lymphoma and associated leukemias, fatigue can be caused by anemia, a lack of red blood cells.
Unexplained itching, also called pruritus, can happen in people with HL. If it affects only one area, it’s called “localized.” Itching can be severe and cause a painful burning sensation. It may happen more often after drinking alcohol or being exposed to heat.
Some people with HL feel pain in their lymph nodes after drinking alcohol. This reaction is rare but can be an early sign of the disease. The pain starts soon after drinking and can range from mild discomfort to severe aching.
Localized signs and symptoms can be caused by the effects of a tumor in a specific place in the body. Enlarged lymph nodes, other enlarged organs, or tumors can put pressure on nerves, blood vessels, and other organs, causing pain or other symptoms. Localized signs and symptoms of HL are commonly seen in the chest and abdomen.
Lymphoma in the chest can cause many symptoms including pain and pressure in the chest, coughing, shortness of breath, and difficulty breathing. Coughing and difficulty breathing can occur due to swollen lymph nodes irritating or putting pressure on the bronchus (windpipe) in the lungs or neck.
The abdomen, or belly, contains many lymphatic organs. In addition to the many lymph nodes throughout the abdomen, the spleen, liver, and intestines can all be affected by lymphoma. An enlarged spleen or liver can make you feel full after eating only a small amount of food. Enlarged organs and the accumulation of fluid in the abdomen, called ascites, can cause distention (swelling or bloating), leading to a loss of appetite, nausea, vomiting, and abdominal pain.
All of the signs and symptoms of lymphoma can also have other causes, including other cancers or diseases that aren’t serious. Regardless of the underlying cause, if you’re experiencing any of these symptoms, it can be a reason for concern. Talk to a healthcare provider if you have symptoms that don’t go away or become worse over time.
Having symptoms isn’t enough to diagnose HL. Further tests are needed to confirm the cause and find the best treatment.
Yes. About 80 percent of people with HL are completely cured — even those diagnosed at later stages. In younger individuals and those diagnosed early, the cure rate is nearly 90 percent. If you think you have symptoms, talk to a doctor and get tested early.
MyLymphomaTeam is the social network for people with lymphoma and their loved ones. On MyLymphomaTeam, more than 21,000 members come together to ask questions, give advice, and share their stories with others who understand life with Hodgkin lymphoma.
Are you or someone you care for living with Hodgkin lymphoma? What symptoms have you had? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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