Common Lymphoma Symptoms, Described by Real Patients

Lymphoma comes in many different forms, and can cause a wide variety of symptoms in patients prior to diagnosis.

Below are some of the first signs of both Hodgkin’s lymphoma and non-Hodgkin’s lymphoma that real patients experienced before they sought medical advice.

First signs and symptoms of lymphoma

• Lump or swelling in neck, throat, or jaw
• Fatigue
• Occasional dry coughing
• Shortness of breath / difficulty breathing
• Fever, night sweats and/or chills
• Itching (particularly in the legs)
• Loss of appetite
• Weight loss
• Chest pain
• Stomach / abdominal pain
• Body aches

In addition to the above more common lymphoma symptoms, some patients have also experienced the following: Difficulty swallowing, a bump on the sternum, swelling in the legs, bloating, a rash on neck and chest, and others

»MORE PATIENT STORIES: Hodgkin Lymphoma stories | Non-Hodgkin Lymphoma stories

How patients described their first signs of lymphoma

It’s common for pre-diagnosis lymphoma patients to experience a number of symptoms at the same time, rather than a single one. Many are interpreted at first as symptoms of a cold, flu, or general fatigue.

Read on for highlights from lymphoma patient stories of how they first experienced signs that something was wrong.

Lump or swelling in neck, throat, or jaw

Swelling of the lymph nodes is often the first thing lymphoma patients notice. Lymphoma can cause lymph nodes in the neck, throat, jaw, armpit, or groin to visibly swell. While most lymphadenopathy (swelling of the lymph nodes) is caused by infection, it can sometimes indicate cancer. Lymphoma patients interviewed by The Patient Story most commonly report lymph node swelling in the neck, throat, and jaw.

Most of the time, these lymph nodes are painless and have a “rubbery” texture. However, rapid swelling can cause painful irritation of the tissues around the lymph node, and texture can vary from person to person. It’s important to ask a doctor about any unusual lymph node swelling that you experience.

Your doctor may perform a blood test, ultrasound, or a fine needle aspiration biopsy in order to give you a diagnosis. It is common for doctors to prescribe a round of antibiotics in order to rule out infection before performing further tests.

One red flag to watch out for is swelling of the supraclavicular lymph nodes, which are located just above your collar bone. Swollen supraclavicular lymph nodes are more likely to indicate cancer than swollen nodes in other parts of the body. Some patients say that their lymph nodes grew slowly overtime, while some patients say that their lymph nodes grew seemingly overnight.

“I felt a lump in the back of my neck. I thought this was a muscle knot and kept trying to rub it out. It got bigger. I was told it was probably an infection that had caused a lymph node to enlarge and nothing to worry about. However, it didn’t go away. About three weeks later I met with another doctor, as I discovered another lump.”

– Tony D. | Read more →

“I noticed a growth on my neck. Usually, if there’s swelling from a viral infection, you see symmetrical swelling, so just having it on the right side only was a little alarming.”

– Charlie B. | Read more →

“I really didn’t have any symptoms except for the one lymph node on my right side that was just getting bigger and bigger as time went on. It just wasn’t going down. As soon as I started to feel other ones lower down my neck, it just didn’t seem right.”

– Danielle D. | Read more →

“I noticed I had swollen lymph nodes on the left side of my neck. My mom is a nurse practitioner, so I showed her when I was visiting one weekend. I asked if we could go get it checked out. I asked her what it could be, and she said I could have some type of infection or worst case scenario that it could be some kind of cancer.”

– Tylere P. | Read more →

“I thought I had slept weird. I was just feeling some discomfort in my neck. I never thought it would be cancerous. I told my parents I had this thing on my neck, and they said we should get it checked out.”

– Logan A. | Read more →

“When I got out of the shower in the evening, I noticed a lump in my throat that I did not see the day before. I pushed on it and it felt pretty hard, but it did not hurt. My heart sank a bit because I instinctively felt that something was very wrong. My first thought was thyroid cancer. I didn’t know what it was, but I knew it was not good.”

– Donna S.| Read more →

Fatigue

Many lymphoma patients experience cancer-related fatigue as one of their early symptoms. Unlike normal tiredness, fatigue related to lymphoma doesn’t just go away when you rest. Fatigue can range from feeling a bit worn-out to being so severe you have trouble completing even simple tasks. You might also have mental fog or personality changes. 

Cancer-related fatigue can have a few different causes, including anemia (low red blood cells), inflammation, and strain on the body from the cancer itself. If you’ve already been diagnosed and are experiencing fatigue, talk to your doctor to see if there is an underlying cause that medication could help, like depression or anxiety.

“I was feeling lethargic and sleepy for weeks, but attributed it to my most recent work schedule. For about a week, I would wake up with a swollen jaw and neck. As the day went on, the swelling would subside so I thought I was just ‘bloated.’ It wasn’t until I woke up one morning and had a very deep cough that came from a place I’d never experienced.”

– Stephanie C. | Read more →

“I started to notice symptoms of achiness and I was getting very tired, but at this point, my workload had picked up. I had taken a promotion. I was working extra hard. It was extra demanding, and on top of that, it’s the holiday season and we were going out. We had office parties. I had dinner parties. So I was tired. I kind of chalked all of this up to either I just have a lingering virus, because I would get a little achy in the afternoon, then I would have a good sleep, and then I’d wake up and I’d feel fine.”

– CC W. | Read more →

“I had been going to the doctor for severe fatigue for several years prior to diagnosis. We didn’t know what it was. Thoughts went through our heads that it was possibly chronic fatigue syndrome. Several doctors told me I needed to get more exercise, and that would solve the fatigue problem.”

– Lacey B. | Read more →

Coughing

Another commonly reported lymphoma symptom is coughing. Coughing occurs when swollen lymph nodes in the chest press on the trachea (windpipe). If you only have swollen lymph nodes in your chest, coughing may be the first sign of lymphoma. Talk to your doctor if you have an unusual cough that won’t go away.

“I started showing “signs” about two weeks prior to giving birth with just a bad cough and a little trouble breathing that I thought was caused by being pregnant.”

– Keyla S. | Read more →

“I had been coughing for the better part of a year, sometimes worse than others. That was really my only sign. I’d been active, I’d been living my life normally, fully. But I was coughing a lot. Then I was going to the health center at school or whatever was available and they would always just say, ‘Oh, maybe it’s allergies, maybe you’re fine healthwise.’”

– Stephanie O. | Read more →

“For several months I had shortness of breath and a dry cough. I dismissed these signs because I believed it was a cold or a flu.”

– Fabiola L. | Read more →

Shortness of breath / difficulty breathing

Like coughing, shortness of breath is a lymphoma symptom that is caused by lymph nodes in your chest swelling and pressing on your trachea. Shortness of breath might occur with or without coughing. It may make your chest feel tight or leave you winded after a flight of stairs. 

Some people report that shortness of breath/difficulty breathing is accompanied by pain, which can result from swollen lymph nodes pushing on muscle tissue.

“I really just couldn’t breathe. That was the only symptom I really had. I was going to the gym like 5 or 6 days out of the week…I took it a little easier, and it wasn’t getting any better. Then it got to the point where it was just sporadic. I would be driving in the car, and I’d feel like an elephant was sitting on my chest.”

– Madi J. | Read more →

“I had set an appointment to have some of my adenoid tissue removed as it was causing that blockage in my nose that was affecting my breathing. I had an incredible hard time breathing through my nose (near 90 to 100%) blockage which led me to seek the ear, nose, throat (ENT) doctor to take a look.”

– Helicon K. | Read more →

“All of a sudden it felt like there was a vacuum in my chest. It was hard to breathe, and it was cramping. I didn’t want to cause a fuss, so I pushed through it for the movie. I was drinking water and taking shallow breaths. From them on for about a week or so, I just struggled.”

– Kayla T. | Read more →

Fever, night sweats and/or chills

Night sweats are frequently reported by lymphoma patients as one of the symptoms that tipped them off that something was wrong. While lots of things might cause you to wake up a bit sweaty -like hot weather, new bedding, or even anxiety- night sweats associated with lymphoma keep coming back and often make you feel like you’ve dumped a bucket of water on your head.

Doctors aren’t completely sure what causes night sweats in lymphoma patients. Night sweats are a natural reaction to fever, which is another symptom of lymphoma. A low-grade fever that comes and goes over the course of several weeks is cause for concern. Chills, which tend to be associated with fever, are also reported by lymphoma patients.

“I had symptoms for probably more than a year before I found out what it was…I thought the night sweats were perimenopause. I had extreme itching to the point where I would bruise my legs…I had a constant, persistent cough as well. I thought it was allergies. I had an excuse for everything.”

– Katee P. | Read more →

“I was getting lots of fevers, inflammation and stuff like that. The initial symptoms were the weight loss and loss of appetite though.”

– Brianna B. | Read more →

Itching

Itching is a common symptom in many lymphoma patients, but is more commonly experienced by patients with Hodgkin’s Lymphoma. Itching from lymphoma is believed to be caused by chemicals called cytokines, which irritate nerve endings and cause itchy skin. Unlike eczema or allergic reactions, itching associated with lymphoma is often not accompanied by a rash. 

Itching associated with lymphoma can feel like it is occurring below your skin and can’t be satiated by scratching. It can be extremely distracting and usually isn’t helped by creams or medications. Itching from lymphoma tends to occur more frequently on the lower half of the body and often gets worse at night.

“My first symptoms were itchy skin and an enlarged lymph node. My belly itched, my arms itched, everything itched so much it motivated me to go to a dermatologist’s office. It was kind of unbearable and really distracted me at work.”

– Lauren C. | Read more →

“The first time I saw the doctor was a year ago and it was for the itching. I was only showing him my legs to see what was wrong. I was prescribed creams to try out but they didn’t work out. I saw the doctor a second time and we tried other creams and they didn’t work. [Then] I saw a dermatologist. She ended up referring me to an oncologists when I got some scans back because there was something showing up.”

– Jade B. | Read more →

More lymphoma symptoms stories

“My appetite waned and I started to lose weight, but didn’t take any action. Then the lymph nodes along my neck, throat, and clavicle area swelled up suddenly. “

– Arielle R. | Read more →

“I had noticed for a couple of months that I had this bump right on my sternum. That was it. It felt like a bone was popping out but nothing else of concern. I didn’t have any other symptoms. I was going to the gym a couple times a week, and I was living life normally.”

– Patrick M. | Read more →

“I had started having chest pain. It was early in the Fall of the year before my diagnosis the next January. I went to get it checked out, and they told me I had a pulled muscle. I still had the chest pain, so I went back in December. They said I had walking pneumonia. They didn’t really think anything of it. In January, it hurt to eat or drink anything, so I went to the ER. That’s when they found a mass.”

– Crystal Z. | Read more →

“I was in denial for a long time. I had been having trouble buttoning my pants for a while. I started wearing flowy clothes…someone asked me if I was pregnant. There was clearly something wrong, but I also had a hernia, so I just thought it was related to that…I was pretty low-energy for a while too. When I’d work out, I would get tired faster than usual. [One night] I had a really bad stomach ache, and I went to be at 6:30pm because I was just too tired. The pain became so intense over the course of the night, and my husband was asking if I wanted to go to the ER. I kept saying, “No, it’s just a hernia. That’s silly.” Finally, at about 1:30 in the morning, I wanted to go because I was in too much pain.”

– Rachel P. | Read more →

“I was about to go to bed. I was struck with this extreme, sudden lower back pain. It felt like someone was stabbing me in the back. It was this crazy pulsating pain. It radiated through my hips and down my legs. It was so scary because it went from 0 to 100. I tried to switch my position to see if that could fix it because I was so confused. Nothing helped. I was so shocked. I tried to stand up, and I couldn’t because the pain was so unbearable.”

– Lia S. | Read more →

What to do if you’re experiencing symptoms

If you or a loved one is experiencing any of the above signs, don’t panic. Many ailments other than cancer can cause similar symptoms, so you shouldn’t immediately assume the worst. However, it’s also best not to wait if you truly feel something is wrong with your body. Make an appointment with your doctor to discuss your symptoms and the right course of action for your health.

»MORE: Being your own health advocate