Understanding Lymphoma
- Twin sisters Emma and Sofia Ego were diagnosed with Hodgkin lymphoma five years apart, but after beating cancer, they’re now heading to the University of Michigan.
- Lymphoma is a cancer of the immune system that affects infection-fighting cells called lymphocytes. And there are more than 40 different types of lymphoma. Non-Hodgkin lymphoma and Hodgkin lymphoma are the two most common types.
- When it comes to treating Hodgkin lymphoma, your doctor will tailor your treatment to the stage of your cancer, as well as other factors, such as how aggressive it is. Chemotherapy is generally part of the treatment at every stage. But in the early stages, radiation may be added, because stage I and II lymphomas tend to respond well to radiation.
- Treatment depends on the type of lymphoma you have and how advanced it is. Treatment options typically include chemotherapy, radiation, and a bone marrow transplant.
“You don’t have to like tough it out; you don’t have to pretend that everything’s perfect. … You’re being tough enough. You can feel sad, you can cry,” the Ego twins told Click On Detroit in a recent interview.
Read MoreHowever, Emma was later diagnosed with the same disease in 2025, something she couldn’t believe and thought “what are the odds?”
Recounting how she found a lump, she told the news outlet, “I was like lying on my bed, and I like moved so my elbows were underneath me, and I was, like, oh, ouch.”
After seeing Dr. Kate Gowans, an oncologist at Corewell Health who treated treated her sister and then herself, she received the exact same diagnosis, which Dr. Gowans tells Click on Detroit is “definitely unusually in all of my years of doing this.”
Genetic testing was done on the family, but doctors still haven’t been able to pinpoint why both girls developed Hodgkin lymphoma.
Expert Resources on Lymphomas
- ‘We’ll Help You Through It’: Dr. Elizabeth Brem on the Power of Open Communication in Lymphoma Care
- Could Your Lymphoma Come Back? What Happens When You Relapse
- Exciting New Options Are Available for Lymphoma Recurrence
- Finding Lymphoma Early: Do you Know the Symptoms and Risks?
- How Do You Know if Your Lymphoma Has Changed Into an Aggressive Form?
Thankfully, the twins had each other through their cancer journeys and their beloved parents Debbie and Alan.
Debbie, the sisters’ mother, said the family experienced a complicated mix of emotions when Emma was diagnosed, including an unexpected sense of relief that they knew how to navigate Hodgkin lymphoma after Sofia’s earlier battle.
She explained, “Weirdly, you find yourself in a position when you when you receive your diagnosis that we were almost grateful it was something that we understood because it’s so shocking when you receive the first moment that you realize your child is going to face this.”
Debbie said her daughters took turns lifting each other up throughout their illnesses.
Both sisters went through the identical regimen of eight rounds of chemotherapy over four months, but each leaned on something different to get through it. For Emma, it was schoolwork, theater, and making jewelry, while Sofia found comfort in music.
Now starting their freshman year of college, Sofia hopes to study genetics, while Emma aspires to pursue anthropology.
Monitoring Hodgkin Lymphoma
It’s important to understand that once you’re done with treatment for Hodgkin Lymphoma, it doesn’t mean that your cancer-related care is finished, according to The American Society of Clinical Oncology.
“Care for people diagnosed with lymphoma does not end when active treatment has finished,” says The American Society of Clinical Oncologists. “Your health care team will continue to check that the cancer has not come back, manage any side effects and late effects of treatment, and monitor your overall health. This is called follow-up care.”
Follow-up care generally means talking with your doctor, having a physical examination, getting blood tests, and sometimes scans.
“At most cancer centers, follow-up visits are scheduled every 3 to 4 months for the first 1 to 2 years after treatment is completed, which is when the risk of recurrence is highest,” the ASCO website states. “After that, the time between visits increases over time. Later visits may only be 2 to 3 times per year until 5 years have passed. After 4 to 5 years, patients should discuss options for long-term surveillance with the health care team.”
Long-term surveillance can include going to a survivorship clinic in a cancer center, receiving ongoing care from your cancer care team, or transferring to a long-term plan with a primary care provider.
Quality of life is also important to consider in follow-up care. According to ASCO, Hodgkin lymphoma survivors, in particular, are encouraged to look out for symptoms of depression and to talk with their doctor immediately if they notice any signs. Always remember, your emotional health is just as important as your physical health.
Overall, every person’s cancer journey looks different. Your long-term care can differ greatly from someone with the same disease, so it’s important to talk with your doctor about what your individual plan should look like.
What is Hodgkin Lymphoma?
Lymphomas are a type of blood cancer that begin in lymphocytes, a type of white blood cell. They are separated into two categories: Hodgkin Lymphoma and non-Hodgkin Lymphoma, with non-Hodgkin Lymphoma being the more common type.
Hodgkin Lymphoma usually starts in a part of the lymph system called B cells, which make proteins called antibodies that help protect the body from germs. With those cells compromised, it’s more difficult to protect your body from germs, which may increase the risk of infections.
The disease is predominantly diagnosed in people between the ages of 20 and 40, and over 55. Symptoms include severe itching, swelling in lymph nodes in your neck, night sweats, fever, unexplained weight loss, daily fatigue, decreased tolerance to alcohol, or experiencing pain in lymph nodes after consuming alcohol.
RELATED: Understanding Blood Cancers
Although lymphoma is relatively rare, advances in research and treatment mean many patients have a good chance of full recovery.
There are also more than 40 different types of lymphoma.
“Lymphoma is split up into a number of different categories,” Dr. Elise Chong, a medical oncologist at Penn Medicine, tells SurvivorNet.
“The first distinguishing breakpoint, if you will, is non-Hodgkin lymphoma versus Hodgkin lymphoma,” she adds, “and those sound like two different categories. But non-Hodgkin lymphoma comprises the majority of lymphoma, and Hodgkin lymphoma is a single specific type of lymphoma.”
What Kind of Lymphoma Do You Have? Why Your Type Matters
Hodgkin lymphoma has giant cells called Reed-Sternberg cells. The presence of these cells, which can be seen under a microscope, will help your doctor determine which of the two lymphoma types you have.
Another difference is that non-Hodgkin lymphoma is more likely to spread randomly and be found in different groups of lymph nodes in the body, while Hodgkin lymphoma is more likely to grow uniformly from one group of lymph nodes directly to another.
These two types of lymphoma behave, spread, and respond to treatment differently, so it’s important to know which type you have.
Your doctor will tailor your treatment to the stage of your cancer, as well as other factors, such as how aggressive it is. Chemotherapy is generally part of the treatment at every stage. But in the early stages, doctors may add radiation because stage I and II lymphomas tend to respond well to it.
Dr. Chong also told SurvivorNet, “The one thing that I always reassure people about when they are diagnosed with advanced stage lymphoma is that, unlike other cancers, where advanced stage is a death sentence, that’s certainly not the case for lymphoma.”
Spotting the Symptoms
The first lymphoma symptoms can be so subtle that you might not even notice them. You may not discover a problem until you visit your doctor for a check-up.
“People say, ‘But I feel completely fine,’ and that’s very normal,” Dr. Chong explains. If a lump is found, often “it’s only because either someone palpated a lymph node and felt some swelling in their neck or in their groin or under their arm.”
If you are at risk for this cancer because you had cancer or an organ transplant in the past, you have an autoimmune disease, or you have an infection such as HIV or Epstein-Barr, it may be worth watching out for symptoms like these:
- Swollen lymph nodes in your neck, armpits, or groin
- Weight loss
- Tiredness
- Fevers
- Swollen belly
But keep in mind that these are more likely to be symptoms of something far less serious, such as a run-of-the-mill infection.
There are also a group of symptoms doctors refer to as “B symptoms.” Those include a fever, night sweats, or weight loss.
“If people are having any of these symptoms, it’s really important that they tell their physician early so that the proper testing can be done,” Dr. Chong says.
Finding Lymphoma With Imaging Tests
Sometimes the first sign of lymphoma appears not as a symptom, but as a clue on an imaging test that’s done for another reason. “I have patients who’ve gotten into car accidents and said, ‘I had a scan of my body and they saw these lymph nodes,’ and that’s how initially the lymphoma was found,” says Dr. Chong.
If your symptoms appear first, your doctor might send you for imaging. An X-ray or computed tomography (CT) scan can identify the cause.
RELATED: Age, Race, and Exposures Might All Factor Into Lymphoma Risk
The only way to confirm whether you have lymphoma is with a biopsy. Your doctor will remove a piece of tissue from a lymph node, or the entire node. Then, a specially trained doctor called a pathologist examines the sample in a laboratory to see whether it contains lymphoma cells, and if so, which type of lymphoma they are.
A biopsy can either put your mind at ease by letting you know that you don’t have cancer, or give you a sense of direction by giving your doctor a launching-off point to plan your treatment. If you do have lymphoma, you can get at least some comfort from knowing that there are a number of good treatments to help manage it, even if you’re diagnosed at an advanced stage.
Questions for Your Doctor
If you are dealing with a lymphoma diagnosis, it’s important to ask your doctor a series of questions so you will have an idea of what your next steps will look like. To help you during this difficult time, SurvivorNet has some questions to kickstart your conversation with your physician.
- What type of lymphoma do I have?
- What does my pathology report say about my diagnosis?
- Should I get a second opinion before I explore possible treatment options?
- Based on my diagnosis, what do you anticipate my treatment path?
- What common side effects should I expect when I begin treatment?
- Will I be able to continue working and performing normal daily activities during treatment?
- Where can I get help working with the insurance company regarding treatment costs?
- Who do you recommend I get mental health help from during my treatment?
If you have questions you want answered, SurvivorNet’s proprietary AI tool “My Health Questions” is designed specifically for patients and caregivers.
WATCH: How One Cancer Survivor and Her Sister Used “My Health Questions” to Navigate Care
Contributing: SurvivorNet Staff
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