Learning About Hodgkin Lymphoma
- Libby Sunter was an 18-year-old musical theatre student at Leeds University when her headaches and extreme fatigue turned out to be symptoms of stage 4 Hodgkins lymphoma. Now, 20, she’s in remission and hoping her cancer journey will inspire others to avoid misdiagnoses and seek answers sooner than later.
- Lymphoma is a cancer of the immune system. There are more than 40 different types of lymphoma, and Hodgkin lymphoma and Non-Hodgkin lymphoma are two sub-categories with the latter being more common.
- The type of white blood cells linked to the disease determines the distinction. If doctors are unable to detect the Reed-Sternberg cell a giant cell derived from B lymphocytes then it is categorized as Non-Hodgkin lymphoma.
- According to the National Cancer Institute, Hodgkin Lymphoma “most frequently presents in lymph node groups above the diaphragm and/or in mediastinal lymph nodes.”
- Advocating for your own health can lead to better patient outcomes. When you suspect your symptoms are not fully considered or outright dismissed, consider seeing a different doctor.
- Getting multiple opinions from different doctors can help lead you to an accurate diagnosis in case the first doctor overlooked something.
Libby Sunter was enrolled in an intense musical theatre program at Leeds University when she began experiencing fatigue, headaches, and blackouts—something she attributed to stress from school. However, the then 18-year-old soon learned her unusual symptoms were due to stage 4 Hodgkins lymphoma. Sunter, who is now 20 and in remission from the blood cancer, is sharing her story to inspire others not to ignore symptoms and seek medical advice when needed.
During a recent interview with the
Liverpool Echo , Sunter recounted feeling extremely tired, in addition to experiencing headaches and blackouts during her studies, which consisted of hours-long dance practices. And she suffered with the symptoms until a seizure led her to the hospital, where she was informed she had anemia, a condition when one's blood doesn't produce enough normal red blood cells. She was told she had anemia after undergoing blood tests, various scans, and a spinal tap to rule out meningitis. Revealing what ultimately led to her diagnosis in April 2022, Sunter said, "I was really, really ill at home. I wasn't eating. I couldn't get out of bed. And then I had a really high temp and went straight back to A&E [hospital. "By the time I went back into A&E I couldn't even stand by myself. My mum and dad were holding me up. They got me straight through onto a bed and went over all the notes from Leeds, and within a matter of days they were discussing the possibility of lymphoma. "I was in for about 10 or 11 days, and within a week I had a biopsy and was given the diagnosis not long after," said Sunter, who was just 18 years old when she was diagnosed with a type of cancer of the immune system."
Sunter explained further, "I think the biggest shock was, I thought I was very healthy. It was so unexpected. Even the symptoms I was having I completely brushed off and didn't even think they could be linked to anything as serious as what it was. "I was just in shock for so long and I didn't know how to process it. I thought 'surely not me. There's no way this is happening.' Because it was stage 4, it was much more terrifying because your mind goes to the worst outcome. It was horrendous really." According to
Mirror UK , Sunter also admitted to thinking prior to her diagnosis that she was "was just pushing myself too far, and that it would get easier once I got used to how demanding the course was." After undergoing seven months of chemotherapy at the Clatterbridge Cancer Center in the UK, Sunter was declared to be "cancer-free" and in remission in November 2022. During her recent interview, Sunter, who admitted that losing her hair wasn't an easy part of her cancer journey, added, "I'm still completely in remission. I had a scan recently as a check-up and had a full review from the doctors. I'll be kept on the system for three years, so after the three years the likelihood of relapse is tiny." She also credits Clatterbridge Cancer Center for being a major support system throughout her cancer journey. "The support that I received from everyone in my life, but specifically from Clatterbridge, was incredible. It’s such a beautiful hospital. They just made me feel so at ease and so weirdly, really calm about everything that I was going through. The nurses were just angels. They became like family. There was always someone there to talk to."
To
commemorate being in remission , Sunter took to social media to share a celebratory Instagram post, writing, "It’s often in the darkest skies that we see the brightest stars. To say that these past 6 months have been tough is a huge understatement, but I have not gone a day without laughter and love… and for that I am so grateful. "I have so much love for every single beautiful person in my life and I am so proud of the person that I have become. I will never stop smiling no matter what life throws at me…here’s to the rainbow after the storm."
Expert Support Resources For Anyone Battling Cancer
Sunter has also taken to her
TikTok page to help inspire others to prevent misdiagnoses and get the answers they need, as doctors initially thought her symptoms were due to "possible meningitis" or "sepsis." She as explained how her cancer was found in four places, one being on her shoulder, in her chest, and by her spleen-area, and treated with 12 rounds of chemo, once every two weeks. https://www.tiktok.com/@libb_sunterx/video/7108000736989990150?lang=en
Learning About Hodgkin Lymphoma
Lymphoma is a cancer of the immune system. There are more than 40 different types of lymphoma, and Hodgkin lymphoma and Non-Hodgkin lymphoma are two sub-categories with the latter being more common. The type of white blood cells linked to the disease determines the distinction. If doctors are unable to detect the Reed-Sternberg cell a giant cell derived from B lymphocytes then it is categorized as Non-Hodgkin lymphoma. According to the
National Cancer Institute , Hodgkin Lymphoma “most frequently presents in lymph node groups above the diaphragm and/or in mediastinal lymph nodes.”
Lymphoma Biopsy: What to Expect In a previous interview,
Dr. Elise Chong , a medical oncologist at Penn Medicine, explained that Hodgkin lymphoma is most often seen in younger adults. And although less common, it is generally easier to cure than Non-Hodgkin lymphoma. Dr. Chong also said lymphoma symptoms can be difficult to detect. “The symptoms of lymphoma, especially if you have a low-grade lymphoma, often are no symptoms. People say, but I feel completely fine, and that’s very normal,” she explains.
Finding Lymphoma Early: Do you Know the Symptoms and Risks? What Are Your Risks?
“The patients who are diagnosed with lymphoma early, typically it’s luck,” Dr. Chong says. They may have had a symptom that made their doctor check them, or the cancer showed up on a scan or blood test that was done for another reason. Until an effective screening test does become available, you can increase your odds of finding lymphoma early by knowing whether you’re at risk, and staying alert for symptoms. You might be at higher risk for this cancer if you:
- Have been infected with the HIV or Epstein-Barr virus
- Had an organ transplant
- Have a family history of lymphoma
- Have been treated with radiation or chemotherapy drugs for cancer in the past
- Have an autoimmune disease
Let your doctor know about these risks, so he or she can keep a close eye on you. You may need more frequent checkups and tests. Also watch out for lymphoma symptoms. The most common ones are:
- Swollen glands in your neck, armpit, or groin
- Fever
- Chills
- Night sweats
- Weight loss without trying
- Feeling tired
- Swelling in your belly
RELATED: 7 Sneaky Symptoms of Hodgkin Lymphoma: Doctor Told One Teen Her Itchy Rash — Later Diagnosed at Stage 4 — Was ‘Nothing to Worry About’ Many different conditions, including infections, cause these same symptoms. So don’t panic if you have them. It’s most likely something more benign, but still worth getting checked out. It’s also a good idea to see your doctor for any unusual symptoms, even if they’re not on this list.
WATCH: Fertility and cancer. Advocating for Your Health
Patients advocating for their health can lead to better patient outcomes. This is especially important when you find your doctor has misdiagnosed your symptoms.
WATCH: Advocating for your health. A component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions.
Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.
WATCH: The value of multiple opinions. "If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to the latest of information is important," Dr. Rosenberg said.
Contributing: SurvivorNet Staff 
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