Understanding Lymphoma
- Wisconsin mom Courtney Liniewski, 35, is sharing how a second opinion at Mayo Clinic nearly four years after her lymphoma diagnosis revealed she had been misdiagnosed, though she remains in remission after treatment.
- Liniewski was initially diagnosed with grade 3B follicular lymphoma bearing rare “triple-hit” MYC/BCL2/BCL6 rearrangements, believed to be one aggressive lymphoma.
- However, this year, after Mayo Clinic re-reviewed her diagnosis (prompted by an unrelated arm lump), they discovered the original pathology was misclassified—she actually had two separate lymphomas, both now in remission but with follicular lymphoma remaining incurable and relapse risk elevated. Her correct diagnosis is a high-grade B-cell lymphoma with MYC and BCL2 gene rearrangements, and grade 1–2 follicular lymphoma.
- Follicular lymphoma is a type of non-Hodgkin lymphoma. It is a slow-growing blood cancer that is considered incurable — however, because it grows so slowly, patients often do not need treatment right away or can go long stretches without getting additional treatment.
- If you live in the United States and are diagnosed with non-Hodgkin lymphoma, there’s a good chance it’s the B-cell variety, like Liniewski’s case. About 85% of all lymphomas diagnosed in North America are B-cell lymphomas.
- B cells make proteins called antibodies that protect your body against bacteria, viruses, and other germs. Germs have a protein called an antigen on their surface, to which the antibody attaches. That signals your immune system to attack the invading organism.
- If you have a cancer screening coming up or have recently had one, you may have questions you want answered. SurvivorNet’s proprietary AI tool “My Health Questions” is designed specifically for patients and caregivers.
Unfortunately, being misdiagnosed is not something Liniewski is unfamiliar with. SurvivorNet previously covered Liniewski’s story on how she was dismissed as having migraines and anxiety before her initial diagnosis of Grade 3B Follicular Lymphoma, a slow-growing blood cancer and rare type of non-Hodgkin lymphoma.
Read More- High-grade B-cell lymphoma with MYC and BCL2 gene rearrangements, which Dr. Michael Jain, a physician at Moffitt Cancer Center in Tampa, Florida, previously explained to SurvivorNet is called a “double-hit lymphoma,” which “occurs in about 5% to 10% of patients.”
- Grade 1–2 follicular lymphoma— a separate, lower-grade lymphoma. “Follicular lymphoma is not considered curable, but many patients live with this disease and go on to die of something else completely,” Dr. Jakub Svoboda, a hematology specialist at Penn Medicine, told SurvivorNet in an earlier interview. In fact, even when follicular lymphoma is diagnosed at an advanced stage, the average survival is greater than twenty years.
Shocked to discover that she had been treated for the wrong type of cancer, despite believing she had fully understood her diagnosis for several years, Liniewski has decided to share her story as a reminder of the importance of advocating for yourself and pushing for answers when something about your health doesn’t feel right.
@cancercourtney 📌 Confused? Honestly, I get it. Here’s a brief overview. #lymphoma #misdiagnosed #follicularlymphoma
The lymphoma she was first diagnosed with was grade 3B follicular lymphoma with “triple-hit” features — meaning three genes, MYC, BCL2, each carried a rearrangement that helped drive the cancer’s growth.
Offering insight into what led to her corrected diagnosis, Liniewski explained to SurvivorNet, “On March 6, I had started to grow this lump on my arm, out of the blue, randomly. And nobody could figure out what it was.
“So being a lymphoma patient, growing a random lump is terrifying … and I had seen my oncologist and had an ultrasound that came back normal. Then I had a CT scan, but it was only of my neck, chest, abdomen, pelvis, and it didn’t scan my arm. And that came back normal, but it didn’t really address my arm.”
She admitted that since her symptoms continued to worsen, and the questionable area on her arm “was getting bigger, weaker and numb,” along with other “debilitating symptoms,” she decided to push for answers.
@cancercourtney I have Grade 3b Follicular Lymphoma with triple hit lymphoma. I had a new palpable lump appear randomly nine days ago. I went for an ultrasound that found a lump, but results were inconclusive. #lymphoma #follicularlymphoma #lump #ultrasound
Despite an X-ray and ultrasound at an urgent care—both found to be normal—her symptoms persisted. Her primary care doctor referred her to an orthopedic specialist, where an MRI of her elbow also came back clear. But an MRI of her humerus revealed something unusual.
“There was something in my humerus, but they didn’t really know what it was,” she said. “They thought maybe it was pressing on my elbow and causing some swelling.”
Liniewski continued, “Nobody could tell me what was happening … and I was getting worried because now it’s been a couple of months and my symptoms are progressing. And the way that my cancer spread so quickly the first time, I just felt like I couldn’t wait. So I went to Mayo Clinic.”
She ended up getting an appointment soon after she called Mayo Clinic.
“I was really kind of nervous about the urgency of how quickly they would see me. So, I went and got to meet with an actual lymphoma specialist,” explained Liniewski, who noted she was happy wit her oncologist, but acknowledged that he was not a lymphoma specialist.
Liniewski said Mayo Clinic ultimately re-reviewed her original pathology report as part of her consultation, leading to her new diagnosis.
When asked whether her treatment plan changed, Liniewski, who has been in remission for four years, said it was “just a stroke of luck that I received treatment that worked.”
Expert Lymphoma Resources
- Follicular Lymphoma: Understanding Your Treatment Options & Why There’s No Single Path
- All About Follicular Lymphoma: A Common Type of Non-Hodgkin Lymphoma
- Bispecific Antibodies For Follicular Lymphoma: Increased Use And The Possibility of A Cure
- Facing Follicular Lymphoma: A Guide To Understanding, Treating & Living Well With A Slow-Growing Blood Cancer
- Treatment Options for Follicular Lymphoma
- Watchful Waiting for Follicular Lymphoma: Here’s What it Means
- B-Cell Lymphoma: What’s Your Type?
- B-Cell Lymphoma: What Happens if Chemo is Not Working?
“Basically from what the lymphoma specialist told me, that the disease I have is actually more severe than what they originally told me and they undertreated me technically. But by stroke of luck, I went into remission with what I received and it helped take out or put into remission both of my cancers. And typically with what I do have, they would treat you with a much more intensive chemotherapy regimen,” she said.
Liniewski was treated with R-CHOP, one of the most effective drug regimens available for aggressive B-cell lymphoma. She underwent six cycles as an outpatient, with no maintenance therapy.
“R-CHOP has been a standard treatment regimen for aggressive non-Hodgkin lymphomas of the B-cell subtype for many years,” Dr. Adrienne Phillips, medical oncologist at Weill Cornell Medicine, previously told SurvivorNet.
“There are clinical trials looking to improve upon that standard by adding or removing medications to improve outcomes or minimize toxicity, but R-CHOP is still the standard of care for aggressive B-cell lymphomas.”
R-CHOP destroys the target tumor DNA while simultaneously reducing inflammation.
Here’s how the acronym breaks down:
- R: Rituximab (Rituxan) is a monoclonal antibody that attaches to a specific protein called CD20, which sits on the surface of B cells. It targets the cancerous cells and destroys them.
- C: Cyclophosphamide is a type of chemotherapy drug
- D: Doxorubicin hydrochloride (hydroxydaunomycin) is a type of chemotherapy drug
- V: Vincristine sulfate (Oncovin) is a type of chemotherapy drug
- P: Prednisone is a steroid, which lowers inflammation
Referring to when people tell her she should be grateful that she’s now in remission, despite having been misdiagnosed and treated for the wrong type of cancer, she added, “I’m upset for so many other people who don’t get the opportunity to be successful with a stroke of luck. Because it worries me about people that don’t get the opportunity four years later to have a second chance. And that scares me.”
She continued, “I feel like I have spent so long learning to accept a part of me has been this cancer. And I have done everything that I can to learn about it because the cancer that they told me I had is a super ultra rare thing.
“I felt like my entire world was flipped upside down because I went looking for help on my arm and I left with no answers and a completely different cancer diagnosis, and that wasn’t even on the table for me. I was shocked.”
“Liniewski strives to continue sharing her story to help others find the courage to seek second opinions, so she frequently posts to TikTok about her lymphoma journey.
In a recent video, she explained that her high-grade B-cell and follicular lymphomas are currently in remission with no active disease. Still, she remains at heightened risk of relapse and is being closely monitored, since doctors can’t predict when — or in what form — the cancer might return.
As for why she didn’t get a second opinion four years ago, Liniewski said it was because she needed to start treatment as soon as possible.
“I didn’t have a choice because I had to just go with what they told me, but I think being able to get that second opinion, just having somebody look over to double check is good for peace of mind.”
@cancercourtney I wish I could go back to me four years ago and give myself the biggest hug and tell her we made it. #cancersurvivor #cancerfree #cancertok
Better Understanding Non-Hodgkin Lymphoma
“Non-Hodgkin lymphoma is a big category,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, previously told SurvivorNet.
All non-Hodgkin lymphomas begin in white blood cells known as lymphocytes, which are part of your body’s immune system. From there, doctors separate these cancers into types depending on the specific kind of lymphocytes they grow from, B-cells or T-cells.
WATCH: The type of lymphoma you have matters.
Knowing which of these you have can help steer you to the most appropriate treatment.
One way doctors divide up these cancers is based on how fast they’re likely to grow and spread. “The two main classifications I think of in terms of non-Hodgkin lymphoma are lymphomas that are more indolent and those that are more aggressive because those are treated very differently,” Dr. Jennifer Crombie, medical oncologist at Dana-Farber Cancer Institute, previously told SurvivorNet.
Once you’ve been diagnosed with non-Hodgkin lymphoma, the next question your doctor will want to answer is whether you have B-cell or T-cell lymphoma. That answer is important because it will help determine your treatment.
B-cells and T-cells are two kinds of lymphocytes. They’re both infection-fighting cells, but they work in different ways.
About 85% of non-Hodgkin lymphomas affect B cells. These cells produce antibodies, proteins that react to foreign substances like viruses or bacteria in your body. The antibodies attach to another protein on the surface of the invading cells, called an antigen, to target and destroy them.
Types of B-cell lymphoma include:
- Diffuse large B-cell lymphoma
- Follicular lymphoma
- Small lymphocytic lymphoma (SLL)/chronic lymphocytic leukemia (CLL)
- Mantle cell lymphoma
- Marginal zone lymphomas
- Burkitt lymphoma
- T-cell lymphomas make up only 15% of non-Hodgkin lymphomas. Unlike B-cells,
- T-cells directly destroy bacteria and other invaders.
Types of T-cell lymphoma include:
- T-lymphoblastic lymphoma/leukemia
- Peripheral T-cell lymphomas
- Cutaneous T-cell lymphoma
In most cases, doctors cannot pinpoint exactly why someone develops lymphoma. However, there are some known risk factors:
- Age: It’s more common in older adults, though it can occur at any age.
- Immune system problems: People with weakened immune systems — from HIV, autoimmune diseases, or certain medications — have a higher risk.
- Family history or previous cancers: These can slightly increase risk, though lymphoma isn’t typically inherited.
- Infections: Rarely, chronic infections such as H. pylori or hepatitis C may play a role.
Follicular Lymphoma: Understanding Your Treatment Options & Why There’s No Single Path
If you’ve been diagnosed with follicular lymphoma, like Liniewski, you may expect to start treatment right away. However, many patients are told they do not need to begin treatment yet, and some may never need to.
Due to the uncertain way the disease can behave, there is no one size fits all approach to treatment.
“It’s treatable, but historically has not been curable, and many patients can live with it for years, sometimes decades,” Dr. Sameh Gaballa, a medical oncologist at Moffitt Cancer Center, told SurvivorNet in an earlier interview.
Many patients have few or no symptoms at diagnosis, may not need treatment for long periods, and can live normal life expectancies.
About 80% of patients have life expectancy similar to the general population, Dr. Gaballa said.
Treatment v. ‘Watchful Waiting’
After a follicular lymphoma diagnosis, doctors may recommend watchful waiting, or closely monitoring the disease instead of treating it.
“Studies showed survival was the same whether patients were treated early or observed,” Dr. Gaballa explained, adding that some patients, about 30%, can continue this watchful waiting approach and never need treatment.
Treatment typically begins only when the disease begins to cause symptoms or appears to be growing.
When treatment is needed, the approach will vary from patient to patient. While there is no clearly defined path, there have been a lot of recent developments.
“In the last five years we’ve had a tremendous amount of progress where there’s a lot of options, including targeted treatments, immunotherapies, advanced immunotherapies, cellular therapies, antibody drug conjugates, and those are reshaping how we’re treating these diseases,” Dr. Gaballa explained.
Options For Relapse
When cancer returns after treatment, or relapses, doctors are moving more towards targeted and immune-based therapies instead of chemotherapy in many cases, Dr. Gaballa added.
Two of the most important newer treatments for relapse include:
- CAR T-cell therapy: A one-time, intensive treatment that requires preparation, time off, and close monitoring, but can be highly effective
- Bispecific antibodies: A less intensive and more flexible option that is given over time, often for several months
At this time, there is no clear “best” choice and no fixed order for using these treatment options.
“We do not have any trials comparing CAR T-cell therapy to bispecific antibodies,” Dr. Gaballa said.
Learning About Follicular Lymphoma
For many patients, the decision comes down to how these treatments fit into their lives, as well as timing. These treatments are often used at different points, and many patients may receive both over the course of their care.
“There’s not going to be a one-size-fits-all,” Dr. Gaballa said.
Patient preferences matter as well. Dr. Gaballa added, “In aggressive lymphomas, we focus mostly on efficacy. But in follicular lymphoma…we look at safety, convenience, and what works for the patient’s life.
Why Self-Advocacy in Healthcare Can Be Life-Saving
When patients actively advocate for their health, it can lead to earlier diagnoses, broader treatment options, and ultimately better outcomes—especially when initial symptoms are overlooked or dismissed.
Part of this advocacy means not settling for a single medical opinion. Persistence matters: revisiting your doctor, pushing for answers, and seeking additional perspectives from other healthcare providers can be crucial steps in the journey.
WATCH: The value of getting a second opinion
Dr. Steven Rosenberg, Chief of Surgery at the National Cancer Institute, underscored this point in a conversation with SurvivorNet:
“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 date with the latest information is important,” Dr. Rosenberg said.
His words are a powerful reminder that having the right medical team can make all the difference—and that begins with being your own strongest advocate.
Getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. “So there may be a conflict of interest if you present to a surgeon who is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer
- You have a rare type of cancer
- There are several ways to treat your cancer
- You feel like your doctor isn’t listening to you, or isn’t giving you sound advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
- Your insurance company wants you to get another medical opinion
- Your cancer isn’t improving on your current treatment
Some health insurance companies will cover the cost of a second opinion. Still, it’s a good idea to find out if yours does before you visit a new doctor, as some insurance companies have stipulations on the extent of coverage they will provide.
Keep in mind that you don’t need to stop at a second opinion. Provided that you have the time and financial resources, you may want to consider getting a third or a fourth opinion. Just don’t get so many opinions that your treatment options overwhelm you.
With each new doctor you visit, bring a copy of your:
- Pathology report from your biopsy or surgery
- Surgical report
- Imaging tests
- The treatment plan that your current doctor recommended
WATCH: The Importance Of Getting A Second Opinion: Tara Lessard Shares Her Cancer Story.
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 a cancer screening coming up or have recently had one, you may have questions you want answered. SurvivorNet’s proprietary AI tool “My Health Questions” is designed specifically for patients and caregivers.
Contributing: SurvivorNet Staff
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