Wisconsin Woman, 32, Misdiagnosed With ‘Migraines & Anxiety,’ It Was Actually a Rare Type Of Non-Hodgkin Lymphoma— Understanding Follicular Lymphoma: ‘My Passion Is To Spread Awareness About it

The 34-year-old lymphoma advocate explained, “My ‘cancer-versary’ is in July, marking three years since diagnosis and remission. I’m currently on ‘watch and wait,’ and I’m monitored every three months with labs and scans. My cancer has a very high recurrence rate, so early detection is critical.

“If it returns, treatment will likely involve a stem cell transplant or CAR-T therapy.”

@cancercourtney

This video is long— but it’s something I feel passionate about. Self-advocacy can be so daunting and draining. But it just might cost you your life in the end. It’s hard to be told “you’re fine” when you know you’re not.. but you just have to keep pushing for the answers. Always. #cancertok #cancersurvivor #bloodcancer #lymphoma #nonhodgkinslymphoma #follicularlymphoma #selfadvocacy

♬ Boundless Worship – Josué Novais Piano Worship

Liniewski, who suffered from fatigue, night sweats, and weight loss around the time of her diagnosis, said, “I do believe I had a complex migraine at that time, and I’ve had two total now. But I also think I was under-diagnosed.

“Given my history of anxiety and migraines, it felt like they stopped looking after the first assumption. It was also during COVID, and I was alone, scared, unsure, and not yet confident in my ability to advocate for myself.”

She continued, “Plus, I had a terrible reaction to the medication they gave me in the ER, which added to the trauma. Now, I believe that migraine was actually a neurological warning sign—a red flag from my immune system that something deeper was wrong.”

“After my cancer diagnosis, I knew the initial assessment had missed everything. It felt like I had been dismissed too quickly and too easily,” Liniewski added, further warning, “If something feels wrong, keep pushing. Get second, third, even fourth opinions.”

Liniewski also advised anyone who comes across her story, “Don’t let fear or stigma silence you, especially as a woman with anxiety. We’re being diagnosed with cancer at younger and younger ages, and I don’t think the healthcare system has fully caught up.

“Use your voice. Be loud. You might save your own life.”

@cancercourtney

🎗️ It’s World Blood Cancer Day. I didn’t even know what lymphoma was when I was diagnosed. Now I live with it, fear its return, and fight like hell to stay here. This isn’t rare. It’s under-detected. And it doesn’t always come with warning signs. Know the symptoms. Trust your gut. Advocate like your life depends on it—because it might. #WorldBloodCancerDay #LymphomaAwareness #CancerSurvivor #BloodCancerAwareness

♬ original sound – Cancer Courtney 🎗️

Back in January 2022, Liniewski noticed she had facial drooping after feeling a strong pain in her head the night prior. A trip to the emergency room, blood work, and brain scans, showed nothing wrong and she was sent home.

It wasn’t until she began having chest pain, fatigue, ‘sever back pain,’ weight loss, night sweats, and breathlessness that she grew more concerned.

It wasn’t a month later that she woke up with a lump on her neck on a trip to Mexico, which prompted her to get checked, learning the mass was 4.1cm.

Liniewski also informed her followers on TikTok to get checked when something feels off, explaining “This video is long— but it’s something I feel passionate about. Self-advocacy can be so daunting and draining.

“But it just might cost you your life in the end. It’s hard to be told ‘you’re fine’ when you know you’re not.. but you just have to keep pushing for the answers. Always.”

What Is Follicular Lymphoma?

Follicular lymphoma can feel like a baffling diagnosis. It is technically a cancer, but one that often moves at a crawl. Many people live for decades with few or no symptoms, and modern medicine keeps adding new tools that make those decades even smoother.

Even if you are diagnosed with follicular lymphoma at an advanced stage, there are many good treatment options and approaches, and many people go on to live very full lives with the disease.

This disease starts in B-lymphocytes, the immune cells that normally churn out antibodies to fight infection. When a genetic glitch makes one of those cells grow out of control, it usually settles inside a lymph node and divides quietly. Doctors call that behavior indolent. Picture grass sprouting in a shady yard: it grows, but so slowly that you might mow just a few times each season.

Sneaky Lymphoma Symptoms Often Lead to a Late Diagnosis

Follicular lymphoma, a type of non-Hodgkin lymphoma, is not rare. Roughly 15,000 Americans receive the diagnosis each year, accounting for about one in four non-Hodgkin lymphomas. Most people diagnosed are over age 60, and women are affected slightly more often than men.

Because follicular lymphoma creeps along, many people feel fine at first. A swollen node might be noticed during a dental exam or appear on a CT scan ordered for kidney stones. Classic warning signs — called B symptoms — may include nighttime drenching sweats, unexplained fevers, or weight loss of ten pounds or more, but these occur in the minority.

While “active surveillance” or a watchful waiting approach is taken for many cases of follicular lymphoma, a more advanced diagnosis may mean you need to start treatment right away.

Your medical team will work with you to find the most effective treatment option while maintaining your quality of life as much as possible.

“The best approach is to be careful about when to initiate treatment, and then to choose the proper treatment to try and maximize the response rates … which tend to be quite good in follicular lymphoma,” Dr. Elise Chong, an oncologist/hematologist at Penn Medicine, tells SurvivorNet.

Follicular lymphoma responds well to chemotherapy and radiation. In patients with localized disease — that has not spread — radiation may even be curative. And for patients with advanced disease, several new treatment approaches are showing quite a bit of promise.

Treating Follicular Lymphoma

The recommended treatment, especially in advanced cases, is often a monoclonal antibody called rituximab (Rituxan), alone or in combination with chemotherapy.

“Rituximab targets a protein called CD20 on the cell surface of the follicular lymphoma cells,” explains Dr. Chong. “We’ve been using this antibody for many years now.”

Non-Hodgkin Lymphoma: Options At Relapse

After chemo, doctors may give additional antibody infusions every two months for up to two years — a strategy called maintenance that can prolong remission without adding harsh side effects.

Treatment Options for Follicular Lymphoma

If you are diagnosed with follicular lymphoma, you should discuss treatment options with your doctor. The type of treatment depends on various conditions including your age and overall health to how advanced the cancer has become.

Treatment options include:

• Active surveillance, which includes regular exams and tests
• Monoclonal antibody therapy, which uses lab-created antibodies to kill cancer cells.
• Targeted therapy, targets drug treatments for abnormalities present within cancer cells.
• Immunotherapy, which uses your immune system to fight cancer.
• Radiation therapy, which uses high-power energy beams to kill cancer cells.
• Chemotherapy uses drugs designed to kill cancer cells
• Bone marrow or stem cell transplant,

“A bone marrow transplant is a therapy where your bone marrow and your blood cells are completely replaced by someone else’s bone marrow cells and blood cells,” says Dr. Jun Choi, a hematologist-oncologist at NYU Langone’s Perlmutter Cancer Center.

Living With Follicular Lymphoma

Most follicular lymphoma survivors share a common goal: normalcy. They want to keep working, spend time with family, travel, and otherwise fulfill their life goals. Patients should be reassured that the chronic nature of the disease rarely stops those dreams.

“Quality of life comes down to two things,” Dr. Jain reminds patients. “Is the lymphoma under control, and are we minimizing treatment side effects? When both boxes are checked, people live remarkably normal lives.”

Experts recommend keeping the following things in mind after a follicular lymphoma diagnosis:

• Work and finances: Many people remain employed, especially during watchful waiting or pill-based therapies. Patients can discuss flexible hours or intermittent leave with the human resources department at their job.
• Family planning: Some chemotherapies affect fertility. If you are hoping to conceive children in the future, ask about sperm, egg, or embryo preservation before treatment begins.
• Exercise and diet: Moderate physical activity improves energy, mood, and immune function. Aim for a balanced diet rich in lean proteins, fruits, and whole grains, but listen to your body on treatment days.
• Mental well-being: Mindfulness, yoga, or a simple evening walk can ground your thoughts. Sharing concerns with a social worker or psychologist often lifts a heavy emotional burden.

Questions To Ask Your Doctor

• Do I really need treatment right now?
• How often will you scan or test my blood?
• What are my options, and how do they fit my lifestyle?
• What side effects should prompt an urgent call?
• Am I eligible for a bispecific-antibody trial or CAR T-cell therapy?
• How will this plan affect my work, travel, or family goals?

Be Your Own Advocate

Remember, 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

Learn more about SurvivorNet's rigorous medical review process.

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