March 10, 2025

Stage 3B Follicular Lymphoma: Hayley’s Patient Story

Hayley, a nurse from Missouri, shares her experience after being diagnosed with stage 3B follicular lymphoma. Her story started when she experienced an intermittent sensation of pressure above her collarbone or clavicle, which she attributed to a pulled muscle due to home renovations.

However, when she saw a significant lump in her neck and started wheezing while breathing, those first symptoms changed her mind, motivating her to seek medical advice. A chest X-ray revealed an unusual widening in the center of her chest. With her medical background, she decided to advocate for herself, leading her to insist on a CT scan.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Hayley found the diagnosis surreal, especially considering her age and the absence of major symptoms. All of a sudden, she found herself on the receiving end of news she was accustomed to delivering in her professional capacity. Her doctor revealed the presence of a chest mass and tumors, suggesting the likelihood of lymphoma. Initially, an oncologist indicated it might be Hodgkin’s lymphoma, known for its high cure rate, but further tests confirmed it was a rare and aggressive form of follicular lymphoma.

Facing the reality of her stage 3B follicular lymphoma diagnosis, Hayley leaned on her medical connections to seek a second opinion at the Siteman Cancer Center. While initially resistant, she appreciated the proactive support from her family.

Adjusting to her new reality, Hayley transitioned from documenting her emotions in a diary to sharing her experiences on her social media, finding solace in connecting with others. She underscores the importance of maintaining a positive mindset in the face of her stage 3B follicular lymphoma diagnosis, emphasizing that it is not a solitary battle. Hayley acknowledges the physical toll of treatment, yet appreciates the opportunity to find her way through, highlighting the resilience cancer patients must foster. Her story serves as a testament to the strength and determination needed to navigate such an unexpected life challenge.

Name:
- Hayley H.
Age at Diagnosis:
- 30
Diagnosis:
- Follicular Lymphoma
Stage:
- Stage 3B
Symptoms:
- Intermittent feeling of pressure above clavicle
- Appearance of lumps on the neck
- Mild wheeze when breathing and seated in a certain position
Treatments:
- Surgery
- Chemotherapy

Thank you to Genmab for supporting our patient education programming. The Patient Story retains full editorial control over all content.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

Introduction
Before My Diagnosis
My Test Results and Diagnosis
Next Steps
My Actual Diagnosis and My Reaction to It
What Keeps Me Going

My biggest thing with cancer in general is that you’re not alone.

Introduction

My name is Hayley. I’m from Missouri. I work in an emergency room as a nurse.

I was diagnosed with stage 3B follicular lymphoma.

Before My Diagnosis

I was diagnosed on October 23, 2024. My story starts about three and a half weeks before that.

We were working on our flooring in the house when I felt this pressure on the side of my neck, deep down, above my clavicle. It felt like someone was pushing on my throat. It wasn’t like a sore throat or a lump in my throat. I would take my shirt off, and as soon as my hands would go above my head, it felt like something was choking me. If I was lying down in a certain position, I would feel the same thing.

I chalked it up to a pulled muscle or something because we were working on our flooring. The pressure was there for about three weeks, and it would come and go, so I kept writing it off.

When I woke up one morning, there was a massive, golf ball-sized lump, so I realized it wasn’t a pulled muscle. I also felt like I was wheezing when I breathed out.

I called my primary and got in that day with a nurse practitioner. They pushed on my throat to see if it was my thyroid. They also requested blood work and ordered a chest X-ray. They called me later that day and said, “The X-ray shows a widening of your mediastinum and we’re concerned that there might be a chest mass.” I called the hospital where I work and said, “I’d like to get a CT,” because I wasn’t going to bed thinking that I had a chest mass.

I thought, this can’t be real. It was like every fear that I ever had was coming to reality. And — I’m only 30. How is this happening?

My Test Results and Diagnosis

Being on the “other side” was surreal. I requested that CT from my colleagues. I work with one particular doctor all the time and usually, I’m the person standing beside him and giving these diagnoses.

The doctor sat down beside me on a stool and started crying. He went, “You have a bulky chest mass and two tumors here and one in your abdomen. It’s very probable that you have lymphoma.”

I looked at my boyfriend and said, “Are you hearing what I’m hearing? This can’t be right. I’m 30 and I feel invincible. I feel so healthy. I don’t have symptoms. What are you talking about?” When the doctor used the word “cancer,” it shook me. I said, “No way.”

I thought this can’t be real. It was like every fear that I ever had was coming to reality. I’m only 30. How is this happening? The patients I see are much older — 75, 85, 90 years old. I couldn’t help but think, “What did I do wrong? How did I get this? What could I be doing that could have caused this?”

Next Steps

I went to the oncologist the following day and he told me, “With your age and how you’re presenting, it’s probably Hodgkin lymphoma, which has a 98% cure rate,” so he got my hopes up. He said that I needed to have a biopsy done. He also said, “You’re going to lose your hair.” But as it turns out, it wasn’t Hodgkin.

I have family who know people at the Siteman Cancer Center downtown. It’s one of the top cancer centers in the country, especially for lymphoma and stem cell transplants. They urged me to get a second opinion from a lymphoma specialist. I was grateful for the advice, but I trust the people I work with; the doctor knows what he’s doing. He already seemed confident in what my treatment would be. If it turned out to be something very rare, he’d send me to a specialist.

But as it turns out, they went behind my back and called Siteman for a favor. Siteman called me on a Tuesday and said, “We can get you in tomorrow.” I was happy because being treated there would be like a dream come true.

There is a way to get through it, and that’s through keeping a positive mindset when you can.

My Actual Diagnosis and My Reaction to It

After I had my check-up, the doctor called and said, “You have follicular lymphoma, stage 3B.” I thought, “What are you even talking about? What is 3B? I thought we were done.” We knew it wasn’t Hodgkin — it was non-Hodgkin and we also knew that it was follicular.

Follicular lymphoma is usually a slow-growing, or indolent cancer, but stage 3B is fast-growing. I have a fast-growing follicular lymphoma that’s super rare and aggressive.

Back then, I was writing in my diary every day about all of the emotions I was experiencing. I did that for nine days, which was the worst period, and I haven’t looked at it since. I made an Instagram and TikTok, and transitioned to using them instead since they’re much easier to use. But I’m glad I tried writing in a diary because I couldn’t relive that experience if I tried. I suspect I have a mechanism in my head that almost blocks it all out.

What Keeps Me Going

I feel like other cancer patients would feel the same way I feel — like you don’t have a choice. You put one foot in front of the other, and you don’t have a choice beyond that. You go through the motions and all you see is the next step. How am I going to get to the end of it? Whatever I have to do to be healthy again is enough for me to keep going.

I do feel bad for my body. I try and take such good care of it and yet I keep putting toxic stuff into it to try to deal with the cancer. But in the end, I appreciate being given the chance to fight. Other people don’t even get a chance to fight. They could get in a car accident or other catastrophic things could happen to them.

I also need to emphasize that once you get a cancer diagnosis, that’s not the end of it at all. If you can keep your mind positive, that would be great. I know it’s hard because I have my tough days for sure.

My biggest thing with cancer in general is that you’re not alone. It’s so isolating when you hear those words coming out of your doctor’s mouth: “You have cancer.” I felt like no one could understand what I was going through, that my life was over, and that I was never going to be the same.

Of course it’s not true. Everyone in every walk of life has to deal with something like this and can deal with it. It just makes you so much stronger mentally and physically.

There is a way to get through it and that’s through keeping a positive mindset when you can.