Nadia’s Small Lymphocytic Lymphoma with Unmutated IGHV Story

Nadia’s SLL story proves how important perseverance and self-advocacy are when your health is on the line.

When Nadia started experiencing rashes, fatigue and unexplained neck pain, she listened to her body’s warnings and visited her general practitioner.

This started Nadia’s fight to be taken seriously by her doctors. Then 6 months, 4 doctors and 2 biopsies later, she was diagnosed with small lymphocytic lymphoma.

Thank you for sharing your story, Nadia!

• Name: Nadia K.
• Diagnosis:
  • Non-Hodgkin’s lymphoma
  • Subtype: Small lymphocytic lymphoma
    • Unmutated IGHV
• Symptoms:
  • Rash
  • Lump under arm
  • Fatigue
• Treatments:
  • Ibrutinib
  • Acalabrutinib

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

VIDEO: 1st SLL Symptoms and Medical Gaslighting

Introduction and 1st SLL Symptoms

Tell me about yourself

I haven’t worked since I got the diagnosis. Before that, I was actually an administrator for a church where I live. I was working on my master’s thesis in English at the time. 

Outside of that kind of work and academic stuff, I am fairly artistic. I was a Zumba teacher at one point, and I do lots of hula hooping and photography.

Can you describe your first SLL symptoms?

The first thing is that I started getting a rash on my lower legs, and it was worse at night. Sometimes I would get welts or bumps with it, and sometimes not. I didn’t know what was going on. 

I thought, “This is really strange, and why is nobody else in the house getting this if there’s insects or something?” That went on for a while and then kind of eventually calmed down. Then the rash that I previously had started spreading.

A Series of Doctors

What happened with your first doctor?

Initial visit

I went to the general practitioner that I had previously seen for the rashes and said, “I found this lump under my arm. It didn’t go away.” He felt that lump. He didn’t examine me anywhere else, and he said, “We’ll send you for a mammogram, an X-ray and some blood tests.” 

I had also gotten really bad anxiety out of the blue at that point, and I now know why and what it was. I also went on medical leave that same day because I had gotten this anxiety and fatigue, and I didn’t know what was going on. 

Then I started a 2-week medical leave, and these tests were ordered. I went for the mammogram, I went for an X-ray, I went for the blood test, and everything was normal. 

Follow-up

When I went back to that doctor for the follow-up, he said to me, “Yeah, there’s nothing wrong with you. You must have just had an infection.” 

I tried to tell him, “No, wait, there’s more I’m concerned about.” These rashes and things were starting to cause alarms to go off. 

Anyway, he cut me off, and he said, “I can tell that you’re just one of those anxious patients who needs a little more coddling.” He shooed me out of his office without even letting me tell him about what the other concerns were. 

I left his office, and my anxiety didn’t go away. I now know that that’s a common symptom of types of physical illness. Your body is trying to communicate to your brain that something is going on, and you get anxiety as a result. That’s what my anxiety was.

The more I got told that I was just anxious, the worse my anxiety actually got because I was getting quite sick, quite fast, and it felt like nobody was really believing me.

What happened at your second doctor’s visit?

I went on a short vacation on the Labor Day long weekend. I saw pictures of myself we had taken during that vacation. My abdomen didn’t look right. I just had a really foreboding feeling. 

When I got home, I went to a different medical clinic that a friend had recommended, and I waited in line to see a different doctor. I said, “I’m going to make someone listen to me and to these other concerns.” 

I saw the doctor that day, a new guy who turned out to be wonderful and one of my biggest advocates. “Yes, I have some anxiety, but I also have all these physical symptoms,” I said. “This previous doctor didn’t listen to me, and something’s wrong.” 

He did a physical exam, and he said, “You don’t just have a swollen lymph node under your arm. You have them all over.” His face looked alarmed. He had allowed me to tell him about the rashes and all the other stuff. 

He said, “Okay, we’ll order some additional blood tests that weren’t done before.” They were for autoimmune illness and different sorts of things. Then he said, “I’m going to send you for urgent medical assessment.”

Can you describe the impact of being heard by your second doctor?

Getting a second opinion for your SLL symptoms

The first doctor was kind of my stand-in GP because we have a doctor shortage here. He’s the person I’d always seen. Being cut off and silenced was kind of scary. Of course, a lot of people, including me, are intimidated by doctors. 

I didn’t know what to say to him, but that feeling just didn’t go away. I was like, “I need to get a second opinion or someone else to hear me about these other things.” 

He was treating me like I was a hypochondriac or some kind of hysterical woman.

When this other guy did, I told him a bit about myself. I told him what I did for work, what I was doing in school, and we had some commonalities. He was just really compassionate, and he actually listened and took the time to hear what I was saying and do a physical besides just under my arm. 

It was something else to actually be heard. When he told me he was going to send me to urgent medical assessment, I got really scared because I was like, “I need to do that. It’s not what I want to do, but at least he’s going to get it done for me.” 

He told me all these tests he was going to do. He mentioned these different illnesses, Lyme disease and autoimmune stuff. I said, “But could it be lymphoma?” 

Regular Check-ups

I was like, “Okay,” and then he said he’d call me later to follow up. Even that night after I went home, he called me on his cell phone from his car on his way home to see how I was doing. He continued to follow up and text with me throughout to check on things. 

When I told him some of the other things that happened down the road where I wasn’t being believed and stuff, he got quite upset. Anyway, he then requested a review of my case after that because of the things that happened later.

His name is Dr. Jeremy Etherington. He’s lovely. He had 2 motorcycle accidents after I met him, and he still didn’t forget about me and texted me when he got back and said, “Hey, how are things?” 

When I finally did get the diagnosis, he said, “I see hundreds of patients, dozens every day. When you came in, I could tell by your concern and the things that I was seeing that this was not just a cold or some minor thing.”

What happened when you visited your third doctor?

In mid-September, I went to the urgent medical assessment clinic at the hospital where I live to see an internist, whose job it is to look at my symptoms and then try to figure out what’s going on. I call him Dr. T. because his last name starts with a T.

I was sitting in the room. He walked in, and he was this huge man. He said, “Hi, do you know why you’re here?” 

I said, “I have multiple swollen lymph nodes. So far I’ve had 2 rounds of blood tests, a mammogram and an X-ray.” I basically said, “I’m here because I have generalized lymphadenopathy. We can’t figure out why.” 

He looked at me, and he said, “I don’t believe you have swollen lymph nodes.” Then I was in shock because I thought it was his job to figure it out. 

I had to tell him to come feel where they were so that he would believe me, and then he did. He was quite gruff, and he said, “Okay, we’ll do these other blood tests, and we’ll do a CT scan.” He was extremely gruff and extremely dismissive. 

Feeling unheard

I feel like he was treating me like I was a hypochondriac or some kind of hysterical woman. I thought, “Why is he talking to me like this? Why would they send me here to waste your time if I don’t have swollen lymph nodes?” That was bizarre, and I can’t explain it. I still kind of want to write him a letter to just tell him. 

Actually, I didn’t go to the first CT scan that he ordered because I had a job interview that day already. I was also really scared of getting a CT scan, and so it was a cancellation. I said I couldn’t do it. Then they pushed it ahead. The next one was October 4, so I went to that.

SLL Symptom Progression

How were your SLL symptoms progressing?

While I was waiting for that CT scan, I was at work one day, and I started getting this pain in my hip. I got up from my desk, and I fell to my knees and couldn’t stand up because I had such bad pain in my hip. 

My work had already seen me going through all these tests and doing all this stuff. I was like, “Something else is going on now. I need to go home and get it checked out.” I got home, and I laid on the floor for a couple of hours because the pain was so bad that I couldn’t get up. I crawled into bed. 

First thing in the morning, I went to the clinic, which was the first doctor that I had seen about the lump. He figured that I had shingles because when I woke up, I’d gotten a rash where the pain was. I’d never had that before. That was like September 29th. All those other symptoms were getting worse.

CT Scan

Then I had the CT scan on October 4th. Again, I came home from that appointment, and I don’t know what it was about the CT or the contrast, but my neck then flared up in a way that was even worse than it had been before. I’d actually had this burning pain in my neck for a while, but I thought it was back pain or something. 

Within a day or 2 of getting that CT scan, Dr. T. phoned me. He said that the radiologist who looked at the CT scan phoned him before he even sent them the report to say, “You need to get this woman a biopsy for lymphoma protocol.” 

He wanted to biopsy lymph nodes in the left side of my neck. That CT scan found enlarged lymph nodes in my neck and in my armpits and throughout my abdomen. It said that I actually had what they call a conglomerate, a large mass of lymph nodes in my abdominal area and throughout. That kind of explained my swollen stomach.

Were you relieved that there was an explanation for your SLL symptoms?

At least now they believe me that something’s going on. That’s what I felt. At least now they believe me that something’s going on, because they can see it on this image. Now they know, and they’re going to have to figure out why. 

Of course, I was still hoping at that point [it wasn’t cancer]. They said there was an autoimmune illness called sarcoidosis. I was kind of like, “Please be sarcoidosis.”

I’d had 3 sets of blood tests, and everything was normal. The X-ray and the mammogram were normal, and then that CT was really the first thing that showed definitively that something was amiss.

VIDEO: Needle and Surgical Biopsy for SLL

Needle Biopsy

What happened at your core needle biopsy appointment?

He said, “I’ve been doing this for 30 years, and if that was my CT scan, I wouldn’t have the biopsy. I don’t think it’s necessary, and I think you’re barking up the wrong tree.”

That was for a core needle biopsy, which is the bigger needle, and he said that there was no accessible lymph node that was big enough to take a core sample from. He said that my lymph nodes were on the larger side, but not abnormal in his opinion. He told me that he didn’t think that the core needle biopsy was medically necessary.

I didn’t get the biopsy, and I left. I wasn’t sure if I had done the right thing or not done the right thing, but that doctor was just really convincing that he thought it was medically unnecessary and didn’t agree with them doing it.

Why did you end up contacting the internist about the biopsy?

The lovely GP, the second one that saw me that had been texting me, knew I had been going for the biopsy that day. He actually texted me in the morning to say, “Hey, I’m thinking of you. I hope it goes well.” He texted me in the evening to be like, “How did it go?” 

I texted back, “Actually, this is what happened. They didn’t do it.” He got livid. Then I said, “What should I do?” 

He said, “You need to get a hold of the internist and tell him what happened. He’s going to find out anyway, but get a hold of the internist. Tell him what happened and ask them to reschedule.” 

The next day, I phoned the internist who had ordered the biopsy on the recommendation of the radiologist who looked at the CT scan. I phoned him and said, “They didn’t do the biopsy because they didn’t think it was medically necessary.” 

He got angry. What he said was, “I don’t want to get in trouble if there really is something wrong and we miss it.” It wasn’t like, “I’m concerned with you as a patient.” It really came across as, “I don’t want to get medical malpractice.” He said, “I’m going to send you for a surgical biopsy.” 

Then I said, “Wait. You make that appointment and get that referral done. In the meantime, while I’m waiting, can you send me back again for the biopsy? This time, I’ll make them do it while I’m waiting. Maybe that’ll show something in the meantime that I won’t have to have my neck cut open.” 

He said okay. He referred me to the ENT surgeon, and while we were waiting, he’d send me back for another needle biopsy.

Second needle biopsy appointment

I went back to the same hospital on October 30th, so 2 weeks later. Same hospital, but different doctors doing the procedure. This was a younger guy. 

He walked in the room, and he said, “Nadia, why are you here?” I told him all my symptoms. He said, “I read your report, and I looked at the CT scan. I looked with the previous doctor that you went to for the biopsy.”

He said he agreed with the doctor that didn’t do the biopsy 2 weeks previously, that it was medically unnecessary and they were barking up the wrong tree.

He said, “I know you’ve been having these symptoms, but I don’t think your lymph nodes are that swollen.”

In a sense, I did feel crazy… I know it’s something, and nobody is believing me.

For the mass that the CT scans saw in my abdomen, or the conglomerate, he said he didn’t think it was really a conglomerate. He thought it was just that I didn’t have much abdominal fat, so the nodes were just really close together. That’s what he said. 

Convincing the doctor

He even took me in the back to show me his big screens with the CT, and I got to see the inside of my body and stuff. I was like, “Wow.” He showed me all the nodes, and he said, “Oh, these actually aren’t that big.” 

I just said, “Well, okay, I know that you know that, but the person that first saw my CT didn’t even wait to write a report. He phoned the doctor and said, ‘Get her to have a biopsy.'”

I said, “If you don’t do this biopsy, they’re going to cut my neck open. Can we please just do this first before I go to surgery under general anesthetic?” He reluctantly did it because I basically said, “Do it.”

Being Taken Seriously as a Patient

Mental health and being taken seriously

Somehow these 2 doctors — I don’t know what they’re called, but they perform the needle biopsy — took it upon themselves to look at my CT scan and say that they didn’t think it was necessary when I don’t think that that’s even their job there. I think they’re just supposed to do what was ordered. That second time, I made them do it.

I was getting more and more sick, and I could feel myself going downhill pretty quickly. Everybody was just kind of telling me that I was just anxious or treating me like I was just a hypochondriac. If you want to give somebody anxiety, that’s a good way to do it, actually.

I can’t even tell you how awful that felt to be as ill as I was and to not be heard. At that point, it wasn’t even just the doctors, but it was family and friends and my coworkers. I felt like people were treating me like I was crazy. 

In a sense, I did feel crazy because all of a sudden all this stuff is going wrong. I can’t do the things I used to do in terms of functioning, and I don’t know what’s going on. I know it’s something, and nobody is believing me. It was the most alone I’ve ever felt in my entire life, actually, and the most terrifying. 

Self-Advocacy as a Job

Luckily, I did have a counselor throughout this that I was seeing. I would go in and see him every week, and I’d say, “This is going on, and that’s going on.” He actually was a really big support in helping coach me how to talk to doctors. 

He said, “Nadia, look at this like your job. It’s your job to make them figure out what’s going on.” He was awesome. He was like my secret weapon that nobody knows about who just kind of kept coaching me to keep insisting, and he believed me.

He said for a lot of people who have some sort of mental health issue or are having anxiety, it’s very, very common to get written off by medical doctors. That happens anyway. If they think that you have anxiety already, it happens even more.

Results not being taken seriously

The biopsy was inconclusive. It said, “These cells don’t look right, but it’s not enough of a sample to make a diagnosis.” Then at that point, they recommended that I have the surgical biopsy. I went through these periods where even though they did find something, then it wasn’t being taken seriously. That was confusing. 

I don’t know how to explain this, but people who it’s happened to will know. I had a voice inside of me, which I’ve never experienced anything like before. It was some internal voice screaming at me to get help. “Get help. Get help now.” 

I just knew. I just had this knowing, so I tried to push them to get something done. When they’d say, “We don’t think that’s what it is,” then I’d be relieved for a second. Then I’d go, “No. There is something really wrong.” 

Worsening Symptoms

After the core needle biopsy came back that we needed to do a surgical one, I spent all of November kind of waiting for an appointment, and my symptoms were getting worse and worse. I started getting more night sweats, and my throat was getting so sore it was hard to swallow. I couldn’t handle having something touch my neck. 

Then I had this rash that had been mostly confined to my upper body and around my groin, but it was more minor and not painful. It all of a sudden spread all over my butt and the tops of my legs, and I got burning and quite itchy. It was just another thing that I felt like was wrong or falling apart. 

Staying Persistent

I called the internist, Dr. T. I said, “I’m having all this neck pain. It’s getting worse and worse.” 

He said, “I’m not an ENT. You have an upper respiratory tract infection. You need to go see a doctor for an upper respiratory tract infection.” 

I’m like, “I don’t have an upper respiratory tract infection.” I kept phoning his office. I’d phone and be like, “Now I’m having night sweats.” When I phoned him about the rash, he told me that he wasn’t a dermatologist and that I just needed to see a dermatologist. 

I kept phoning because I’m here going, “This is the guy who when I first saw him, said he didn’t believe that I had swollen lymph nodes and treated me like a hypochondriac.”

I’m waiting and waiting for this appointment for the ENT. I’m getting sicker and sicker and more tired and exhausted. I can barely take myself to work and all of these other things. 

I just kept phoning him because I’m like, “I have to make him hurry up because I really feel like I’m going to die if they don’t figure this out.”

Surgical Biopsy

What happened at your ENT appointment