Swollen Lymph Node Turned Out to Be Cancer

Diana Cejas was told the lump on her neck was "nothing to worry about." Five years later, it became a rare type of cancer.

So in 2007, when I felt a lump on my neck during my first year of medical school at Howard University in Washington, D.C., I tried to talk myself out of worrying about it, though I did think it seemed strange. I'm sure it's nothing, I told myself. There's a running joke that medical school students think they're suffering from every condition they learn. 

Still, one day after class, I showed my friends the lump and asked them what they thought. They encouraged me to get it checked out, which I felt confirmed my gut feeling that it was something worth panicking over.

However, the healthcare provider I saw at the campus health center thought differently. 

"It's probably just lymphadenopathy," he said. "Swollen lymph nodes." 

He said it was "nothing to worry about" and wrote me an antibiotic prescription. As the healthcare provider told me, I took the medication and waited, but the lump didn't go away.

Over the next few years, I would mention the lump whenever I went to campus health (which, as a medical school student, was a lot). Whether I was going for a physical, to get a vaccine, or to be treated for something like the flu, I would ask the doctor or nurse to look at my neck. 

They always said the same thing: "It's just swollen lymph nodes, nothing to worry about."

A Seemingly Swollen Lymph Node

But the lump was growing, and I became increasingly concerned about it during a class on pathology (the study of disease). 

I would sit through lectures on the characteristics of tumors doctors should be concerned about. My lump had all of the red flags they would outline in the class—like if the tumor was hard, fixed, and had lymph nodes.

In my fourth year of medical school, I was on a rotation (where students shadow physicians at teaching hospitals) in the head and neck surgery department. It had been about three years since I first noticed the lump, but I thought about it daily while working in that department.

The healthcare providers at campus health continued to tell me that I didn't need to worry, but I wanted another opinion. Throughout the rotation, I desperately wanted to talk to one of the doctors about it. It was entirely inappropriate to ask a surgeon who I was shadowing about a personal health issue. But on one of the last days of the rotation, I made myself do it.

He looked at the lump and said: "Don't worry, it's probably just a big lymph node. It'll go away on its own."

He was a surgeon I had worked with for weeks, one I respected and trusted. OK, I thought, if he's saying it's nothing, it must be nothing. 

When I graduated from medical school, I moved to New Orleans to do my pediatric residency at Tulane Medical Center. Moving to a new city meant I had to get a new primary care physician. 

So when I had my first appointment, I asked my new healthcare provider if she could take a look at the lump on my neck, which was now about the size of a walnut. She, unsurprisingly, told me it was "nothing to worry about."

Red Flag Symptoms

However, in the months after that appointment, I started to have more symptoms. The lump began to feel sore and achy, and I even became lightheaded a few times. I tried to chalk it up to my long, strenuous workweeks, which ranged from 80 to 100 hours, as is typical for a resident. I'm just exhausted, I told myself.

But in my second year of residency, I hit a turning point. One night, when I got home from a 28-hour on-call shift, I couldn't sleep because the lump was so uncomfortable. I had been awake and working for 28 hours straight, and when I finally lay down, I could not fall asleep.

I returned to my primary care physician and told her things had worsened. She said my symptoms sounded unusual, but it was still probably "nothing to worry about." 

I threw a fit. I knew something wasn't right, and I needed answers. She gave in and said we could do a computerized tomography (CT) scan of my neck.

A CT Scan Leads to Surgery

On the day of the scan, I saw my patients in the pediatric unit on the fourth floor of the hospital, and then I went down to radiology on the second floor. I noticed the technician making an odd face while looking at the screen during the scan, but I tried to ignore it.

Afterward, I started to walk upstairs to go back to the pediatric unit and continue seeing my patients, but before I even reached the fourth floor, my primary care doctor was paging me. She said we needed to talk.

She told me I had a carotid body tumor, or a paraganglioma, which is a growth on the neck in the area where the carotid artery splits off into smaller blood vessels that carry blood to the brain. It's a rare type of tumor, and it's "almost always" benign, she said. It had been five years since I first noticed the lump, and I was just now finding out what it really was.

Shortly after, in July 2012, I had surgery to remove the tumor. I was told that the surgery went great, and I was relieved by the thought of finally putting this behind me.

Diagnosed With a Rare Cancer

My relief, however, was short-lived. 

A week later, my primary care physician had terrible news when I went to get my stitches out. The tumor was cancerous—and the cancer cells had spread to my lymph nodes. Later, another healthcare provider would tell me I had a better chance of winning the lottery than getting this type of cancer. According to the National Institutes of Health Center for Cancer Research, paraganglioma occurs in only two out of every one million people and is usually found in people between 30 and 50 years old.

My healthcare providers didn't have a clear action plan because of how rare the cancer was. Ultimately, they decided to perform a modified radical neck dissection. That procedure involves removing the lymph nodes and other tissues under the neck (where cancer cells may have spread). 

If it worked, I would be cancer-free. But if it didn't, I would have to undergo radiation.

Complications During Surgery

The second surgery didn't go as well as the first. When I woke up, the surgeon told me that he noticed the internal carotid artery (which supplies blood to the brain) was leaking. The carotid artery had been the one my tumor was around. 

To close the leak, my surgeon decided to put a stitch in the artery wall, a common fix. However, the artery fell apart when he tried to put the stitch in. They immediately called a vascular surgeon, who was able to put in a graft (an artificial artery). It was a close one, my healthcare providers told me, but it seemed like all was fine. Somehow, my vitals were stable the whole time, and I was utterly responsive when I woke up. 

I stayed in the post-anesthesia recovery unit for most of the day. But as the hours passed, I grew increasingly disoriented. I felt angry. Furious, even. But I couldn't figure out why. Maybe it's just the anesthesia, I thought, or that I'm stuck in this bed.

Then, my room felt overwhelmingly bright, but I didn't understand why. The strangest thing was when I looked down at my lap and saw my grandmother's arm resting on it. My grandmother isn't here, I thought. It doesn't make any sense.

I'm having a stroke, I thought. A right-sided stroke occurs when the blood supply to the right side of the brain is interrupted or reduced. I remembered that one sign of that type of stroke is hemineglect, or forgetting that the left side of your body is yours and thinking it might be someone else's.

My nurse noticed what was happening and called in the other medical staff. They took me back to the operating room, where they found a significant blood clot in the artificial artery they had put in during surgery. That had caused the stroke.

I later woke up in the intensive care unit (ICU). I was breathing with the help of a ventilator, and the left side of my body felt paralyzed. I couldn't move it at all.

Recovering From Cancer and a Stroke

I began physical therapy while in the hospital. Because my arm was more affected than my leg, it didn't take long for me to start walking again. Also, because I was only 30, my body healed somewhat quickly. I was discharged a little over a week later.

Thankfully my mom was a teacher, and my surgeries were in July, so she could come to New Orleans to care for me. I had countless follow-up appointments and was in physical, occupational, and speech therapy for months.

My leg improved quickly, but my arm and speech took more time. I also lost a lot of the sensory function in my left hand. And thanks to the stroke, my tongue permanently points to the right. So, I had to relearn how to speak, chew, and swallow.

In occupational therapy, I worked on adjusting to that loss of sensation. Now, I compare my sensation in that hand to feeling like I'm constantly wearing a thick ski glove. I also have decreased pain sensation, meaning I could hurt my hand and not realize it.

On top of that, I returned to work about a month after surgery to finish my residency. At first, I just attended lectures, which are required for residents. Then, about three months after surgery, I went back to the hospital and slowly took on my responsibilities.

Since I had my procedures at the hospital where I was a resident, the healthcare providers I worked under knew precisely what I had gone through. They were extremely understanding of my gradual return to work. I don't know how I would have done it without that.

The Emotional Fallout

It took over a year for me to feel somewhat like myself again. Though, to be honest, I don't think I'll ever completely feel like I did before. 

After residency, I moved to Washington, D.C., and got a master's degree in public health. I lived with my sister and cousin that year, and being around people so close to me helped me feel like I was getting back to normal—or as normal as I could be.

I'd met with a therapist in the hospital a few times following my diagnosis, but he just said it seemed like I was handling it well. At that time, I agreed. It wasn't until later that I started to let myself feel the emotions of being sick. 

But looking back, I don't think I was letting myself feel.

Years after surgery, I started having symptoms of post-traumatic stress disorder (PTSD). I would have flashbacks to being in the ICU whenever something reminded me of it, which made working in the ICU difficult. I also had severe anxiety about the possibility of cancer returning and having to go through the whole thing again.

Eventually, the flashbacks and anxiety turned into panic attacks. That made me realize that I needed to start seeing a therapist five years after my surgeries. 

After going to therapy all those years, I finally began to process the trauma. I still have anxiety, and some things in the hospital still trigger me, but now I know how to manage them. And I know that it's normal to feel.

I currently work as a pediatric neurologist at UNC Medical Center in Chapel Hill, N.C. I don't know what kind of neurologist I would have been had I not been diagnosed with cancer. But I know that my experience has made me the neurologist I am today.

My Advice

I understand what it's like to be a patient. I understand why patients get angry at their healthcare providers and aren't always in a good mood.

I realize that I often see a patient on one of the worst days of their life. That doesn't necessarily mean it's going to get better tomorrow—the next day could be even worse. I get that, so I don't hold anything against my patients.

No matter how stressful my days are as a neurologist—even if I work a 28-hour on-call shift while getting yelled at by frustrated patients—I would still take 100 of those days over one day of being sick.

Anyone with unexplained symptoms should keep talking to their healthcare providers, asking questions, and searching even if they face barriers. There are healthcare providers out there who want to help you.

I also hope those who work within the healthcare system will check our biases. And I encourage patients to reach out to patient advocacy groups and talk to trusted loved ones for support.

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