Doctors Dismissed the Lump on My Neck as a ‘Swollen Lymph Node’ for 5 Years—but It Turned Out to Be Cancer
This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
There’s a running joke that medical students think they're suffering from every condition they learn about. So in 2007, when I felt a lump on my neck during my first year of medical school at Howard University in Washington DC, 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.
Still, after class one day, I showed the lump to my friends and asked them what they thought. They encouraged me to get it checked out, which I felt confirmed my gut feeling that this actually was something worth panicking over.
The doctor I saw at the campus health center, however, thought differently. “It’s probably just lymphadenopathy,” he said, “swollen lymph nodes.” He said it was “nothing to worry about” and wrote me a prescription for antibiotics. I took the medication and waited, as I was told, 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 med 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 also take a look at my neck. They always said the same thing: “It’s just swollen lymph nodes, nothing to worry about.”
Red flag symptoms
But the lump was growing, and I became increasingly concerned about it during a class on pathology, or the study of disease. I would sit through lectures on the characteristics of tumors doctors should be concerned about, and my lump had all of the red flags they would outline in the lecture—like if the tumor was hard, fixed, and had lymph nodes on it.
In my fourth year of med 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 every day while working in that department.
Throughout the rotation, I desperately wanted to talk to one of the doctors about it. The doctors at campus health continued to tell me that I didn’t need to worry, but I wanted another opinion. 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 took a look at the lump and said: “Don’t worry, it’s probably just a big lymph node. It’ll go away on its own.”
This was a surgeon I had worked with for weeks, one who I respected and trusted. OK, I thought, if he’s saying it’s nothing, then it really must be nothing.
When I graduated from med 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 doctor. So when I had my first appointment, I asked my new doctor 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.”
In the months after that appointment, however, I started to have more symptoms. The lump began to feel sore and achy, and I even became a bit 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 laid down, I could not fall asleep.
I went back to my primary care doctor and told her things had gotten worse. She said that my symptoms did sound 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 CT scan on 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, when I went to get my stitches out, my doctor had bad news. The tumor was cancerous—and the cancer cells had spread to my lymph nodes. Later, a doctor would tell me that I had a better chance of winning the lottery than getting this type of cancer.
My doctors didn’t have a clear plan of action because of how rare the cancer was. They decided to do a procedure called a modified radical neck dissection, where lymph nodes and other tissues under the neck (where cancer cells may have spread to) are removed. If it worked, I would be cancer-free. If it didn’t, I would have to undergo radiation.
The second surgery didn’t go as well as the first. When I woke up, the surgeon told me that after he had removed the lymph nodes and other tissues, he noticed the internal carotid artery (which supplies blood to the brain) was leaking. That was the artery my tumor had been wrapped around, but any problems with it should have been taken care of during the first surgery. To close the leak, my surgeon decided to put a stitch in the artery wall, a common fix. When he tried to put the stitch in, however, the artery fell apart.
They immediately called a vascular surgeon to the operating room, and he was able to put in a graft, or an artificial artery. Somehow, my vitals were stable the whole time, and I was completely responsive when I woke up. It was a close one, my doctors told me, but it seemed like all was fine.
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 again, I didn’t understand why. The strangest thing, though, was when I looked down at my lap and saw my grandmother’s arm resting in it. My grandmother isn’t here, I thought. This doesn’t make any sense.
Oh shit, I thought, I’m having a stroke. I remembered that one sign of a right-sided stroke (which occurs when the blood supply to the right side of the brain is interrupted or reduced) 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 the doctors. They took me back to the operating room and found there was a major blood clot in the artificial artery they had put in during surgery, which had caused the stroke.
I later woke up in the intensive care unit. 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 I was in the hospital, and 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 was able to come to New Orleans to take care of me. I had countless follow-up appointments, and I was in physical, occupational, and speech therapy for months.
My leg got better quickly, but my arm and my speech took more time. Thanks to the stroke, my tongue now permanently points to the right, so I had to relearn how to speak, chew, and swallow. I also lost a lot of the sensory function in my left hand. In occupational therapy, I worked on adjusting to that loss of sensation. Now, I compare the sensation that I have 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 doctors I worked under knew exactly what I had gone through, and 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, DC and got a master's degree in public health. I lived with my sister and my 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.
It wasn’t until later that I started to let myself feel the emotions that come with being sick. 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, and I agreed. Looking back, I don’t think I was letting myself feel.
Years after surgery, I started having symptoms of post-traumatic stress disorder. 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 from the possibility of the cancer coming back and having to go through the whole thing all over again.
Eventually, the flashbacks and anxiety turned into panic attacks. That was what made me realize that I needed to start seeing a therapist, five years after my surgeries. By going to therapy all those years later, 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 it. And I know that it’s OK to feel.
I currently work as a child neurologist at UNC Medical Center at the University of North Carolina, Chapel Hill. I don’t know what kind of doctor I would have been had I not been diagnosed with cancer, but I do know that my experience has made me the doctor I am today.
Advice from a misdiagnosed patient who is also an MD
I understand what it’s like to be a patient. I understand why patients get angry at their doctors and why they aren’t always in a good mood. I realize that I’m often seeing a patient on one of the worst days of their life, and that doesn’t necessarily mean it’s the worst day and it’s going to get better tomorrow—the next day could be even worse. I get it, and that’s why I don’t hold anything against my patients.
No matter how stressful my days are as a doctor, even if I work a 28-hour on-call shift and get yelled at by frustrated patients, I would still take 100 of those days over one day of being a cancer patient.
Anyone with unexplained symptoms should keep talking to their health care providers—keep asking questions, keep searching even if you run into barriers. There are providers out there who want to help you. I also hope those of us who work within the health care system will check our own biases. And I encourage patients to reach out to patient advocacy groups and talk to trusted loved ones for support.
If you have a story to share about being misdiagnosed, email us at [email protected] and join our Misdiagnosed Facebook community to talk to women who share the same struggle.
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