This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
I was on the elementary school playground in May 2021 working as a substitute teacher when I got the news: I had breast cancer. It was a lifesaving phone call that almost didn't happen, though. That's because I had to push doctors for the test that led to my diagnosis.
My first two bouts with breast cancer
I was first diagnosed with breast cancer in 2015, when I was 61. It was August, my birthday month. I have dense breasts, which can increase the risk of the disease. Still, I wasn't expecting any bad news to come from my routine mammogram. My gynecologist had recently done a breast exam on me and had given me the all-clear: no bumps, on lumps, no problem.
I went in and had my mammogram, but then I was asked to come back in the next day. During that follow-up appointment, the nurse was curt, and I thought to myself, Uh oh, I'm in trouble. Once the doctor came in, I asked her flat out—because that's the kind of patient I am—"How bad is it on a scale of 1 to 10?" She said, "I think you have cancer."
She was right: I had two tumors in one breast, both diagnosed as HER2-positive after further testing. As the American Cancer Society describes it, HER2 cancers "tend to grow and spread faster than other breast cancers."
Over the next three months, I had 13 chemotherapy sessions. I then had a lumpectomy—surgery to remove the cancerous breast tissue—and 22 sessions of radiation treatment. Once the treatments cleared my cancer, my oncologist put my chances of reoccurrence at about 2% to 3%. But luck would not be on my side.
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In February 2020, I was at a regular checkup with my oncologist when she noticed a lump. It was in the same breast as my lumpectomy, so she assured me it was probably just scar tissue from that surgery.
Then on August 29, 2020, I went in for a routine mammogram. When I walked into the office, before my scan even started, I just knew. I got chills. For whatever reason, I just felt it in my bones that I was going to be receiving bad news once again. I was right. I was diagnosed with breast cancer for a second time, almost exactly five years to the day of first diagnosis. The "scar tissue" turned out to be a 3-inch cancerous tumor.
I wound up having a single mastectomy—meaning they removed my breast—after my second cancer diagnosis. It was a tough surgery to recover from, and I spent four days in the hospital.
Protecting myself during the pandemic
That second cancer diagnosis came during the COVID-19 pandemic. According to the Centers for Disease Control and Prevention, having cancer can make you more likely to get severely ill from COVID-19. Research has also suggested that having a history of cancer may also increase that risk of severe disease. Needless to say, I was eager to get my COVID vaccination. As someone who was considered high-risk, I was at the front of the line to receive the vaccine. Problem was, I couldn't find an appointment.
I called around. I pleaded with everyone who I thought could help me get me on a waiting list. Finally, my nutritionist found an appointment at a drive-thru vaccine clinic in San Jose—an hour and a half away from where I live. I waited in that car line for two hours. I got my first dose of my mRNA vaccine on February 12, 2021. Less than two weeks later, on February 23, I had another routine mammogram and ultrasound.
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Diagnosed with a COVID node
The radiologist who performed the tests showed me the results of my scans. "You can see it's all clear," she said. "Your breast looks great." Still, the doctor did point out that I had a COVID node—adding that it was not to worry about.
I had never heard of a COVID node before, and when I get a piece of information like that, I absolutely want to know what's going on. So when I left the office, I looked it up. Basically, it's a temporarily enlarged lymph node that some people get after receiving an mRNA COVID vaccine. That's because lymph nodes are part of the immune system, and anything that stimulates the immune system—like a vaccine—can affect lymph nodes that are near the injection site. Even though what they found was a normal side effect of a vaccine, they still told me to come back in three months for a follow-up ultrasound.
Three months later, I had a checkup with my surgical oncologist. He looked at my records from the radiologist and saw that I had a COVID node. I told him they found it on my mammogram and planned to do a follow-up ultrasound on it, which he actually reminded me I was due for. For the time being, though, he did a handheld ultrasound during my appointment, and that also only showed a COVID node. Still, he had a suggestion for the ultrasound follow-up with my radiologist: add a biopsy to it.
This surgeon had been my soothsayer throughout my cancer journey, and so when I got that recommendation, I was like a dog with a bone; I wasn't going to give up on seeing it through.
Pushing for a biopsy
I contacted my radiologist who had done my first ultrasound three months prior, as well as my non-surgical oncologist, and asked them to biopsy what was believed to be a COVID node. They were hesitant to do it. It's not that they discouraged it, but they didn't exactly encourage it either—they were in a gray area of whether a biopsy should be done. After all, an isolated recurrence is rare, they said. Plus, their offices had state-of-the-art mammogram equipment. I had a clean mammogram and two clean ultrasounds. That had to be conclusive enough, right? But still I insisted: "No, I want it."
Finally, they agreed to a biopsy. My radiologist was about to go on vacation, but I pushed to get an appointment before she left. They did an ultrasound to locate the node and then did the biopsy. Before leaving, I asked just one thing: If I'm positive for cancer, please reach out to me to let me know in a conversation. The last time they contacted me about a cancer diagnosis, I found out at 11 p.m. on a Sunday; the automatically generated email came to me before the office called me. I didn't want that happening again.
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Breast cancer, round three
About five days later, I was on the playground doing substitute teaching when I got a call. It was my oncologist, calling on behalf of my radiologist, who had already left for her vacation. Her voice was shaking, and I said, "You're calling; it's not good news."
"We've got the biopsy back," she said. "None of us thought that it would be positive. We all thought it was going to be negative." I knew I had to take on the role of soother for her at that moment. She was distraught, having told me months prior that I had probably nothing to worry about. I calmed her down. I said, "It's OK. We'll get through this. It's all right."
They had missed my cancer, delaying my care. But I wasn't angry. I don't blame anyone. Rather, I was glad and grateful. Glad that I had followed my gut and insisted on getting a biopsy and that the radiologist fit me in before she left for her vacation. Grateful that the COVID vaccine saved my life. Without it, my outcome might have been very different.
The COVID vaccine didn't cause my cancer. My cancer was—unbeknownst to anybody—already in me, a few bits having been left over from my last mastectomy. What my COVID vaccine did was make it easier to find the cancer that was already there. Because, yes, I did develop a COVID node after my vaccine. But it was that reaction that made it more obvious for doctors to find my tumor—since my cancer cells were hiding inside that enlarged lymph node. My body did its job; it was my job to use my intuition and advocate for myself by demanding a biopsy.
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Learning to trust your ‘health intuition’
On a mammogram, the lymph node was very small, but by the time my doctors went in six months later, the lymph node had enlarged to the size of a golf ball.
I took chemotherapy that directly targets the HER2 and had a PET scan to see how my body was reacting to the treatment. I was terrified of what the results would be, but I told myself, Jill, you can do this. You're going to get through it either way. The PET scan showed no signs of cancer. I had been proactive, and that's what you have to do when it comes to advocating for your own health.
Now I'm being closely watched. That means that I have a mammogram in six months and then an MRI in another six months. Then six months from then, another mammogram. Sure, my follow-up appointments might be nerve-wracking, but from this experience of fighting for my diagnosis, I proved to myself just how in charge of my health I am. Yes, the doctors have the education, they know what the textbooks say, but I know my body. I can take that charge and act on my hunches.
That's my message to others who might be dealing with doctors who don't want to order a certain test or who downplay certain symptoms or findings: learn how to trust your intuition. You believe in animal intuition and mother's intuition? Now start believing in health intuition.
If you have a story to share about being misdiagnosed, email us at email@example.com and join our Misdiagnosed Facebook community to talk to women who share the same struggle.