At first, Gina Hollenbeck was told that her chronic cough was due to seasonal allergies, then a second doctor chalked it up to gastric reflux. It was a chest X-ray she insisted on paying for out of pocket that led to her terminal cancer diagnosis.

By Emily Shiffer
March 13, 2020

This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.

Gina Hollenbeck, 43, made it her professional mission as a nurse to help women get the best health care. And even as the working mom of two young boys, she always took good care of her health. So when she developed a cough in June 2015, she took notice.

“I was eating organic, I had recently gone vegan, and I was playing competitive tennis and running half marathons,” she tells Health. “I kept thinking it was kind of strange, I’d cough up gunk but then get better. However, I had run a couple of 5Ks, and my time wasn’t as good as usual. I started to question what was wrong with me."

Toward the end of July, with her cough still lingering, she noticed she was losing weight. Already fit, she didn’t have weight to lose. “The first thing that came to my mind from my medical experience was when you start to lose weight inexplicably, it could be cancer," she recalls.

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Since she didn't have a regular primary care physician, she made an appointment with her ob-gyn. “I told him I thought something was wrong, and could I get a chest X-ray? But he just said, ‘Oh Gina, you’re 38, you’re an athlete, you do everything right. I don’t want to expose you to the radiation. I think this is seasonal allergies.’”

At the time, she thought it made sense. So she started taking allergy medicine and waited two weeks to see if her symptoms improved. But they only got worse. “My cough was becoming a lot more intense,” she says. “Every time I laughed, I would have to cough.”

Certain she didn't have seasonal allergies, she thought it could be pneumonia. So she called an ear, nose, and throat doctor and explained her situation, and that her cough was more intense and her energy levels were down. She was hoping to get a chest X-ray.

“He told me to come into his office, and he looked down my throat and said, ‘You have gastric reflux.’ He gave me acid reflux medication and said to give him a call in two weeks." Frustrated, she followed her doctor’s orders. But a new symptom presented itself in August: a terrible pain in her left shoulder.

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“It was really, really bad, but I was still working out and thought it was from that. I thought I must have pulled a muscle,” she says.

She went to an orthopedic doctor, who did an X-ray to investigate her shoulder pain. “I was told they didn’t see anything wrong with my shoulder, and was sent home with a muscle relaxer,” she says. (Bone pain from the pressure of a growing tumor in the lung can affect the spine, which may have been the actual source of her back pain.)

At this point, Hollenbeck continued to lose weight and was feeling more desperate than ever.

“I felt like I was aggravating the nurses at the doctors' offices. My cough wasn’t going away, and I just wanted somebody to give me a chest X-ray,” she says. “I felt like I had exhausted everything, and that they thought I was a hypochondriac. As a nurse, I knew those kinds of patients. So I backed off.”

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Defeated, she didn’t seek any medical attention for her progressing symptoms for two more months.

“It was a Friday in October, and I just needed to figure out what was going on with me. I called out of work (she was working as a nurse at a nonprofit that helps women access prenatal care) and got in touch with a friend who worked at a diagnostic imaging center. I asked her if she could work me in for a chest X-ray, even though I didn’t have a doctor’s order. She got me in, and I paid out of pocket, about $75.”

Immediately after the chest X-ray, the radiologist was alarmed. “I was told something was really wrong: In the upper left lobe of my lung was a mass, and I needed to see a pulmonologist today. They weren’t sure if it was a blood clot or something else.”

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After calling the pulmonologist’s office, she was told they didn't have an opening for two months. Scared and worried, “I told them I don’t think I can wait for two months. I have a chest X-ray that shows something is seriously wrong. All they could offer me was that if I thought it was an emergency, that I should go to the emergency room. So I did.”

At the emergency room, “I had my chest X-ray in hand, and it made the ER doctor take me seriously.” She was given a CT scan, and the doctor who treated her said he had a friend who was a pulmonologist and could get her an appointment.

“I asked to the ER doctor, do you think it’s lung cancer? And he said ‘No, you’ve never smoked, you’re a runner.' He thought it was either pneumonia or a fungus in the lungs, but that I’d need to see the pulmonologist and have a biopsy."

In the pulmonologist's office, Hollenbeck really started feeling sick. She was experiencing fatigue and it was difficult to sit up and talk to the physician. “I wasn’t myself. Things just weren’t adding up. I said, ‘Do you think this could be lung cancer?’ And even he said it’s unlikely, but that I needed a biopsy to know for sure."

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The biopsy involved a long scope that would take a tissue sample from Gina's lung, and when she woke up from the procedure, the first thing she asked was, “Do you think it’s cancer?” The pulmonologist again told her he really didn’t think it was, but pathologists would know for sure. A week later, her results were in.

“My family and friends knew how sick I was—I'd taken a medical leave of absence from work—and we were all waiting for the results. We were really anxious,” she says. “They called me and told me that I had tumor cells, and that I had a type of lung cancer called non-small cell lung cancer. I was in complete shock. I just thought, I don't even know how to smoke! I wasn't exposed to secondhand smoke. I couldn’t believe this was happening.” Non-small cell lung cancer accounts for 80-85% of all lung cancers, according to the American Cancer Society.

Later, she and her husband, Greg, told their sons, ages 12 and 7, the news. “We’re a really close family, and we let them know what was going on with each step at my doctor’s appointments, including the night we found out I had cancer. We told them that we’re not really telling anybody at this point, but if you want to tell a friend it was okay. We wanted them to have channels to talk to. We eventually started getting family therapy because it was really stressful on my kids.”

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“Somehow I was able to sleep that night. The oncology nurse was so calm and assured me my doctor would go over all my scans tomorrow and that we’ll figure out a plan,” she says.

Hollenbeck's next doctor was a thoracic oncologist (a doctor who treats lung cancer), who gave her more information about her cancer.

“I had three tumors in the left upper lobe of the lung, and the cancer was in my lymph nodes in the middle of my chest, also wrapping around my trachea and blocking my pulmonary artery,” she says. “I was looking at it on the scans and understanding the severity, I didn't feel that bad.”

The doctor informed her that lung cancer "likes to go to the brain," so she was sent for a brain MRI immediately. Cancer was found there as well. She was diagnosed with stage 4 lung cancer and given a bleak outlook: she’d never be cured.

While the traditional treatment of surgery, chemotherapy, and radiation were discussed, she was also encouraged to get genomic testing (also known as biomarker testing). This process tests the DNA of the tumor, and knowing this could help doctors match her with a targeted therapy to stop the cancer from growing.

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In 2015, the technology was new, and her insurance didn’t cover it. But she and Greg agreed it was worth it to pay for themselves. The test would use tissue from her biopsy, and in the meantime she went for a second opinion. The second opinion, however, were less than encouraging.

“They saw it was in my brain, and the head of the thoracic department told me I had 10 months to live. I had the best of the best telling me that,” she says.

Just as she did when she found a way to get a chest X-ray none of her doctors would order, Gina took charge of her cancer treatment and began researching young non-smokers with lung cancer. “I found case studies of young women who had lung cancer linked to genetic alterations, specifically once called ALK. There were two therapies to treat it at the time, and I was just hoping my biomarker testing came back showing I had that.”

It did. “The nurse at my first doctor's office called me and said I’m ALK positive, and I was jumping up and down! I had just won the lung cancer lottery,” she says.

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Since finding out she was ALK positive, Hollenbeck has undergone an exhausting regimen of treatments, testing, and targeted therapy. In January 2016 she had brain surgery to remove a large tumor, and six weeks later underwent another procedure using Cyberknife concentrated radiation. Between that and her targeted therapy, the tumors in her chest were gone after six weeks.

She also had the upper left lobe of her lung removed, something she says her doctor had to convince a thoracic surgeon to do. “Typically with Stage IV cancer, they won’t do surgery on your lungs because it always comes back. You’re never cured. But I was going to be the first ALK positive patient to get cured,” she says.

About six months after her lobe removal, however, doctors found a recurrence of cancer in her brain. “Devastated is an understatement. I had tears. I realized then that I wasn’t going to be cured,” she says. She tried a new targeted therapy that had just been FDA-approved, which kept her cancer-free for three years.

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In March 2019, Hollenbeck had a setback. “I started developing fluid around my heart, and we weren’t really sure why. I went to ER three times in three months with severe abdominal pain. After a number of scans, nothing was showing up. Then my doctor found cancer had come back all around my heart and pancreas. I was pretty sure I was going to die,” she says.

Another targeted therapy that had been recently approved by the FDA, lorlatinib, worked for her. After two days on it, she was “up and exercising.”

Today, Hollenbeck is cancer-free with no evidence of disease, but she will have to continue taking therapies the rest of her life. For now, her lorlatinib treatment is working. “My quality of life is back to normal and I’m doing all of the things I love,” she says.

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Instead of returning to work as a nurse, she’s using her experience to advocate for ALK positive patients and those with lung cancer. She now serves as president of the nonprofit ALK Positive, a support and advocacy group that helps extend the lives and quality of care for people living with lung cancer.

She encourages everyone to trust their gut if they think something is wrong with their health. “Don’t give up if people tell you you’re a hypochondriac,” she says. She also encourages those with a cancer diagnosis to seek genomic testing. “My husband and I had to advocate for biomarker testing,” she says. “The truth is, not all doctors understand all treatments and drugs."

Another goal is to change the face of lung cancer. “Anytime somebody knows I have lung cancer, the first question they ask is if I smoked, which I never did. But it doesn't matter how we got the disease. We have to figure out how to treat it,” she says. “Nobody deserves this disease, and I wish the doctors that misdiagnosed me had known to look for it. Maybe we could have caught it at an earlier stage.”

If you have a story to share about being misdiagnosed, email us at misdiagnosed@health.com and join our Misdiagnosed Facebook community to talk to women who share the same struggle.

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