My Doctor Misdiagnosed Me With Seasonal Allergies

His article is part of the Health series “Misdiagnosis,” which features the stories of real women whose medical symptoms have been dismissed or misdiagnosed.

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

“I was eating organic, I had recently become vegan, I was playing competitive tennis and running half marathons,” she told Health.” I kept thinking it was kind of weird that I’d cough up gooey stuff, but then I was fine. However, I ran a couple of 5k’s and my time wasn’t as good as usual. I started to wonder what was wrong with me.”

By the end of July, her coughing continued and she noticed she was losing weight. Already fit and healthy, she had no weight to lose.” From my experience in medicine, the first thing I thought was that when you start to lose weight for no apparent reason, it could be cancer.” She recalls.

Since she didn’t have a regular primary care physician, she made an appointment with her OB/GYN.” I told him I felt something was wrong and could I get a chest X-ray? But he just said, ‘Oh, Gina, you’re 38 years old, you’re an athlete, you’re doing everything right. I don’t want you to be exposed to radiation. I think it’s seasonal allergies.'”

At the time, she thought it made sense. So she started taking allergy medication and waiting two weeks to see if her symptoms improved. But they only got worse.” My coughing became more intense,” she said.” Every time I laughed, I had to cough.”

Making sure she didn’t have seasonal allergies, she thought it might be pneumonia. So she called an ear, nose and throat doctor and explained what was happening to her, that her cough was more severe and her energy level was down. She wanted a chest X-ray.

“He sent me to his office and he looked at my throat and said, ‘You have gastric reflux.’ He gave me acid reflux medication and said he’d call him in two weeks.” Frustrated, she complied with her doctor’s orders. But in August, a new symptom emerged: terrible pain in her left shoulder.

“It was really, really bad, but I was still exercising and thought it was from that. I thought I must have pulled a muscle.” She said.

She went to an orthopedic surgeon who gave her an X-ray to investigate the pain in her shoulder.” They told me they didn’t find anything wrong with my shoulder and sent me home to take muscle relaxants,” she said. (Bone pain from the pressure of the growing tumor in her lungs affects her spine, which may be the actual source of her back pain.)

At this point, Hollenbeck continues to lose weight and is feeling more desperate than ever.

“I felt like I was aggravating the nurses at the doctor’s office. My cough wasn’t going away and I just wanted someone to give me a chest X-ray.” She said.” I felt like I had exhausted everything I could and they thought I was a hypochondriac. As a nurse, I know these types of patients. So I backed off.”

After being defeated, she didn’t seek medical attention for another two months because of the progression of her symptoms.

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

Immediately after the chest X-ray, the radiologist had a panic attack.” I was told there was a real problem: there was a mass in the upper left lobe of my lung and I needed to see a pulmonologist today. They weren’t sure if it was a blood clot or something else.”

After calling the pulmonologist’s office, she was told they had no openings for two months. Scared and worried, “I told them I didn’t think I could wait two months. I had a chest X-ray that showed a serious problem. All they could offer me was that if I thought it was an emergency, I should go to the emergency room. So I went.”

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

“I asked the ER doctor, do you think it’s lung cancer? He said ‘no, you’ve never smoked before, you’re a runner’. He thought it was either pneumonia or a fungus in the lungs, but I needed to see a pulmonologist and get a biopsy.”

At the pulmonologist’s office, Hollenbeck was really starting to feel sick. She was fatigued and had a hard time sitting up and talking to the doctor.” I wasn’t myself. Things just didn’t add up. I said, ‘Do you think this could be lung cancer?'” Even he said it was unlikely, but I needed a biopsy to be sure.”

The biopsy involved a long scope to take a tissue sample from Gina’s lungs, and when she woke up from the procedure, the first thing she asked was, “Do you think it’s cancer?” The pulmonologist told her again that he really didn’t think it was, but the pathologist would be sure. A week later, her results came back.

“My family and friends know how sick I am – I’ve taken sick leave from work and we’re all waiting for the results. We were really anxious,” she said.” They called me and told me 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 was just like, I don’t even know how to smoke! I hadn’t been exposed to secondhand smoke. I couldn’t believe this was happening.” According to the American Cancer Society, non-small cell lung cancers account for 80-85 percent of all lung cancers.

Later, she and her husband, Greg, broke the news to their sons, ages 12 and 7.” We are a very close-knit family and we let them know every step of the way when I went to the doctor, including the night we found out I had cancer. We told them that we weren’t really telling anyone right now, but if you want to tell a friend that’s fine. We wanted them to have a channel to talk to. We eventually started family therapy because it was really stressful for my kids.”

“I don’t know why, but I was able to sleep that night. The oncology nurse was calm and assured me the doctor would go over all my scans tomorrow and we’d come up with a plan,” she said.

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 upper lobe of my left lung, and the cancer was in the lymph nodes in the middle of my chest and wrapped around my windpipe, blocking my pulmonary artery,” she said.” I was looking at the scans and understood the severity, and I didn’t think it was that serious.”

The doctor told her that lung cancer “likes to go to the brain,” so he immediately sent her for a brain MRI. The cancer was found there too. She was diagnosed with stage IV lung cancer and given a bleak outlook: she’d never be cured.

Along with discussing traditional treatments like surgery, chemotherapy and radiation, she was encouraged to undergo genomic testing (also known as biomarker testing). This process tests the tumor’s DNA, and knowing this can help doctors match her with targeted therapies to stop the cancer’s growth.

In 2015, the technology was new and her insurance did not cover it. But she and Greg agreed that it was worth paying for herself. The test would use her biopsy tissue, and she also went for a second opinion. The second opinion, however, was less than encouraging.

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

Just as she found a way to get a chest x-ray that none of her doctors would order, Gina took charge of her cancer treatment and began researching lung cancer in young nonsmokers.” I found case studies of young women whose lung cancer was linked to genetic changes, specifically what used to be called ALK. there were two therapies for it, and I was just hoping that my biomarker test would show that I had it.”

Indeed.” The nurse at my first doctor’s office called me and told me I was ALK positive and I jumped at the chance! I had just won the lung cancer lottery,” she said.

 

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

She also had the upper left lobe of her lung removed, which she says her doctor had to convince a thoracic surgeon to do.” Usually with stage four cancer, they don’t do surgery on your lungs because it always comes back. You’re never cured. But I’m going to be the first ALK-positive patient to be cured,” she says.

However, about six months after her lung lobotomy, doctors discovered that the cancer had returned in her brain.” Devastation is an understatement. I was in tears. I realised then and there that I was not going to be cured.” She said. She tried a new targeted therapy that had just been approved by the U.S. Food and Drug Administration (FDA), which kept her cancer-free for three years.

In March 2019, Hollenbeck experienced a setback.” I started getting fluid around my heart and we weren’t sure why. I went to the emergency room three times in three months with severe abdominal pain. After multiple scans, nothing showed up. Then the doctor found cancer again around my heart and pancreas. I was so sure I was going to die,” she said.

Another recently FDA-approved targeted therapy, lorlatinib, worked for her. Two days later, she was “up and exercising.”

Today, Hollenbeck is cancer-free and has no evidence of disease, but she will have to continue taking the therapy for the rest of her life. Currently, her lorlatinib treatment is working.” My quality of life is back to normal and I’m doing all the things I love,” she said.

Instead of returning to nursing, she used her experience to advocate for ALK-positive patients and lung cancer patients. She now serves as president of the nonprofit ALK Positive, a support and advocacy group that helps prolong the lives of lung cancer patients and improve the quality of care.

She encourages people to trust their instincts if they think something is wrong with their health.” If people tell you you’re a hypochondriac, don’t give up,” she said. She also encourages those who have been diagnosed with cancer to seek genomic testing.” My husband and I had to advocate for biomarker testing,” she says.” The fact is, not all doctors know all the treatments and drugs available.”

Another goal is to change the face of lung cancer.” As soon as someone knows I have lung cancer, the first question they ask is if I smoke, and I never did. But it doesn’t matter how we got the disease. We have to find a way to treat it,” she said.” No one should have this disease, and I hope the doctors who misdiagnosed me know to look for it. Maybe we can find it at an earlier stage.”