"I hope I'm not wasting your time," I said to my doctor.
I was speaking to the director of Interventional Pulmonology at Memorial Sloan Kettering Cancer Center, who was evaluating me for tracheomalacia -- a progressive softening of the trachea with limited treatment options -- and a poor prognosis.
I was hoping for a rule out.
Ten months earlier, on the eve of my 27th birthday, what I thought was my asthma had begun acting up. Wheezing and short of breath most days, I sought the treatment of an allergist. She prescribed inhaled steroids and a 3-5 year course of weekly allergy shots. I eagerly consented.
But the first drug I tried didn't relieve my symptoms -- nor the second, or third. My allergist upgraded my diagnosis from mild intermittent to mild persistent asthma. Sensing my frustration, she assured me that while she had some patients whom she really worried about, I was not one of them.
At a follow up appointment, I mentioned that I was waking up throughout the night short of breath. "I bet your PEAK flow is in the 200s then," she guessed. (PEAK flow is a routine test for asthma and assesses how much air you can quickly blow out of your lungs.)
"That's the odd thing," I explained, "it's always pretty high, around 450."
"You're a weird one," she concluded, dashing off another prescription.
Months passed without improvement. I canceled dinners with friends and contemplated taking a leave from work. I bought an expensive air filter and dust mite-proofed my bed.
Still no relief.
"Could it be something else?" I asked my allergist. I'd read that heart failure could cause wheezing. She listened to my heart and shook her head no.
Once she was out of town and my wheeze was bad, so I saw a primary care doctor.
He told me that wheezing was a common condition that shouldn't worry me. After a pep talk on managing anxiety, I left with a prescription for Xanax.
By February, my allergist had placed me on the highest dose of an inhaled steroid and bronchodilator (a medicine that opens the airways), as well as oral steroids.
But my wheeze was as loud as ever.
I knew that if I saw my allergist again, she would listen to my complaints for about 30 seconds before interrupting me and prescribing a stronger medicine, as she had done for the past six months.
So I consulted a pulmonologist instead. He ordered a chest X-ray, pulmonary function tests, and a methacholine challenge -- a test for allergic asthma.
I waited almost two months for the results. When the day of my follow-up appointment came, I joked with a coworker that it felt like Christmas.
"How are you feeling?" my pulmonologist asked at the appointment.
"Terrible," I said.
"Because your test results were all normal," he told me.
He speculated that I had vocal cord dysfunction -- which occurs when your vocal cords close over your airway when you are breathing in -- and referred me to an Ear, Nose, and Throat specialist, who sent me to a speech therapist for breathing exercises to calm my vocal cords.
The ENT thought my wheezing was self-limiting, meaning that it would go away on its own without treatment. Perhaps by coughing too hard, she explained, I was irritating my trachea. She drew a diagram and wrote "tracheomalacia".
I mentioned this possibility to my pulmonologist at a subsequent appointment. Then I coughed.
The melody that sounded from my lungs, loud enough to hear across the room, silenced us both.
"Are you making that happen?" he asked.
"No," I replied, my eyes pooling with months of misery.
He told me that tracheomalacia was rare and difficult to diagnose. He knew an expert in Cleveland, or I could try the head of pulmonology at New York University.
That night I scoured the Internet for an expert in tracheal disease in New York. The only person I found was the director of Interventional Pulmonology at Memorial Sloan Kettering Cancer Center, who also treated benign tracheal disease.
"It must be hard being here for the first time alone," a nurse remarked as we waited for an elevator on the day of my appointment there, several weeks later.
"Oh, no, I don't have cancer," I quickly explained, feeling guilty as I surveyed the seriously ill patients around me. Was I wasting the time of one of the world's top cancer diagnosticians because I was coughing too hard?
The doctor explained that to evaluate my trachea, I would need a CAT scan, which I underwent on a Friday night.
When I picked up the phone Monday morning and heard his voice, I knew it was a bad sign.
My trachea looked fine, he told me, but the CAT scan had shown a mass in my lung. "It could be a whole laundry list of things," he said, "but we always think of the possibility of cancer." But I had none of the risk factors for lung cancer -- I was a nonsmoker and in my twenties -- so it was unlikely.
I underwent a bronchoscopy later that week and he called after 7:00 p.m. on a Tuesday night with the biopsy results.
It was lung cancer.
The tumor was slow-growing and had been the source of my "asthma" over the past 12 years. Fortunately, the prognosis was good for this type of cancer, called carcinoid, but the treatment was grueling -- he removal of my right upper lung, a procedure known as a lobectomy.
Estimates vary, but anywhere from 15-44 percent of cancers are initially misdiagnosed. This means that thousands of people worldwide are currently living with a misdiagnosed cancer.
How can you avoid a misdiagnosis? Never ignore a symptom. Build a long-term relationship with an excellent primary care doctor and specialists who don't blow off your symptoms as anxiety. Don't accept any diagnosis without definitive tests, if they are available. Request copies of test results. Don't be afraid to ask questions. If a treatment doesn't seem to be working after the appropriate time, it's probably not.
I had my surgery in June of this year and have been told that my cancer is unlikely to come back. It's good news that I would have loved to hear years ago.
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