The Tricky Business of Diagnosing Young Adult Cancer

We're supposed to be in the prime of our lives; we're not supposed to get sick. But my cancer was misdiagnosed for over a year, and all the while my disease progressed inside of me. Doctors must be more aware that young people can, and do, get cancer.
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I, like too many other young adults, have a cancer story.

I was diagnosed on Valentine's Day, 2007, just after my 22nd birthday. My senior year of college was derailed by having to leave school and move back into my childhood bedroom to undergo chemotherapy. Instead of finishing college, I faced a Stage III Hodgkin's Lymphoma diagnosis and the daunting task of accepting my mortality as a scared, confused young woman.

But my story doesn't start with my diagnosis; I had been sick for over a year before I received the news of my cancer on that not-so-sweet day in February. Beginning in the fall of 2005, I started to develop mysterious symptoms like abnormal fatigue, itchy skin, a nagging cough and swollen lymph nodes. Over the course of 2006, I saw various specialists in between my busy life as a student, working in Yellowstone National Park over the summer and spending the fall semester abroad on Oaxaca, Mexico. I guess that's one of the paradoxes of young adult cancer -- despite the disease, you still "have youth on your side." I had a laundry list of bizarre symptoms, yet somehow my stubbornness and youthful body were able to fight the disease just enough so I could function in my adventures.

But as the year went on, I got sicker, and each time I was near my hometown, to the doctors I went. My general practitioner accusingly suspected that I had been "partying too much," and simply advised me to "slow down" and "drink less alcohol and coffee." I saw a dermatologist for my itchy skin, but I didn't have a rash, so she was stumped. I left her office with a prescription for scabies cream and another for antihistamines. I visited a pulmonist for my cough and chest pain, and left his office with an asthma inhaler and an unconvincing hypothesis that I had "weak lung capacity." The list goes on.

I wasn't diagnosed with cancer until I checked myself into the emergency room on February 12, 2007 with chest pain so severe that I begged for an X-ray. While the news of my cancer was certainly the worst-case scenario I could have imagined, it was also a relief of sorts. I finally knew the source of my illness and thus, could begin to attack it back.

My story highlights one of the key challenges young adult cancer patients face: a lack of awareness that contributes to misdiagnoses. When a 21-year-old complains to a doctor of fatigue and indigestion, it's easy to dismiss the symptoms, and when I think back now on how I was accused of having an STD or being a binge drinker, I still shake my head in disbelief.

However, I don't fault any of my doctors for confusing my cancer with a hangover. Despite my serious ailments, even I'll admit that I probably looked deceptively healthy. And that's exactly the point: because young adult cancers are not on most doctors' "radar," it's more likely that young adults will go longer periods of times without a diagnosis, or -- arguably worse -- misdiagnosed. Doctors must be more aware that young people can, and do, get cancer. I was seeing doctors with complaints of painful swollen lymph nodes and fatigue -- telltale signs of Lymphoma -- yet not one of them thought to test me for the disease.

Indeed, it's a tricky situation; despite the founded criticism of how over-medicated our society is today, doctors really do walk a fine line between over reacting to and dismissing certain symptoms. And there's nowhere where this line is blurrier than when it comes to young adults. We're supposed to be in the prime of our lives; we're not supposed to get sick like that.

And I don't doubt that despite my serious complaints, I looked like a malnourished, hung-over 21-year-old each time I saw a doctor. What's important is that doctors are listening to patients' complaints carefully, and that they are educated about the warning signs of cancer.

No matter how old the patient is, catching cancer early maximizes the effectiveness of treatments and thus, is critical. Each time I tell someone how I was diagnosed, I'm reminded of how vital young adult cancer awareness really is. My cancer was misdiagnosed for over a year, and all the while my disease progressed inside of me. Yet, I consider myself lucky. Hodgkin's disease is one of the most curable cancers; there's a "protocol" treatment that cures the majority of cases, and every day I feel indescribably thankful for that. However, this isn't the case for so many other young adult cancers, which is where awareness comes into play in a lifesaving way.

Jacqueline Burton writes a blog at www.jacquelineburton.com.

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