Wellness: The Tumor Tour

A medical crisis can be the beginning of a life-changing journey.

Comments (2)
Thursday, December 01, 2011

For years, I unknowingly toted around a three-pound tumor, and no one gave me a second glance. But the moment surgeons removed the mass from my body, it began a collegiate tour that would put any high school valedictorian to shame. As the focus of high-level research, my tumor visited campuses like Harvard, Yale and Stanford.

Me? All I have is a thin, red scar stretching from between my breasts to just below my navel.

The medical crisis started in graduate school when some minor quirks became major signals. I hadn't menstruated in more than two years. And thick, dark hairs began cropping up all over my body. Once my sister tried to brush a dark hair off my face. When I yelped in pain, she explained that she thought the hair was a remnant from a makeup brush. I never wore shorts and avoided trips to the beach. I spent countless dollars on waxing, electrolysis and infomercial hair removal products.

At the age when most women begin to embrace their femininity, mine was disappearing. Dating was out of the question. With the black hair invasion, I was sure any guy would find my body as repulsive as I did—or at least too much like his own (hairy and without curves)!

While my best friend was taking the plunge and moving in with her beau, I was spending Saturday nights solo, fantasizing about a future life when I would be comfortable in my own skin. In the meantime, I covered up with oversized sweatshirts and baggy jeans—anything that would hide my boyish frame and the five o'clock shadow on my legs.

For years, doctors attributed my symptoms to Arabic ancestry, stress and insecurity. But after seeing my overgrown happy trail (a thick line of hair extending from my belly button to my nether regions), my gynecologist finally referred me to an endocrinologist. A standard blood test revealed hormone levels that were off the charts. My level of DHEA—a performance-boosting hormone sold over the counter at health food stores—was staggering, even by male standards. The average for a woman my age is between zero and 95. My count: 3,500. So in real world terms, I was pumped with more androgens than Arnold Schwarzenegger.

Concerned, the endocrinologist ordered more tests and eventually uncovered a melon-sized mass lodged inside my 100-pound frame. It was attached to my right adrenal gland, a little hormone-producing factory located near the kidneys. Thanks to the mysterious mass, my adrenal gland churned out male hormones at an alarming rate, destroying my femininity. At the time, fewer than 20 such tumors were documented in the world—and mine was the second largest. While I was honored to be world-renowned for something, I would have preferred a title like best breasts or biggest bank account.

"Because of the tumor's size, we may need to remove portions of your liver and kidney," warned the surgeon. "And there's a 50 percent chance you have cancer."

I didn't react the way they do in movies—quiet disbelief followed by horrified wails. Instead, I had a typical male reaction, no doubt due to the deluge of androgens circulating in my bloodstream. I was emotionally paralyzed, focusing instead on logistics. How would I complete my course work? Who was going to tell my family? Would my insurance cover the medical costs, or would I have to pay out of pocket?

Since I was being treated in a teaching hospital, my case served as training grounds for a troop of medical students. They pored over every inch of my naked body, closely inspecting what I'd desperately tried to hide. For someone typically clad in turtlenecks and long pants, this was horrifying. I wasn't able to completely detach from the experience, and I couldn't cover up and prevent myself from being exposed. So I just closed my eyes and pretended I was lying on a beach in Greece.

The morning of surgery I sat in the waiting room dressed in an ill-fitting hospital gown with slippers over my feet. Three hours later, I awoke to see 15 residents encircling my hospital bed, captivated by the girl who housed a mass the size of a Virginia ham in her stomach.

Compared to what the docs anticipated, the surgery was simple. My vital organs were displaced but remained intact. They stitched me up and sent pieces of my tumor to medical institutions across the country for cancer analysis. Then, a day after I was released from the hospital, the surgeon called and asked me to come in to review the results.

I entered the cold examination room with my sister, wanting desperately to hear, "You're in the clear." Instead I heard, "It's malignant," followed by, "You're 23—you don't want to meet the man of your dreams, fall in love and wonder if it's fair to marry him knowing you may not be around in three years." My sister and I exchanged looks of terror, trying to process the callous words of a doctor who took phenomenal care of me physically but left me emotionally devastated, gasping for air.

Two days later, the surgeon called again. It turned out the tumor wasn't malignant. It was "indeterminate." Pathologists use several criteria to determine whether a tumor is malignant (cancerous) or benign. Mine was benign on all counts—except for size. In some cases, it turns out size does matter. But even with the Virginia ham-sized mass, I didn't need additional treatment—no chemo (where I might lose my hair instead of getting more), no radiation, not even hormone therapy to jump-start my menstrual cycle. The saga was over.

In the months following the surgery, I anxiously awaited the return of my period following its three-year hiatus. I could feel my confidence level rising, and with the help of laser hair removal, I began to embrace my newly smooth legs and thighs. I even found myself flirting from time to time. Then, eight weeks after the surgery, Aunt Flow finally arrived. I dreaded the idea of a monthly bill, but at the same time, I was grateful for what it meant. My body had "righted" itself. That same week, a guy I met in college took me on a dream date to Catalina Island off the coast of Southern California. I felt attractive and desired; I even wore shorts!

While I've been tumor- and cancer-free for 12 years, I still suffer from periodic hormonal blips and their accompanying effects on my psyche. Any spike in the levels and my brain goes on overdrive—"Is it coming back? Will I be able to have children? Is that &*$?!# black hair on my belly?"

But now when I look in the mirror, I'm comfortable with my body. I see a scar and remnants of dark hair, but I also see the figure of petite woman who is finally comfortable in her own skin. My femininity has been restored. My menstrual cycle has returned to normal. My 34-As are now a full B cup! There's even the slim possibility that, since DHEA is dubbed the fountain of youth hormone, I've tacked a few years onto my life.

Today I'm a "healthy" medical mystery, diagnosed with an extremely rare "oncocytic adrenal neoplasm of indeterminate potential"—medical jargon for "You could have cancer, we just don't know yet." So I'll continue to pay hundreds of dollars for follow-up lab tests and scans, and my tumor may still lurk around the Ivy League.

But the experience has forever changed me. Now I'm embracing my femininity—and my B cups—the way most women do when they're 23!

Amy Paturel is a health writer in Los Angeles and a columnist for AOL's Diet and Fitness Channels. She holds master's degrees in nutrition and public health from Tufts University in Boston.

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Wow, you were extremely lucky although those words may seem woefully inacurate to describe what you went through. I am speaking solely of the diagnosis of "not Cancer" or specifically, not "Adrenal Cortical Carcinoma" for which there is no cure, a poor prognosis and sadly limited research or funding for research as this "Ultra Rare Orphan Disease" affects too few individuals yearly to make it profitable for Phamecutical Companies to invest in research for treatment. The one in a million people diagnosed each year are numbers considered too low for the National Institute of Health to divest money away from the ten most common cancers in the US. They choose to focus on dedicating the 5 billion spent on research each year to the cancers that have the most numbers associated with them, which leaves the 200+ other "less popular" cancer patients orphans. Through sadly lacking diagnosis you survived. You are very fortunate in a world where more than a third of the people diagnosed with cancer do not survive and those are US states, it is a much lower survival rate world-wide, you were very fortunate!

Posted by Anna Raven on 11.29.11 at 15:20

Hi Amy: I am a registered nurse, one of the women's health experts on beinggirl.com and write a blog focussed on women's health, teens and periods. Just want to say that yours is a really important article, as it will give women who don't have periods a reason to see their health care provider to get checked out. I recently posted a relevent blog titled: "The Menstrual Cycle is a Vital Sign". The point of the post was to inform about the importance of menstrual cycles and not to dismiss it if you aren't having one, as it could be a sign of primary ovarian insufficiency. The link to the post is below.

http://www.blogher.com/%E2%80%9C-menstrual-cycle-vital-sign%E2%80%9D

Glad you are doing so well and grateful that you shared your story to help others.

Elaine Plummer

Posted by ElaineR.N. on 11.30.11 at 16:59
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