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posted: 9/22/2014 5:30 AM

'Superstar' patient from Naperville healthy 6 years after tumor removal

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  • Annie Wang, 22, of Naperville, has graduated college and kept a clean bill of health six years after having surgery to remove a rare brain tumor called a chordoma. The tumors often return for most patients, and the fact that Wang's hasn't bodes well for her future, her doctors say.

    Annie Wang, 22, of Naperville, has graduated college and kept a clean bill of health six years after having surgery to remove a rare brain tumor called a chordoma. The tumors often return for most patients, and the fact that Wang's hasn't bodes well for her future, her doctors say.
    Courtesy of Sarah Xu

  • A scan of Annie Wang's brain before she had surgery in 2008 to remove a tumor called a chordoma shows the location of the golf ball-sized tumor at her brainstem. Doctors removed the tumor through her nose in a type of procedure that was relatively new at the time.

    A scan of Annie Wang's brain before she had surgery in 2008 to remove a tumor called a chordoma shows the location of the golf ball-sized tumor at her brainstem. Doctors removed the tumor through her nose in a type of procedure that was relatively new at the time.
    Courtesy of Northwestern Memorial Hospital

  • A scan of Annie Wang's brain taken recently at her six-year post-surgery appointment shows a rare tumor she had called a chordoma has not returned.

    A scan of Annie Wang's brain taken recently at her six-year post-surgery appointment shows a rare tumor she had called a chordoma has not returned.
    Courtesy of Northwestern Memorial Hospital

  • Annie Wang, left, visits Stonehenge while studying abroad in Europe during her junior year at Wellesley College. Wang, who grew up in Naperville, recently celebrated six years tumor-free after having surgery when she was 16 to remove a rare brain tumor called a chordoma.

    Annie Wang, left, visits Stonehenge while studying abroad in Europe during her junior year at Wellesley College. Wang, who grew up in Naperville, recently celebrated six years tumor-free after having surgery when she was 16 to remove a rare brain tumor called a chordoma.
    Courtesy of Annie Wang

  • Annie Wang of Naperville, left, participates in the Hoop Rolling tradition while attending Wellesley College. Wang recently graduated, six years after having a rare brain tumor called a chordoma removed.

    Annie Wang of Naperville, left, participates in the Hoop Rolling tradition while attending Wellesley College. Wang recently graduated, six years after having a rare brain tumor called a chordoma removed.
    Courtesy of Annie Wang

 
 

Annie Wang felt like she was on an episode of "House"

The medical show in which every patient has some exceedingly rare condition that's stumped handfuls of doctors until it catches the attention of diagnostic genius Gregory House seemed to fit her situation.

The Naperville native awoke on her 16th birthday in 2008 to blurred vision, blurry enough to immediately schedule an eye doctor appointment.

But the problem wasn't in her eyes, and several specialists couldn't figure it out.

"Of course this would be something that happens to me," said Wang, now 22 and a college graduate without any sign of the condition that threatened her life six years ago.

Eventually, doctors determined it was a neurological problem -- something in the brain. And that directed the Naperville teen to the two doctors who would play "House" in her life: Dr. James Chandler and Dr. Robert Kern at Northwestern Memorial Hospital in Chicago.

The condition they diagnosed was serious, but to 16-year-old Annie, having an answer was a relief.

"At the time I was like, 'Oh, thank God I don't have to go to any more doctor's appointments to try to figure out what this is now,'" she said. "I just didn't process it as being a super big deal, although it was."

The doctors found a tumor the size of a golf ball. And it was pressing against her brain stem, which Dr. Chandler called "the most critical area of the brain." It was compressing some of the nerves that control eye movement, creating her blurred vision. The tumor was called a chordoma and it had to go.

Not 'disfiguring'

A chordoma is a rare type of cancer that occurs in the bones of the skull and spine. Chandler said doctors don't know exactly why Wang developed one. The tumors usually originate when the embryo is forming but begin to grow later, and they only occur in roughly 300 patients in the U.S. each year, he said.

Removing such a tumor, located at the critical base of the skull, usually requires doctors to split open a patient's face, Dr. Kern said. And that wouldn't be pretty.

"In the past these kind of diagnoses were problematic," Kern said. "In order to get access, we would have had to make disfiguring facial incisions and open up the whole cranial cavity."

But when Wang's case reached them, Kern and Chandler recently had begun working together on a new endoscopic procedure to access and remove brain tumors through the nose.

Kern, who is chairman of otolaryngology at Northwestern Memorial Hospital, is the guy who tunnels through the nose to create access to the tumor.

Chandler, who is surgical director of neuro-oncology at Northwestern Memorial, is the brain surgeon who uses a 2D image created by Kern's scope to detach the tumor from surrounding healthy brain and bone tissue and pull it out through the nose, piece by piece.

"The two of us worked together to reconstruct the base of her skull," Chandler said.

Although the procedure was relatively new at the time, Wang said her doctors explained it in an honest and forthright manner, and with confidence.

"I took it in stride and didn't think of it as a very serious thing," Wang said.

Wang said her parents surely were more scared than they let on, but they showed outward confidence and plenty of support. So she planned to take two weeks off from the beginning of her junior year at Naperville North High School to take the tumor out of her life.

'No deficits'

Wang says she was back at school only a couple of days after having the tumor removed, surprising her friends and her doctors. It was time to prepare for the SAT so she could get into Wellesley College, the private women's liberal arts college in Massachusetts she had been eyeing for quite a while. So there really wasn't any time to lose.

She remembers her nose bleeding off and on for about a month from "normal discharge" after the surgery, and she had to take antibiotics for a while. There was pain for a while, too, but that helped change her perspective on the drama and worries teens often face.

"Having to go through life with a handicap, regardless of how minor it is, really makes you appreciate all the privileges you have in being able-bodied," Wang said. "I think I came out of it a much more mature person. A lot of the things that would have bothered me as a teenager no longer did because it was like, 'At least it's not as bad as brain surgery.'"

Wang's doctors say she has "no deficits," no lasting effects from the surgery. No medications she must take and nothing she must do. Even better, she hasn't shown any signs of the tumor recurring, which Chandler said is rare with a chordoma.

Prognosis? 'Great'

The median survival time for chordoma patients is seven years, Chandler said. So when Wang recently visited the hospital for her six-year post-surgery checkup and again showed no signs of tumor growth, doctors saw that as a great sign.

"At her recent visit, she looked great, felt great and there was no evidence of any recurrence of her tumor," Chandler said.

Instead, there was continued evidence of the college graduate's "gregarious," "ebullient" personality.

With each year that passes without any recurrence, doctors say the chances of the tumor ever causing Wang problems again become slimmer and slimmer.

Wang said the chordoma experience has been a positive one, strangely enough, and one that has made her stronger to face her current challenge: finding a job in an employment market that's "not good for anyone."

She recently moved to the San Francisco area, where she is hoping to break into the startup business world in media and design, using her degree in art history and cinema and media studies. She'd also like to return to graduate school to study film theory or filmmaking.

Wang said she'd love to work in academia someday, which explains the advice she has for future patients diagnosed with rare disorders: conduct plenty of research and maintain open communication with doctors.

"Think of your condition not as a terminal one, but as a growing experience," Wang said. "Stay positive and rely on your support networks."

Wang's sunny outlook in the face of a rare and dangerous tumor makes her one of Chandler's "superstar" patients, he said.

"She's just a delightful and impressively courageous young woman and has been since she was 16 years old," Chandler said. "When faced with major brain surgery at 16 and you can put a smile on your face and say 'let's do it,' you're a superstar in my book."

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