Paying it Forward: Trials Can Improve Life for Future Cancer Survivors

 

 

 By participating in survivorship clinical trials, those who have weathered cancer can improve quality of life — not just for themselves, but for future survivors. 

MICKEY GOODMAN
PUBLISHED: MAY 18, 2016
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Professional singer Nicholle “Nikki Jean” Leary of Los Angeles had just finished a nationwide tour with Kanye West, Rihanna, N.E.R.D. and Lupe Fiasco in 2008 when she discovered a lump in her throat.

“The last thing I needed was trouble with my vocal cords,” she says. Her doctor found an enlarged thyroid and a number of nodules, but since none of them appeared malignant, Leary wasn’t treated.

Four years later, though, she developed symptoms — hoarseness, difficulty swallowing and reflux that impacted her voice and could possibly have derailed her career. Not only had Leary’s thyroid gland become even more enlarged, but the nodules now numbered 40.

In 5 percent of cases, these kinds of nodules are found to be thyroid cancer. Luckily, that wasn’t the case for Leary. But whether a patient is facing thyroid cancer or strictly symptoms that are interfering with daily life, the initial treatment tends to be the same — thyroidectomy. Leary knew that was a possibility, and she knew she needed an expert.

In an online search, she found Ralph P. Tufano, director of head and neck endocrine surgery and director of the Johns Hopkins Multidisciplinary Thyroid Tumor Center, who seemed especially concerned about preserving the voice when treating thyroid problems. “I immediately made an appointment,” Leary says.

During her research, Leary had learned that small nerves around the thyroid and vocal cords control voice pitch, but one in particular, the external branch of the superior laryngeal nerve, controls voice quality. “When I asked Dr. Tufano if there was some way to protect that nerve, his face lit up,” she says. “He told me he was pioneering a new surgical sensor specifically designed to save that ‘neglected nerve.’”

That was enough to convince Leary that Tufano should perform her thyroidectomy.

Prior to surgery, Tufano asked Leary if she would participate in a survivor clinical trial run by speech-language pathologist Heather Starmer to determine the success of the new technique, which involves the use of a laryngeal nerve-monitoring endotracheal tube. The trial consisted of completing voice-related quality-of-life forms, allowing detailed imaging of the vocal cords in action through a technique called videostroboscopy, and recording her voice before and after surgery. Leary readily agreed.

The post-surgical testing by Starmer showed favorable results and, sure enough, after a few months, Leary’s voice improved. Today, it’s stronger and better than prior to surgery, and she recently appeared with Lupe Fiasco on “The Tonight Show.” She attributes it all to her doctor. “Dr. Tufano saved my career,” says Leary, who refers to the doctor as her hero. “I hope other patients will benefit from the outcome of my surgery and clinical trial.”

SURVIVOR TRIALS

Ten to fifteen years ago, there was not a large enough body of cancer survivors to consider anything beyond saving lives. “Today, there are 14 million survivors and counting,” says Starmer, assistant professor and director of the Head and Neck Cancer Speech and Swallowing Rehabilitation Center at Stanford University School of Medicine. “We’re conducting survivor clinical trials to help patients deal with the mental and physical aftermath of surgery, chemotherapy and radiation.”



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