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Pediatric Endocrine Tumor Program Provides Treatment for Rare Pediatric Cancer

CCH Newsletter - Summer 2011

By Lindsey Garner

Steven Waguespack, M.D., checks out his young 

Pediatric thyroid cancer is a rare disease with an incidence rate of one case diagnosed annually per million children. Kobe Black, diagnosed with pediatric thyroid cancer at the age of 4, was that one-in-a-million case.

Kobe was diagnosed in October 2008 with papillary thyroid cancer and a brain tumor in Kansas City, Mo., where physicians had never seen a case like his.

The treatment options presented to his parents, Brady and Brooke, were sparse and discouraging.

“We spent the day after his diagnosis praying for God’s direction,” Brooke says.

A referral to the Pediatric Endocrine Tumor Program at MD Anderson’s Children’s Cancer Hospital answered their prayers. A few days later, Kobe and his parents made the first of many trips to Houston.

Specialized care

Once at the Children’s Cancer Hospital, Kobe came under the care of Steven Waguespack, M.D., associate professor in the Department of Endocrine Neoplasia and Hormonal Disorders and the Division of Pediatrics, and an expert on endocrine tumors.

“We have one of the largest, if not the largest, practices for pediatric thyroid cancer in the nation,” Waguespack says. “Because these tumors are so rare, children benefit from receiving treatment at a specialty center like ours — where multiple specialists with extensive experience in managing such cancers can treat the patient. It potentially avoids long-term side effects and consequences from possible overzealous or inadequate treatment.”  

Scans and biopsies showed that Kobe’s cancer had metastasized to other locations in his body in addition to his brain, including his right adrenal gland, lungs, kidneys, hips and femurs. All of these are rare metastases, excluding the lungs.

Over three months, Kobe had three surgeries to remove his right adrenal gland, the brain tumor and the diseased thyroid and lymph nodes in his neck.

Less is sometimes more

Following his surgeries, Kobe received a dose of radioactive iodine (RAI) in February 2009 to destroy any remaining thyroid tissue and to fight the cancerous cells in his body.

RAI is prescribed for patients who have microscopic residual disease, distant metastases that concentrate RAI and/or a high risk of recurrence. However, this was not always the case.

“The standard response for thyroid cancer treatment in all cases used to be surgery to remove the thyroid and neck disease, followed by a dose of radioactive iodine,” Waguespack says. “Now, we incorporate the results from a diagnostic thyroid scan and tumor marker data to provide a more individualized approach to care. And, we always entering into careful discussion with the child’s family about whether or not to move forward with using radioactive iodine.”

Recently, published data have reaffirmed the excellent prognosis when thyroid cancer is diagnosed during childhood.

“The most recent data and our collective experience reassures me that children are unlikely to die from their thyroid cancer during childhood, even if metastatic at presentation,” Waguespack says. “Given the concern about the late effects of overzealous prescription of RAI for a disease that is not life-threatening, we now administer RAI only after carefully weighing the risks and benefits of treatment, the aggressiveness of the disease and its expected response to therapy.”

Careful consideration for administering RAI is especially important since high doses of RAI may be associated with an increased risk for secondary cancers.

Diagnostic studies six months later showed that Kobe responded well to the RAI. His tumor marker lowered and the cancerous lesions in his lungs, kidneys and bone reduced in size.

Due to the extent of his disease, an additional dose of RAI would eventually be needed, but Waguespack recommended a conservative RAI treatment approach.

“I wait at least a year, not six months as some older guidelines say, to reconsider RAI therapy in a child because I want to minimize the amount of radiation exposure as much as I can,” Waguespack says. “Also, it can take more than a year for the full effect of the first dose to be seen.”

Twenty months after his first treatment, Kobe received his second dose of RAI.

Anita Ying, M.D., works with Steven 
Waguespack, M.D., in the Department of 
Endocrine Neoplasia and Hormonal 
Disorders in the Division of Pediatrics.

Utopia for treating thyroid cancer

“I’m blessed. I realize that I work at a utopia for taking care of thyroid cancer,” Waguespack says. “We all work so well together — nuclear medicine, oncology, pathology, radiology and surgery, among others. Everyone who contributes to treatment has experience in managing endocrine tumors and helps provide cutting-edge clinical care to these young patients.”

Kobe’s case epitomizes the benefits of multidisciplinary care. The combination of his therapy and surgeries infinitely reduced the cancer in his body.

“He essentially had cancer from head to toe, and now it’s controlled in a few areas,” his mother says.

Kobe still has disease in his lungs, left kidney and right hip and femur. But he lives his life symptom-free and unaffected by therapy.

Now almost 7 years old, he is thriving in school, preparing to start his third season of soccer and a proud big brother to 1-year-old sister Khloe.

© 2015 The University of Texas MD Anderson Cancer Center