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Cheyenne Dickerson | Jun 15, 2017

Rare cancers harder to research or treat, American Cancer Society says

Rare cancer, found in 1 of 5 individuals in a pool of 100,000, is more common among children and poses more challenges to treat and study, the American Cancer Society said on its website. 

"Rare cancers account for most of the diagnoses (71 percent) in those younger than 20, and 39 percent of the diagnoses in those ages 20 to 39," Stacy Simon, senior editor for the American Cancer Society, wrote in the posting. "Rare cancers accounted for about 17 to 20 percent of cancers diagnosed in adults ages 40 and older," she said.

While rare cancers, those diagnosed in less than six cases per 100,000 per year, are present in children more often, they surprisingly have higher survival rates than that of adults, the article said. Young adults on average have an 80 percent survival rate, opposed to adults over 40 who have a 60 percent chance of survival. 

“Cancer is always difficult, but being diagnosed with a rare cancer presents additional challenges,” Carol DeSantis, lead investigator of the report and American Cancer Society director of breast and gynecological cancer surveillance, intramural research, said in the posting. “It’s challenging for patients and their families to find information and support when the doctor is uncertain what kind of cancer you have.”

With rare cancers, there are also limited studies and research completed because of the lack of participants available for test trials. The National Clinical Trials Network has been studying rare cancers since 2014. In addition, the U.S., Europe, and Canada have been working together since 2011 to research rare cancers and provide research for medical doctors and specialists. 

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