Rare Cancer Facts:

  • As a group, rare cancers are one of the leading causes of cancer deaths in the U.S. which number nearly 250,000 per year (2018 figures)

  • Many rare cancers are diagnosed in children, adolescents and young adults. Rare cancers account for over 70% of all diagnoses in patients younger than the age of 20.

  • Rare Cancers account for more than 25% of all new cancer diagnoses. 2018 figures from the Rare Cancer Research Foundation indicate there were more than 1.7 million new cases of cancer in the U.S. and of those nearly ½ a million were considered rare.

  • Nearly 60% of rare cancers are diagnosed in the advanced stages making the 5 year survival rate very poor.

  • According to The National Cancer Institute (NCI) more than 500 forms of rare cancers have been identified and defines “rare cancer’ as one in which there are fewer than 40,000 cases per year. Many rare cancers however have numbers lower than 5000 new cases per year.

  • Because rare cancers are so unusual, information on how to identify, stage or treat them is difficult. Many of these have very few clinical trials or funding for any type of research.

  • Finding Doctors that treat rare cancers can be difficult especially in more rural areas often leaving patients with fewer treatment options or huge amounts of travel expenses to facilities to be treated.

  • Pat’s rare cancer is called Adenoid Cystic Carcinoma. There are fewer than 1500 new cases per year and there is generally limited or no treatment available. Each case is typically unique to each patient.