More than 200,000 new cases of rare cancers expected in 2018

Each year, American Cancer Society researchers include a special section in Cancer Facts & Figures highlighting an issue of cancer research or care. This year, the topic is rare cancers in adults. Rare cancers can be especially challenging for patients and healthcare providers because they are typically harder to research and diagnose. This often means that fewer treatment options are available, and the information is harder to find.

For this report, the researchers defined rare cancers as those with fewer than 6 cases per 100,000 people per year. They included testicular cancer, even though its incident rate is 7.2 per 100,000 because it is often considered rare cancer. They excluded others – including leukemia subtypes, Hodgkin lymphoma, and cancers of the oral cavity and pharynx – because they are described in detail elsewhere in the report.

The special section provides incidence and mortality rates for 28 rare cancers in adults ages 20 and older in the US. It also includes an overview of symptoms and risk factors for a subset of these cancers – those of the small intestine, anus, gallbladder, larynx, nasopharynx, nose and nasal cavity, vulva, vagina, penis, bone (including osteosarcoma), soft tissue, and eye, as well as testicular cancer, breast cancer in men, mesothelioma, and Kaposi sarcoma.

Approximately 208,000 new cases of rare cancer are expected to be diagnosed in 2017, not including the 8,850 estimated new cases of testicular cancer.

In recent years, national and international collaborations have formed to address some of the challenges associated with rare diseases, including rare cancers. In 2013, the National Cancer Institute launched the Rare Tumors Initiative, a collaboration of scientists, advocates, and industry experts with the goal of advancing research and treatment for rare cancers. In addition, one of the goals of the 2014 transformation of the National Cancer Institute’s clinical trial program (National Clinical Trials Network) is to improve the care of patients with rare and molecularly defined cancers.


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