The definition of what constitutes a rare cancer comes from the Rare Disease Act of 2002 (HR4013) that attributes the number of people suffering from the condition to less than 200,000 people in the United States.
Lists of rare cancers developed by the federal government’s National Cancer Institute include 100 cancer-related diseases. Rare cancer research occurs less often than those for other cancers that affect a large portion of the population. The Rare Cancer Alliance is working to bring more awareness to government and medical communities and encourage more research into rare cancers.
For information and lists of rare cancers, the National Cancer Institute has published the Surveillance Epidemiology and End Results, SEER Survival Monograph that identifies rare cancers and the survival rates attributed to each specific cancer.
The list includes cancers of the urinary system such as papillary transitional cell, eye and orbit melanoma, cancers involving the endocrine system; thymus, adrenal, parathyroid and pituitary. Myeloma and unknown primary site cancers represent the largest number of rare cancers. Rare male genital cancers include those of the penis and scrotum, and breast. Some cancers attach female genital ligaments. There are rare skin cancers that attack the sweat glands
Phechromocytoma cancer cells usually begin in the adrenal gland in the chromaffin cells. It can also start in the bladder and heart.
Carcinomas of unknown primary (CUP) do not have any known origin. It occurs in less than four percent of patients.
Li-Fraumeni Syndrome is a pre-disposition to cancers of soft tissue. People with the mutation have a 25 fold increase by the time they are 50 years of age.
Malignant rhabdoid tumors (MRTs) are a very rare malignancy in children. The mean age is 3.5 years and it attacks boys and girls equally. Tumors are very aggressive, attacking the central nervous system and kidneys.
Esthesioneuroblastoma is a rare cancer found in adolecesant boys more than girls. It is usually found in the nose or throat. It can occur in the eyes, front of the brain and sinus. Metastasis does not usually occur.
Cancer of the stomach is very rare in children. Symptoms are vague because they can mimic other aliments such as nausea, stomach pain, poor appetite and weakness. In many cases the only sign is anemia before metastasis.
Desmoplastic small round cell tumor is another childhood cancer. It is found in the abdomen. It can eventually involve all of the organs in the chest and abdomen. The condition affects males; children and young adults.
For a complete list of rare cancers check the National Cancer Institute website. More lists of rare cancers are at Rare Cancer Alliance, and Ed Everest’s Guide to the World’s Best Cancer Websites.
National Cancer Institute Seer Survival Monograph: Cancers of Rare Sites
Cancer Index: Rare Cancers and Related Disorders
Ed Everest’s Guide to the World’s Best Cancer Websites
Rare Cancer Alliance