Rare Cancer Stories

Rare Cancer Stories

Fewer than 40,000 people are diagnosed with a rare cancer each year in the United States. Altogether they make up just over 25% of all cancers in the country (National Cancer Institute).

Explore below for stories from patients diagnosed with rare cancers. They describe first symptoms, going through different treatments and therapies, and navigating life with a rare cancer.

Neuroendocrine Tumors

A tumor that forms from cells that release hormones into the blood in response to a signal from the nervous system. Neuroendocrine tumors may make higher-than-normal amounts of hormones, which can cause many different symptoms. (NCI)

Jennifer Petersen, Neuroendocrine Tumor, Stage IV

Cancer details: Unknown site of origin, metastasis
1st Symptoms: Pain in upper back
Treatment: Chemotherapy, immunotherapy

Gestational Trophoblastic

Caroline Chisolm, Gestational Trophoblastic Neoplasia, Grade 3

Cancer Details: As a result of a molar pregnancy
1st Symptoms:
Morning sickness and an unusually high beta hCG
EMACO chemotherapy