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)

Drea E. stage 3 neuroendocrine tumor

Drea E., Gastric Neuroendocrine Tumor (gNET), Stage 3, Grade 1



Symptoms: Fainting spells, fatigue, dizziness, anemia, shortness of breath, absence of menstruation, unexplained weight loss, night sweats
Treatment: Surgery (total gastrectomy with a Roux-en-Y reconstruction)
...
Haley M. neuroendocrine pancreatic cancer

Haley M., Pancreatic Neuroendocrine Tumor (pNET)



Symptom: Persistent digestive issues
Treatment: Surgery (pancreaticoduodenectomy or Whipple procedure)
...
Jonathan P.

Jonathan P., Mediastinal Paraganglioma, Stage 4



Symptoms: Shortness of breath, facial and neck swelling, vein distension, dizziness and fainting, blacking out after standing up

Treatments: Radiation (external beam radiation therapy), targeted therapy, surgery (cement injection for spinal stabilization)

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Amanda S. square headshot

Amanda S., Neuroendocrine Carcinoma, Stage 4, High-Grade



Symptoms: Breathing problems (especially during activities like walking), persistent cough, coughing up blood, urinary tract infections, pain in belly

Treatments: Chemotherapy, surgery
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Gestational Trophoblastic


Caroline C., Gestational Trophoblastic Neoplasia & Placental Cancer, Stage 3



Symptoms: Morning sickness & an unusually high beta hCG

Treatment: EMACO chemotherapy
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Shannon W. choriocarcinoma

Shannon W., Choriocarcinoma



Symptoms: Molar pregnancy, vaginal bleeding, overall feeling of unwell, cramping, weight loss, elevated HCG level, feeling bloated
Treatments: Chemotherapy, surgeries (D&C, total hysterectomy)
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