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)
Amanda S., High-Grade Neuroendocrine Carcinoma, Stage 4
Symptoms: Breathing problems (especially during activities like walking), persistent cough, coughing up blood, urinary tract infections, pain in belly
Treatments: Chemotherapy, surgery
...
Bella J., Malignant Paraganglioma
Symptoms: Severe vomiting, chronic cough, dizziness, swelling in the neck, low heart rate, extreme weight loss, hair loss, dental issues, vocal strain, persistent pain and exhaustion
Treatments: Surgeries, radiotherapy, physical therapy
...
Burt R., Pancreatic Neuroendocrine Tumor (PNET) & Kidney Cancer
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers
Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled)
...
Jennifer P., Neuroendocrine Tumor, Stage 4, High-Grade
Symptom: Pain in upper back
Treatments: Chemotherapy, immunotherapy
...
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)
...
Gestational Trophoblastic
Caroline C., Gestational Trophoblastic Neoplasia & Placental Cancer, Stage 3
Symptoms: Morning sickness & an unusually high beta hCG
Treatment: EMACO chemotherapy
...