What are NETs?

Neuroendocrine tumors (NETs) are rare cancers that are usually slow-growing and can be found in most any organ in the body but are most prevalent in the digestive system and the lungs. They grow from cells that release hormones in response to a signal from the nervous system. These tumors can secrete large amounts of these hormones which can cause a range of symptoms and syndromes.


People with carcinoid (the most well-known type of neuroendocrine tumor) are often misdiagnosed as having menopause, rosacea, irritable bowel syndrome, Crohn's disease, acid reflux, or asthma. Often, a combination of a  few simple blood and urine tests can accurately diagnose the disease, e.g., a 5-HIAA 24 hour urine or plasma test  and the chromogranin-A (CgA) blood test.                                                                                                   

There are a number of treatments available to patients  and research into new drugs is ongoing. No one treatment regimen can manage all patients at all stages of the disease. Surgery, if possible is the preferred initial intervention. Radiological intervention, biotherapies, clinical trials, chemotherapy, targeted therapies, and anti-tumor and anti-angiogenic agents are some of the treatment options.Carcinoid can only be cured if caught very early with surgical removal of the tumor, but most times it is diagnosed much later in the disease process. Your donations and grants from corporations and government agencies help fund valuable ongoing research to find a cure.

The Cinderella Story and The Principle of Managing NETs Therapy 

Cinderella has been given everything she could need to have a magical time at the ball and dance with the handsome prince. But, her fairy godmother has warned her that she must leave the ball before midnight. If she doesn't she will be left with rags instead of a ballgown and her carriage will turn into a pumpkin. She will no longer be able to dance with the prince. Doctors who treat these diseases can't make Cinderella into a real princess, but can only work with the fairy godmother to buy her time to dance with the handsome prince and enjoy life. They aim to achieve stability or reduction of tumor bulk. Everytime doctors prescribe medication or a procedure they aim to prevent forward progress which will allow Cinderella to dance with the prince for a longer time. As time progresses, tumors will progress at some point but the proper therapy in the proper sequence give Cinderella a longer life, sometimes even a normal life span. By the way, late to the ball is a metaphor for a late diagnosis which is common in the NET community, and can be more than 5 years.

​In Memory of our Friends -  Deb Kilmartin, Co-founder, PhillyNETs 

Melva Conquest, Natalie Tuttle, A.J. Catone, Shirley Jelinik, Bliss (Candy) Warner, Lynn Cohen             and David Keithley

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