Neuroendocrine tumors (NETs) are an unusual set of malignancies that affect patients of all ages, races, and backgrounds. The tumors are difficult to diagnose and can cause many unusual symptoms which lead to improper diagnosis.
Overall physician knowledge is limited or inaccurate, and there is a need for education and communication among other medical professionals necessary to diagnose and treat NET.
We believe a better standard of care in the treatment of NET is needed. Technology is limited or unavailable in the United States, while treatments are standard in European countries.
Neuroendocrine cancer often traverses other multiple specialty diseases so the diagnosis can be confusing and erroneous. This disease requires the skills of many specialty medical fields, including: surgery, oncology, endocrinology, gastroenterology, radiology, nuclear medicine, pathology, general medicine, pulmonology, and radiation oncology, and even pediatricians.
Patients are uninformed and frustrated by a lack of answers or confusing recommendations from multiple physicians. Therefore, NET continues to be the “mystery disease”.
The fact is that neuroendocrine cancer can be one of the most easily treated cancers, and patients can be managed to live long and productive lives. Outreach and education are critical. While several organizations provide patients with important education and information, and recommend physicians, there is no non-profit specifically raising money to advocate for a new standard of care NET patients deserve.
The Healing NET Foundation has a mission to change that.
The Healing NET Foundation was founded by individuals with a common desire to bring neuroendocrine cancer from the obscurity of the “cancer that Steve Jobs had” to a level of understanding that neuroendocrine tumors are very treatable forms of cancer; many patients can live long lives of high quality. We understand it first-hand, as physicians or as patients.