Earlier diagnosis, better prognosis: increasing awareness for neuroendocrine tumor (NET) cancers

Though less common than other cancers, neuroendocrine tumors, or NET, are a type of cancer that is increasing. In 2004, NET cancer was diagnosed in approximately five of 100,000 people and the incidence of NET has quadrupled over the past 30 years. To raise awareness of this cancer, Nov. 10 was declared Worldwide NET Cancer Awareness Day (WNCAD) by leading members of the NET patient advocacy community.

There are many kinds of NET that can occur throughout the body; however, most are found in the pancreas, gastrointestinal (GI) tract and lungs. Neuroendocrine tumors originating in the pancreas are called pancreatic NET. Pancreatic NET arise from endocrine pancreas cells, which produce several kinds of hormones and cluster together in many small groups, or islets, throughout the pancreas.

Thorvardur R. Halfdanarson, MD, a specialist in treating pancreatic NET at University of Iowa Hospitals and Clinics, emphasizes the importance of early diagnosis. “More patients are being diagnosed with NET each year. More specifically, in pancreatic NET, most patients have advanced disease at the time of diagnosis, making it more difficult to manage.” Dr. Halfdanarson encourages patients to be aware of potential symptoms, and to work with their physician to rule out a NET as early as possible.

Pancreatic NET can be categorized as either symptomatic or asymptomatic, also known as functional or nonfunctional. Nonfunctional pancreatic NET can be difficult to diagnose because sometimes the tumors may grow for a long time without causing symptoms. Nonfunctional tumors may grow large or spread to other parts of the body before causing symptoms such as indigestion or diarrhea. Symptoms of functional pancreatic NET include but are not limited to, stomach ulcers, skin rashes, episodes of low blood sugar and diarrhea. Pancreatic NET is different from, and commonly mistaken for, pancreatic exocrine cancer, which is generally referred to as pancreatic cancer. According to the most recent data, pancreatic NET were diagnosed in more than three cases per million annually. People with a family history of cancer, and those with diabetes mellitus seem to have an increased risk of developing pancreatic NET.

Less common cancers like NET pose many challenges for detection and diagnosis. Symptoms associated with NET are relatively vague, meaning it is difficult to diagnose, and as a result, the estimated time to diagnosis is five to seven years. Because NET cancers are often diagnosed at an advanced stage, when a diagnosis has been made, the cancer has often already spread to other parts of the body.

The management of NET depends on the size and location of the cancer, whether the cancer has spread to other parts of the body and the patient’s overall health. Current therapeutic options include surgery, radiation therapy, chemotherapy and medical therapies.

Given this, it’s helpful to know programs are underway to help raise awareness of NET, including pancreatic NET, and to ensure patients have available resources.

“Living with a less common cancer like NET can be difficult for patients given the lack of resources and a limited network of people who understand what they are going through,” says Dr. Halfdanarson. “Initiatives like Worldwide NET Cancer Awareness Day were created so patients and caregivers know they are not alone in this, and support is available.”

For more information on NET, visit www.thenetalliance.com. Initiated by Novartis Oncology, The NET Alliance is a program that strives to increase disease awareness and understanding, improve NET diagnosis and monitoring, support the development of new NET management techniques and foster patient-focused activities.