Patients Frustrated By Lack Of Information On Neuroendocrine Tumors

While most people are familiar with breast, prostate, lung and colon cancer, few have heard about the dangers neuroendocrine tumors pose. After all, with only about five out every 100,000 Americans affected by this disease, the frequency of its diagnosis hasn’t exactly put it in the spotlight. The low frequency rate, however, is seen as a double-edged sword by those who do suffer from the disease.

A recent survey targeting people being treated for neuroendocrine tumors in the United States revealed patient frustration related to a lack of overall information related to the disease. Many patients, for example, reported difficulty obtaining a diagnosis, issues related to a lack of information and support, and concerns their doctors were relatively uninformed about the disease. Many patients reported it took more than five years for them to receive a diagnosis and most patients had to see at least three doctors to obtain that diagnosis in the first place.

Neuroendocrine tumors are those than begin in the body’s hormone-producing cells within the neuroendocrine system. They can be found in such organs as the gastrointestinal track and lungs. There are several different types of tumors that can form, including Merkel cell cancer, which is an especially aggressive form of the disease. Symptoms related to neuroendocrine tumors may vary based on the type of cancer involved. This, along with the fact that symptoms tend to be vague, can complicate diagnosis.

While neuroendocrine tumors remain rare in all forms, they are climbing in the frequency of diagnosis. With this in mind, researchers are urging medical professionals to brush up on the topic. They also urge healthcare professionals to make certain they are using all available resources to inform patients about treatment options that are appropriate in their unique cases.

Patients who are diagnosed with neuroendocrine tumors should discuss all their options with their healthcare providers. If concerns about lack of information are present, there are some support organizations available to assist, including the Neuroendocrine Cancer Awareness Network.