Statistics and Clinical Trials
"How many people have neuroendocrine cancer?" is a frequently asked question. Incidence and prevalence are two important terms used to describe the occurrence of a disease in a population. Both incidence and prevalence of neuroendocrine cancer is increasing in the United States.
Incidence refers to the number of new cases of a disease that occur in a population over a specific period of time. It is usually expressed as a rate or a percentage of the population. Overall, it is estimated that more than 12,000 people in the United States are diagnosed with neuroendocrine cancer each year. The number of people diagnosed with neuroendocrine cancer has been increasing for years. Annual age-adjusted incidence of neuroendocrine cancer was 1.09 per 100,000 persons in 1973 and 6.98 per 100,000 persons in 2012. Rising incidence may be because of greater detection of early-stage disease, with improved imaging techniques and universal use of staging and grading classifications.
Prevalence refers to the total number of cases of a disease that exist in a population at a specific point in time. Overall, it is estimated that approximately 171,000 people are living with the neuroendocrine cancer. The number of people diagnosed with this type of tumor has been increasing for years. As with the incidence, a similar trend is seen in the prevalence of neuroendocrine cancer, with 20-year limited-duration prevalence increasing from 0.006% in 1993 to 0.048% in 2012. Increased prevalence is likely because of improvement in systemic therapies and improved survival over time.
"What is the survival rate for neuroendocrine cancer?" is another frequently asked question. There are different types of statistics that can help evaluate a person’s chance of recovery from neuroendocrine cancer. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having a tumor may affect life expectancy. Relative survival rate looks at how likely people with neuroendocrine cancer are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this tumor.
The five-year overall survival (OS) rates for neuroendocrine cancer varies based on several factors. These include the stage and grade of the tumor(s), a patient's general health and age at the time of diagnosis, how well the treatment type works, the type of neuroendocrine cancer, and whether tumors can be surgically removed. The Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute provides data on cancer incidence, prevalence, and survival outcomes in the United States. These data were incorporated into a study published in Journal of the American Medical Association (JAMA) Oncology which indicates both the incidence and prevalence of neuroendocrine tumors are increasing in the United States, owing to increased diagnosis of early-stage tumors. The study also reports that survival for all neuroendocrine cancer patients has improved, especially for distant-stage gastrointestinal and pancreatic NETs. The median overall survival time for all neuroendocrine patients was 9.3 years (112 months). Patients with localized tumors--those that have not spread beyond their original location--had better median OS (>30 years) compared with regional NETs (10.2 years) and distant NETs (12 months). Of those patients with known grades, G1 NETs had the highest median OS (16.2 years) among grade groups, G2 NETs had OS of 8.3 years), and G3 and G4 NETs had an OS of 10 months). Neuroendocrine cancer in the rectum (24.6 years) and appendix (>30.0 years) had the best median OS among site groups, while NETs in the pancreas (3.6 years) and lung (5.5 years) had the lowest median OS.
Clinical Trials for Neuroendocrine Cancer
Researchers constantly seek improved ways to care for neuroendocrine cancer patients. Scientific advances are usually accomplished through studies with volunteers, called clinical trials. Clinical trials are used for all types and stages of neuroendocrine cancer. Many focus on new treatments to learn if it is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials. Clinical trials can involve drugs as well as diagnostic tools. Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment.
People who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work.
Deciding to join a clinical trial
People decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in cancer treatment. Even if they do not benefit directly from the clinical trial, their participation may benefit future neuroendocrine cancer patients.
Information about some current clinical trials is available here.