(ARA) – Nearly everyone in the U.S. has been affected by cancer in some way; whether you or someone in your immediate family or group of friends has been directly impacted by it, or a colleague or more distant friend or relative who battled or is battling the disease. However, while most people are aware of major cancer types like breast cancer, we cannot forget about the more rare cancers, which pose an increasing number of challenges for detection, diagnosis, prognosis, treatment and technology development given their low incidences.
Neuroendocrine tumors (NET) is one of these rare, but serious types of cancer. These tumors arise from cells that can produce and secrete a variety of hormones that regulate certain functions in the body. Recent data shows that in 2004, NET cancer was diagnosed in approximately five cases in 100,000 people. However, the incidence of NET is increasing dramatically, having increased more than five-fold in the past 30 years.
The symptoms of NET are often vague, like upset stomach, hot flashes or wheezing, and patients with NET are often misdiagnosed. In fact, it can take five to seven years for patients to receive an accurate diagnosis, when the disease may have progressed to advanced stages.
With improvements in screening and diagnostic tools, it is now easier to screen for NET. However, even among medical professionals there is limited knowledge and understanding of this rare and serious cancer.
Grace Mulligan from Miller Place, N.Y., experienced this firsthand. “I thought [my symptoms] had to do with menopause. I was getting hot flashes and fatigue and not feeling that great. My doctor would say ‘take soy and do this or do that’ and it didn’t work,” says Mulligan.
“I was sent to a gastroenterologist who did a scan on my abdomen and they found tumors in my liver,” Mulligan continued. “I must have had it for a long time; they say 10 or 15 years because the tumors were very large. I ended up going to see a specialist in carcinoid cancer. That really changed my life.”
To raise awareness of this rare disease, leading members of the NET patient advocacy community declared Nov. 10, 2010 the first Worldwide NET Cancer Awareness Day (www.netcancerday.org) (WNCAD).
“Our mission is to intensify awareness and to educate patients about NET cancers, including carcinoids,” says Maryann Wahmann, vice president of the Carcinoid Cancer Awareness Network and steering committee member for WNCAD. “We want patients to know that they are not alone in this and that there are survivors and we can get them through this.”
In support of WNCAD, people are encouraged throughout the year to sign the official WNCAD proclamation and learn more about NET cancer and WNCAD at www.netcancerday.org.
Please visit www.thenetalliance.com for more information on neuroendocrine tumors and the NET Alliance program, a Novartis Oncology initiative.
