The American Cancer Society estimates that just over 12,000 new cases of cervical cancer will be diagnosed in the US in 2014.  Less than 2% of cases, between 100 and 250 of these women, less than 2% will learn they have a high grade neuroendocrine tumor (NET). Compared with the more common squamous cell or adenocarcinoma cervical cancers, which collectively account for 98% of cervical cancer cases, neuroendocrine carcinoma is more difficult to detect, grows much more rapidly, is harder to treat and carries a much less favorable prognosis.

There are several types of NETs, and terms such as “high-grade” or “poorly differentiated” are used to describe the rare and aggressive form of cervical cancers that are the focus of DamnCancer.*  The high-grade designation refers to how these tumors act – they grow very quickly and have a tendency to spread to other organs within the body.  These aggressive NETs are called poorly differentiated because they look very different from the surrounding tissue when viewed under a microscope. High-grade (or poorly differentiated) NETs, while still quite rare, are more commonly found in other parts of the body, such as the pancreas, the gastrointestinal tract and the lungs. Low-grade, well differentiated NETs, also called carcinoids, may be either benign or part of a chronic condition one can live with for many years.

Of the <2% of cervical cancers made up of high-grade (or poorly differentiated) neuroendocrine tumors, most cases are Small Cell Cervical Cancer (abbreviated throughout this website as SCCC), with the remainder being Large Cell Cervical Cancer.  The names are based once again on how the cancer cells look under a microscope, and while their appearances differ, they behave and therefore are treated similarly.

The vast majority of cervical cancers have a proven cause: Human Papilloma Virus (HPV), the most common sexually transmitted infection present in about 79 million Americans, according to the Centers for Disease Control and Prevention. There is no proven link between HPV and Small or Large Cell Cervical Cancer.

SCCC is so rare that there is no standard treatment protocol.  Oncologists treating both Neuroendocrine Small Cell and Large Cell Cervical Cancers draw from the treatments used for small cell lung cancer. SCCC is often treated with a combination of surgery, radiation and chemotherapy, with much variation among individual patients. Research to help collect and analyze data on treatments being used and their outcomes is critical to finding effective therapies that save lives. One of the few studies conducted to track survival rates for SCCC patients found that the 5-year survival rate among those diagnosed in early stages (Stages I-IIA) was 37%, compared with only 9% for those diagnosed at Stages IIB-IV.

*Well-differentiated, low-grade or moderate-grade NETs are also called Carcinoids.  These tumors grow more slowly, and patients can manage this type of cancer as a chronic illness.  DamnCancer’s mission is to raise awareness and provide education about the aggressive high-grade NET’s found in the cervix.

Well-differentiated1. Chen, J., O.K. Macdonald, and D.K. Gaffney, Incidence, mortality, and prognostic factors of small cell carcinoma of the cervix. Obstet Gynecol, 2008. 111(6): p. 1394-402.