“What do you mean you won’t take my money?”
“I’m sorry ma’am, but there is no research being done for Small Cell Cervical Cancer. We don’t even have any information about it, so your money wouldn’t go towards that particular cancer.”
Jen Dunmoyer was diagnosed with Small Cell Cervical Cancer at age 34 in July of 2010. When her sister, Jessica, wanted to do something to help – find information about Jen’s illness or learn about research being conducted to save women like her sister suffering from the disease – she came up empty handed. She contacted organization after organization but could find nothing to indicate that any work was being done to study and ultimately cure SCCC. The search eventually led her to MD Anderson Cancer Center, and to Dr. Michael Frumovitz, a gynecological oncologist who offered to help get a research effort off the ground. An idea started to take shape.
Neuroendocrine Cervical Cancer is rare, and the finding enough patients to support a clinical trial, which often requires participants to be concentrated in one geographical area in order to closely monitor their response, is a significant constraint. However, a more feasible approach to gathering data from affected women in order to better understand the disease was identified. After three years of fundraising and Institutional Review Board approval, the Neuroendocrine Cervical Tumor Registry (NECTuR) was launched in 2013. As of September 2014, there are currently seventy-six patients included. For a disease in which only 100-250 women are diagnosed each year in the United States, this is a very good start!
Making a Difference
By collecting information from patients stricken with SCCC and LCCC, the data can be correlated to understand more about the method by which women were diagnosed, the stage at diagnosis, which treatments are well tolerated, and very importantly, which treatments have a positive outcome. In today’s environment, oncologists are forced to extrapolate from other types of cancer because there is not an accepted “best course” of treatment, which results in inconsistencies in patient care employed in different cancer centers. This is what the NECTuR study is designed to someday change.
One particularly exciting area for research is in the field of genetic testing. Patients such as Rayanne Drensky, pictured here with Dr. Frumovitz, have had the opportunity to get their tumors tested to identify what genetic mutations might be driving the cancer to spread. For some mutations, targeted therapies are available to potentially combat the disease. For patients who have undergone the genetic analysis, the NECTuR study will track the incidences of specific gene mutations, as well as the results of the targeted treatments that are employed. Patients’ responses to various courses of treatment such as various chemotherapy cocktails deployed in tandem with radiation and/or surgery will also be documented in the registry.
For more information including how to contact the Neuroendocrine Cervical Tumor Registry (NECTuR) – Click Here.