A diagnosis of Small or Large Cell Neuroendocrine Cervical Cancer is terrifying, both for the patient and her loved ones. The disease, called SCCC for short, is both rare and aggressive. Unlike the more common squamous cell or adenocarcinoma forms of cervical cancers, the cause of SCCC is unknown. There is no precancerous stage of SCCC, and routine screening often does not detect it until the disease has advanced enough to cause symptoms. Once caught, there is no standard treatment protocol to save the lives of those diagnosed with SCCC, and few oncologists have ever treated anyone with the disease. Little information is available to help women impacted by this illness.
The disease can be both devastating and isolating, but there is hope! DamnCancer was founded to raise awareness of SCCC, provide support resources to those grappling with the disease and support research into effective treatments to combat it.
An estimated 100 women per year are diagnosed with Small or Large Cell Neuroendocrine Cevical Cancer in the United States, and few gynecologists have ever encountered it. Unlike more prevalent types of cancer such as breast cancer or even “normal” cervical cancer, it is difficult to find helpful information about SCCC. When our family received this frightening news, we spent lots of time combing the Internet; we found few articles, and most of the content was alarming. To assist patients and others impacted by SCCC, our goal is to provide easy access to information about the disease. From our experience, knowing as much as possible about the enemy – and that there are survivors! – helps one prepare for battle.
No one has to fight SCCC alone. Resources are available for both patients and their loved ones, and our goal is to offer a simple way to access these resources. DamnCancer provides helpful links to online support communities, and we feature blogs from several of the brave women who are currently fighting or have fought this beast. Additionally, we provide patient-endorsed healthcare providers who have treated SCCC.
We don’t have a celebrity face to represent SCCC, nor do we have corporate sponsors clamoring to support us. Our teal, zebra-striped ribbon does not adorn packaged foods, and we don’t have a telethon, direct mail or viral challenge campaign to make our cause well known. What we do have is a dedicated group of women and their supporters who have raised $250,000 to date to fund SCCC research. The Neuroendocrine Cervical Tumor Registry (NECTuR) was launched at the University of Texas M.D. Anderson Cancer Center in 2013 to collect data on the diagnosis, treatment and outcome of individual cases, with the hope of saving lives by finding treatments that work. The role of genetic analysis to drive treatment options is a particularly promising area of focus. 100% of the funds collected on DamnCancer are directed to the SCCC research fund at M.D. Anderson to further the goal of finding a cure for SCCC.