After a vaginal cancer diagnosis two years ago, Sarah Nielsen is eager to raise awareness about gynecologic cancers and find fellow survivors like herself.
Nielsen, a Greensboro, NC resident, said she has never met a vaginal cancer survivor, but she is determined to find a community of support. Vaginal cancer is considered to be the rarest form of gynecologic cancer. According to the American Cancer Society, 1 out 1,100 women develop vaginal cancer in their lifetime.
Nielsen’s journey with vaginal cancer began after a Pap test found pre-cervical cancer cells, which was followed by a hysterectomy to remove her uterus and cervix. Four years after the surgery, Nielsen, 38, started experiencing the signs of vaginal cancer, which typically include: unusual vaginal bleeding, pain, problems with urination or bowel movements, a watery vaginal discharge and/or a lump or mass in the vagina.
Nielsen’s personal mission now is to help other survivors through their cancer journey. When Nielsen was enduring the treatments and doctor appointments she described herself as feeling overwhelmed from her cancer treatments, her job, and taking care of her children. She said she “couldn’t even stop and think.”
Now living in the aftermath of treatment, Nielsen reflects on her experience and tries to find a community of support for other women.
“I want to make sure that cervical and vaginal cancer survivors are not alone,” she said. In her initial cancer journey, Nielsen said she was in control of everything. “I wish I had been more willing to accept help,” she said. Nielsen relied only on her husband and mother for support but was unwilling to ask for help from outside her immediate family.
Yet, part of Nielsen’s unwillingness to ask for help stemmed from the shame of the connection between human papillomavirus (HPV) and vaginal cancer. Both cervical and vaginal cancers are associated with this sexually transmitted virus. After her treatment, she realized that the more women talk about the HPV connection with cancer, the more normalized the topic will become. For her, it is also important to raise awareness about vaccinating children against HPV to prevent these cancers.
Recently, she helped organize an event at High Point University in High Point, NC. She teaches in the Human Relations department and she is an industrial organizational psychologist. The event called, “Blowouts and Manicures,” started a conversation about HPV vaccines and cervical cancer on her campus. The funds from the haircuts and manicures went to the local chapter of Relay for Life. For Nielsen, small advocacy events have the power to start important conversations.
“I don’t love to talk about my cancer journey, but it if helps other women go through it, then I will talk about vaginas and HPV all day,” she said.