By the time Sandra Hoehler was diagnosed with cancer, it was as much a moment of relief as one of fear. Six years earlier, Hoehler, now 38, started experiencing symptoms including a persistent genital itch and severe pain that she’d eventually learn were associated with her cancer.
“I kept trying to find out what’s going on because this itch now had progressed to something so severe it would wake me up at night. It would make me cry,” Hoehler told “Good Morning America.” “I completely felt like nobody was trying to pay attention to me.”
Over a six-year period, doctors diagnosed Hoehler with and treated her for yeast infections and lichen sclerosus with different ointments and creams, she told “GMA,” but her pain only intensified.
“I was in pain every single day. Whether it was an itch, burning, pain just from sitting,” she said.
Hoehler told “GMA” she asked for a biopsy for further testing, but didn’t really expect the devastating news she’d learn: It was cancer.
“From time to time, those doubts, ‘Are you really crazy?’ were there. So there was relief. Like listen, you’re not crazy. Everything you have experienced has been real, has been true and now you know what it is.”
Hoehler was diagnosed with vulvar cancer, which accounts for 0.7% of all cancers in women, according to the American Cancer Society.
“Is this going to be a death sentence? What could this cancer do to me still?” Hoehler said she asked herself. The American Cancer Society estimates roughly 6,000 vulvar cancer diagnosis and roughly 1,200 women will die from this cancer in 2019.
Since her diagnosis in December 2017, Hoehler has had multiple surgeries, including a radical vulvectomy, and is recovering physically and emotionally.
But Hoehler told “GMA” that the informational material doctors were able to provide her with about her cancer was limited due to how rare the disease is.
“I knew something had to be done. Women have to know this exists and they have to know what are the symptoms? What are the signs?” she said.
“I wanted to do something about it, because when I found myself at that doctor’s office, getting those results, hearing vulvar cancer and never having heard of it before.”
Hoehler organized a vulvar cancer awareness advocacy forum where women can share their symptoms and stories.
How a painful menstrual cycle was a warning sign
Like Hoehler’s journey to discover that she had vulvar cancer, Caitlin Nespoli, 29, had a similar experience with gynecologic cancers manifesting themselves with more common menstruation symptoms.
At 16, Nespoli’s