A patient turned advocate underscores the importance of education, especially for those facing a rare cancer.
Stacey Hudson Padova had never heard of vulvar cancer until she received a diagnosis in February 2008; her gynecologist was surprised by the diagnosis, too. Trying to get a crash course on her type of cancer, Padova turned to the internet.
She learned that vulvar cancer is a rare gynecologic cancer that affects just over 6,000 women in the United States each year, and more than half of cases arise after age 70. Padova was 40, putting her among the 20% of women younger than 50 who receive a diagnosis.
Fortunately, Padova, who learned of her disease following a miscarriage, listened to her body. She felt some odd bumps on her labia and asked her gynecologist to biopsy it. Her doctor revealed that the results showed she had one of two cancers, colon or vulvar cancer, because of its location.
“This is one of those things you don’t sit on,” says Padova, 52, who lives in Alexandria, Virginia. “Don’t think it’s going to go away because you’re too embarrassed to talk about it.”
She went from quietly telling people what type of cancer she had to proudly sporting a T-shirt that boldly states “Read my labia. No more cancer.” Padova and her team have worn this shirt as participants in the National Race to End Women’s Cancer, hosted each year by the Foundation for Women’s Cancer, which she credits for helping her connect with the gynecologic oncologist who diagnosed her vulvar cancer, and because it was caught early she was treated successfully with surgery.
“Oddly enough, (the foundation) was a client and then became such a great resource for me,” she says. “There’s really not a lot about vulvar cancer out there, but I was able to use them to learn more about the disease, support groups and the race, which has been a big part of my journey.”
Those educational materials are kept up to date and offer accurate information to women with all types of gynecologic cancers — ovarian, endometrial/uterine, cervical, vulvar and vaginal. Recently, the nonprofit organization added materials on financial resources, survivorship and psychosocial issues, and palliative care, and will soon release a new booklet on vaginal and vulvar cancers.
“In the beginning, I was like a sponge,” Padova says.
“I looked at the foundation’s website and read about any and every cancer to educate myself, and I also viewed the testimonials of people’s stories. I think if you can connect with other people that have gone through the same things, just to hear it, you don’t feel so alone.”
The booklets and brochures are available on the Foundation for Women’s Cancer website. Patients who speak Spanish can download a translated survivorship toolkit and endometrial cancer guide booklet.
All the materials are free to download, and some are available for professional printing and shipping for a small fee.
In addition to providing public awareness, the foundation supports gynecologic cancer research, including that of clinical trials, through fundraisers.
It all comes back to education, a key component of fighting cancer, says Padova, who also emphasizes the importance of the right care team. “I think the foundation was a good place to find that,” she says. “(It) has those resources, a go-to list of doctors and networks. Getting that right positions, you for success.”