MORGANTOWN, W.Va. – A WVU Cancer Institute health information specialist who devotes her professional life to sharing her cancer journey to help save the lives of others recently was honored with the 2016 Immunization Advocate Award from the West Virginia Immunization Network. Shelly Dusic, who works for the Cancer Institute’s Cancer Prevention and Control Division under its West Virginia Breast and Cervical Cancer Screening Program grant, was recognized for her work in advocating human papillomavirus (HPV) vaccines throughout West Virginia.
Several types of cancer are linked to the HPV virus, including cervical cancer and some head and neck cancers. The West Virginia Department of Health and Human Resources Bureau for Public Health reports that a federal study assessing the burden of HPV-related cancers in Appalachia found that the magnitude of all HPV-related cancers was higher in Appalachia compared to non-Appalachian regions. The Bureau and 11 other healthcare organizations in the state call on healthcare providers around West Virginia to increase the use of vaccines known to prevent certain cancers caused by HPV.
Dusic was diagnosed with cervical cancer, along with endometrial cancer, long before there was a vaccine to prevent cervical cancer. “The day that the FDA approved the HPV vaccination, I cried,” she said. “If ever a prayer had been answered, that was it. We finally had a way to not only cure this cancer that had taken so much of my life; we could prevent it.”
Her diagnosis did not come quickly or easily. She was in her first year of college on a scholarship and had just received a financial aid check, which she had planned to save to do an exchange program in her senior year, when she collapsed in pain and was rushed to the emergency room. Three weeks later, she received a call that she needed a biopsy because the radiologist suspected that she had cancer and indicated that she would be lucky to have three months to five years to live.
Dusic searched relentlessly for resources to help with the cost of the biopsy because she had no insurance. “Unfortunately, I was a full-time college student; sick, unemployed, and my parents couldn’t afford to help me,” she said.
At age 18, she decided to pre-pay for cremation services, the one thing that she could afford, and hid her illness from her family for years. “I was in pain, alone, hurt, embarrassed, devastated, and bitter that my life was so utterly disposable,” she said.
Dusic’s quest for help and hope came when she found a nurse with a sympathetic ear, whom she credits for saving her life. After evaluating her health records, the nurse made her an appointment with a surgeon. What Dusic was advised years prior proved to be true: she had cancer.
Finally, she had a diagnosis and was ready to begin her treatment. At the age of 23, she had a hysterectomy. “I gained my life, and lost my hope of children, my confidence, my identity as a woman, all in one stroke of the surgeon’s knife,” she said. She counts herself lucky that she didn’t have to have radiation or chemotherapy.
It wasn’t until a couple years ago that Dusic decided to talk publicly about her experience. Because of the stigma that comes with surviving a cancer caused by HPV, she was worried that people wouldn’t believe her or would think that she was just trying to get attention. But after reassurance by her stepdaughters that they wouldn’t be ashamed of her, she decided against remaining silent.
“No one should ever have to go through what I did, and maybe if I am strong enough for those who can’t talk about it, perhaps if I scream, shout, and yell long enough and loud enough, we will start taking action to make sure no one else ever has to,” she said.
Dusic said the stigma and embarrassment of talking about HPV has become a huge barrier to vaccination, and people in West Virginia are still dying from HPV related cancers. That is why she is now an outspoken advocate for HPV vaccination.
“Bearing my scars, my shame, and past for all of the world to see will never be easy,” she said. “I simply hope that someday, when HPV-related cancer is a thing of the past, I will get to hold my great-grandchildren and tell them it was worth it.”
In February, Dusic was invited to the Every Woman Every Child: Towards a Cervical Cancer Free World event hosted by the United Nations, where she talked to other attendees about the West Virginia Cancer Plan, the statewide blueprint for cancer prevention and control, as well as programs the WVU Cancer Institute is working with to combat the cancer burden in Appalachia.
Her network for promoting HPV vaccination in West Virginia is broad and includes Mountains of Hope, West Virginia’s Cancer Coalition; the American Cancer Society; Merck Pharmaceuticals; WVU Student Health; WVU Medicine clinics; county health departments; physicians; nurses; and the West Virginia Immunization Network.
Additionally, Dusic is a strong advocate for breast and cervical cancer screening across the state and coordinates the annual Vandalia-Con: Saving the Mothers of Invention Steampunk Convention in Parkersburg.
The event raises funds to provide uninsured West Virginia women with screening, diagnostic and treatment services for breast and cervical cancer. All proceeds benefit the West Virginia Breast and Cervical Cancer Screening Program and Bonnie's Bus, WVU’s mobile mammography unit that provides breast screenings and health education to women living in rural and underserved communities in the Mountain State.