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Personal Story: Head and Neck Cancer Survivor Advocates for HPV Vaccination

Source: American Cancer Society

When Cheryl Stark, 50, learned she had head and neck cancer, she didn’t want to talk about it. Her doctor told her the cancer likely came from the human papilloma virus (HPV). “I was embarrassed and it was hard for me to get past the stigma associated with HPV because it’s sexually transmitted,” said Stark.

But when she looked up information about HPV online, she found out most people will have the virus at some point in their lives. “The more I learned how many people have or had the virus, I knew I was in the majority,” she said. “That made me feel better, so it’s not hard now to talk about it.”

“This is the same virus that we are now vaccinating our children for, and can also cause cervical cancer,” said Stark. The American Cancer Society recommends girls and boys begin getting vaccinated for HPV when they are 11 or 12. When Stark was that age, the vaccine was not yet available.

From caregiver to patient

In 2015, Stark and her husband quit their jobs, sold their house in Illinois, and moved to Kansas City to take care of his widowed aunt, who was in poor health and needed help. Stark is a registered nurse. One day she was working in the yard when she felt a lump on the right side of her neck. It was about the size of a walnut and it was hard. Stark knew it needed to be checked out.

She underwent a CT scan, a PET scan, and a biopsy and in October 2015 was diagnosed with squamous cell carcinoma on the base of her tongue. Her treatment plan included radiation and chemotherapy every week for 2 months.

“I seemed to be breezing along until about Christmas. Then it hit me like a brick wall,” said Stark. “I was very weak, I couldn’t taste anything, I was having a hard time swallowing, my throat was extremely sore, and I was losing weight.” She became so weak, her treatment was put on hold and she spent a week in the hospital with a feeding tube. When she resumed treatment, she stayed in bed most of the time, relying on her health care team and her family for support.

Because her husband needed to work, Stark’s mother moved in for a while to take care of her. A neighbor helped out too. And when it was just the two of them, the aunt made Stark a bell to ring in case she needed anything. “We were just two people trying to take care of each other,” she says.

A new normal

Stark finished treatment at the end of January 2016, and in March, scans showed no more evidence of cancer in her body. Since then, she says, it’s been a long road to recovery. “A year after treatment, I still suffer from very little taste, no saliva production, constant ringing in my ears, hearing loss, dizziness, neuropathy in my hands and legs, fatigue, trouble swallowing, pain in my neck, shoulders and upper arms, and difficulty remembering. I am so thankful to be alive that these side effects, which will probably be permanent, are just my ‘new normal.’”

Recently, Stark returned to work one day a week as a radiation oncology nurse. She uses her experiences to help patients. “I walked in their shoes,” says Stark. “I can’t always make them feel better, but I can say, ‘I know exactly how you feel right now.’ That’s all I can do – be someone who knows how it feels.”

She says she stays positive by taking it one day at a time. “I get teary-eyed every once in a while at the whole situation, when I think about the things I used to be able to do and eat and taste. I’m happy that the cancer’s gone – that’s the most important thing.”

Get vaccinated

Education is needed so that HPV vaccination will not be taboo. It’s important to be able to talk about it without being embarrassed.

Cheryl Stark

Even before she got sick, Stark saw benefit in the HPV vaccine and had her daughter vaccinated. Since she got cancer from the virus, she’s become a huge advocate.

“Education is needed so that HPV vaccination will not be taboo. It’s important to be able to talk about it without being embarrassed. This is a virus most people will probably have at some point in their lives, so it’s something we all have to deal with. Whether someone is now sexually active or not – that’s not the issue. The issue is that someday they will be. Education is the most important thing”

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