Marilyn Votaw, 59, has spent the past decade supporting the nourishment and growth of young women. So when she found out she had cancer — one that is now preventable thanks to a vaccine — she put aside embarrassment to discuss prevention, the importance of knowing your body and getting the HPV vaccine.

A lump in her neck that wouldn’t go away

Votaw was one of three children born into a very “academic” family. Her father was a University of Connecticut School of Medicine microbiologist, and her mother is now a retired psychotherapist.

“I’m a medical snob — well-informed in medicine and how my body works,” Votaw said.

Votaw sees her primary care physician and her dentist as recommended. In May 2022, she saw her dentist. Everything was well. Her primary care physician had retired earlier that year, and she had scheduled a new patient visit for November with a new doctor.

As the house director of Kappa Kappa Gamma at Colorado State University, Votaw lives almost year-round at the sorority house. She gets the same holiday breaks as CSU students and two additional weekends off a semester.

In June 2022, the girls had all moved out of the house for the summer, and Votaw was planning her usual July beach vacation. That is when she noticed the lump on her neck and thought it might be a swollen lymph gland.

“I thought maybe I was getting sick, or it was a flu thing,” she said. “But I never got sick.”

Votaw went ahead with her July vacation. The lump was still there when she returned a few weeks later. Concerned, she went to urgent care, where she saw a nurse practitioner who ordered a sonogram of her neck.

“She told me I needed to see an ENT (ear, nose, throat doctor) immediately. She wrote me a referral and told me to establish a primary care doctor on Monday.”

The sonogram confirmed a mass.

‘How did we end up in cancer land?’

Votaw saw an ENT the following week. “He said, ‘While it’s possible that this is an infection, I think we need to assume this is cancer,’” Votaw said.

“I went to my car, called my mom and cried,” she said. “How did we end up in cancer land? How did that happen?”

The biopsy confirmed throat cancer, but there was good news, the cancer was found in an early stage.

Her heart sank as she dealt with a cancer caused by a sexually transmitted infection. Mortified, she thought, “How can I talk about this?”

What is HPV?

There are more than 200 types of HPV (human papillomavirus), about 40 of which can be spread through sexual contact, making it the most common sexually transmitted infection in the United States.

“To be human is to get HPV. Assume all people have it — you and your future partners,” said Dr. Christine Conageski, a physician at the UCHealth Women’s Care Clinic on the Anschutz Medical Campus and associate professor of obstetrics and gynecology at CU School of Medicine.

In nine out of 10 cases, HPV goes away on its own within two years without health problems. Often, the person never even knows they had it. HPV can remain in the body for years without detection or abnormalities.

So why is HPV such a concern that there is a recommended vaccine? 

For unknown reasons, some people can’t fight off the virus. The infection causes cells to change and, if not treated, those cells may become cancerous over time — sometimes taking decades.

Multiple cancers are attributed to HPV in the U.S. According to the American Society of Clinical Oncology, HPV is responsible for 91% of cervical and anal cancers, 75% of vaginal cancers, and 69% of vulva cancers. According to the National Cancer Institute, 70% of oropharyngeal cancers (ones that develop in the mouth and throat) and over 60% of penile cancers are caused by HPV.

At first, Votaw struggled to come to terms with the cause of her cancer.

“Now, I’m at a place where I understand to have it (HPV) is human. Everyone has it; I just lost the lottery,” she said. “I am a human that collided with bad odds. It is no one’s fault. … That took the guilt and shame out of it.”

HPV accounts for about 37,000 new cases of cancer each year.

Few screenings for HPV-caused cancer, so cancer prevention is key

There is only one FDA-approved screening for HPV-related cancers: the Papanicolaou (Pap) test. Although experts proved the pap test efficacy in 1941, the HPV test to screen for cervical cancer (often happening during the same exam) didn’t come along until decades later, and there is no FDA-approved HPV test to detect throat or anal cancers, though test are under development, said Dr. Hillary Dunlevy, infectious disease expert at UCHealth on the Anschutz Medical Campus and assistant professor at CU School of Medicine.

“Screening is secondary prevention, but primary prevention is the vaccine. If you get the vaccine, you will prevent most of these cancers. There is no medicine to treat HPV,” said Dunlevy.

The vaccine became available in the U.S. in 2006. The Centers for Disease Control and Prevention recommended the vaccine for males and females aged 11 to 26 but as young as 9. It prevents 90% of all HPV-related cancers.

U.S. health officials recently expanded the recommended age range to 45, with a health care provider’s recommendation. However, the vaccine’s effectiveness lowers in older age groups because of possible previous exposure.

Treating her HPV-related throat cancer

After Votaw’s diagnosis, things moved “quickly and very seriously.”

“For me, it was about finding the right team,” she said.

Her family ties with the medical community led her to Dr. John Campana, a head and neck surgeon at UCHealth Highlands Ranch Hospital and associate professor of Clinical Practice, Otolaryngology-Head and Neck Surgery for CU School of Medicine on the Anschutz Medical Campus.

“I met him, and right away, I knew that was the guy,” Votaw said.

She was impressed by his willingness to explain her cancer and the surgery plan in detail. She said he reviewed with her photographs of the primary infection site on the base of her tongue. He took notes during the appointment and even printed them off for her before she left.

The surgery took four hours. Along with cancer, surgeons removed Votaw’s right tonsil and the lymph nodes on the right side of her neck. She spent five days in the hospital before returning home.

Then it was time for radiation: five days a week for six weeks and chemotherapy once a week for six weeks. Votaw worked with UCHealth radiation oncologist Dr. Joshua Petit and hematology oncologist Dr. Ross McFarland.

Treatment was grueling, she said, but she was determined to get the upper hand on her cancer.

“They did give me a choice on whether or not to do chemo,” Votaw said. “But this wasn’t about the fight anymore. It was more about control. ‘This is my body, and you (cancer) need to get out.’ I wanted to toss everything at it. I didn’t want to get down the road and see I could have done more.”

Votaw did physical therapy and worked with a nutritionist after surgery. She admits that recovery has been a rollercoaster. Some days she’s great and other days, “are the pits.” She continues to go to acupuncture to calm her nervous system. She sees a mental health therapist to process her experience. On the outside, “I look fine,” she said. But inside, she feels she still has some ways to go.

She’s continued her work as a house director, caring for about 50 young women at a time. She shares her knowledge of HPV and the vaccine when appropriate. Still, cancer made her realize that sometimes you should ask for help and leave behind the “I can do it all by myself” mentality.

“Cancer has forced me — and given me the opportunity — to really rely on many people in a way I’ve never had to do before,” she said.

Before and after the HPV vaccine

Those connections also helped her build awareness about HPV.

“Everyone should be aware of the ubiquitous presence of HPV in adult human bodies and the possibility that certain HPV strains will cause multiple types of cancer,” she said.

Because of her age, Votaw never had the option to get vaccinated against HPV.

“I don’t know if people my age know how vulnerable they are (to HPV-related cancers) because we aren’t eligible for the vaccine,” she said. “There is no way to prevent (HPV) so you must catch (cancer signs) early.

“Don’t mess around with these things. Know your body and speak up when you think something is wrong.”

And for those eligible for the vaccine, Votaw hopes they take the opportunity to protect themselves against a similar fate as hers.

“HPV cancers are preventable. So many cancers are not,” she said.