HPVandme.org founder shares her story of HPV; physician tells facts

April 2, 2014 | by

As the founder of the nonprofit hpvandme.ORG, Pamela Tom is committed to increasing awareness about the dangers of infection with the human papillomavirus (HPV). Here, as a guest blogger on Breakthoughs, she shares her experience with HPV – and also her interview with City of Hope’s Ellie Maghami, M.D., chief of head and neck surgery. 

By Pamela Tom

It’s been nearly a year since actor Michael Douglas announced that he believed that his oral cancer was HPV-related. Headlines fade, but the epidemic continues to grow.

Photo courtesy of Pamela Tom

Pamela Tom, founder of hpvandme.org, shares her experience with HPV. Her website, hpvandme.org, is dedicated to building awareness about HPV. Tom is shown here with her husband, Jeff. (Photo courtesy of Pamela Tom)

Did you know that the HPV head and neck cancers in the U.S. will surpass the number of cervical cancer cases by 2020? That’s what the American Society of Clinical Oncologists predicted in its 2011 study, yet the public is largely unaware of this growing epidemic.

You might think that’s unfortunate but that it’s unlikely that HPV oropharyngeal cancer would affect you or someone you know. Think again.

A growing number of middle-aged, nonsmoking men (as well as women) are being diagnosed with HPV cancer of the mouth, tonsils or throat. I know because they write to me at hpvandme.org, a nonprofit organization that’s building awareness about HPV infection and HPV throat cancer. I also know because my husband was one of them.

A year and a half ago, my husband, Jeff, said he was having difficulty swallowing and it felt like there was a lump in his throat. When our family doctor had no answers after three visits, I insisted that Jeff go to a head and neck specialist who immediately spotted a large tumor at the base of his tongue – a place that’s undetectable by an ordinary oral examination.

Jeff’s cancer journey through simultaneous radiation and chemotherapy took seven weeks, but it put us on a life-changing path. He still lives with many side effects from the treatment but … he lives.

I founded hpvandme.org to provide news, information and resources to the long line of patients and caregivers who are also being forced to battle HPV head or neck cancer. I couldn’t just sit back and do nothing.

I was surprised to learn that parents didn’t know the Centers for Disease Control (CDC) recommends the HPV vaccine for their sons, as well as daughters.

I was surprised that many folks think HPV is the same thing as herpes.

I was surprised that in the 21st century, so many people are still uncomfortable talking about sexually transmitted viruses and oral sex. No one wanted to talk about AIDS in its infancy either. Or remember when women didn’t talk about breast cancer? A social stigma prevents progress; we must get over it.

The CDC says 79 million Americans are currently infected with HPV and about 14 million people become newly infected each year.

While most people’s bodies clear the virus after a couple of years, some people’s immune systems don’t recognize the virus in order to fight it. Jeff’s head and neck doctor said it’s likely that Jeff was infected by HPV decades ago in his early 20s and that the virus sat dormant in his body until it became cancer.

The CDC recommends the HPV vaccine for girls and boys.

The CDC recommends the HPV vaccine for girls and boys.

What can you do to protect yourself and your family?

  • Learn about HPV throat cancer and how to recognize the early symptoms.
  • Learn about the HPV vaccine and follow the CDC’s recommendation to vaccinate girls AND boys.
  • Talk about HPV.
    More conversations will help break down the social stigma of HPV and speed our efforts to find gentler treatments to reduce long-term side effects.

That’s what we’re doing … talking about HPV with Ellie Maghami, M.D., otolaryngologist at City of Hope. Maghami also leads City of Hope’s Head and Neck Oncology Service.

Pamela Tom:Are you seeing a growing number of HPV-related oropharyngeal cancer cases in your practice?

Maghami: Yes, there has been a significant and growing trend. Currently the majority of oropharyngeal cancer patients who present to my clinic are P16 positive implicating HPV mediated etiology.

Tom: How can someone know if they have a HPV infection in the head or neck area if there is no oral test? What are the early symptoms of HPV throat mouth, tonsil or throat cancer?

Maghami: HPV infection is common. Most Americans are exposed and become infected. Infected individuals remain asymptomatic.

Most individuals with HPV throat cancer present with a palpable neck mass that doesn’t improve despite antibiotics. Less common symptoms are sore throat, earache, difficulty swallowing and blood tinged sputum.

Tom: Some family practitioners may fail to diagnose HPV throat cancer. When is it too soon for patients to see a head and specialist if they are concerned?

Maghami: Family practitioners should be educated about this condition. It is really important that they do not dismiss the possibility of a throat cancer in a young/middle age nonsmoking patient. If a neck mass in an adult patient doesn’t go away with a course of antibiotics a very detailed head and neck exam is mandatory and should not be delayed.

Tom: Some HPV oropharyngeal cancer patients have surgery; others are treated with radiation and chemotherapy. Some have both. Please describe the criteria that an oncologist uses in determining the best treatment plan.

Maghami: Treatment plans are discussed and consolidated in our multidisciplinary tumor board. There are many factors and nuances involved in decision-making. Experience really matters for the best outcome.

In general, early-stage disease can be treated with surgery or radiation alone; more advanced disease requires combination therapy. Common combination therapies include surgery followed by radiation and combined chemoradiation.

Select patients might qualify for transoral surgery, which allows tumors to be removed through the open mouth using robots or laser. These patients enjoy excellent cancer and functional outcomes. We offer these minimally invasive approaches to our qualifying patients.

Tom: All cancer patients seem to experience a "new normal" after treatment. What are the side effects for HPV throat cancer patients?

Maghami: Patients who have transoral surgery and neck dissection alone may have no significant side effects and have near baseline function. Radiation therapy can be tailored to high-risk areas to reduce dryness of the mouth and prevent swallowing impairment. Most patients who have radiation and especially chemoradiation for treatment experience some degree of dryness of the mouth, which may require diet modification. Expertise in treating throat cancers is paramount to good outcome. Some patients who have chemoradiation treatment experience swallowing difficulties that may deteriorate their health and become lifelong.

Tom: I understand the survival rate for HPV throat cancer is 85 to 90 percent if the cancer is detected and treated early. Is that correct? And how early are we talking about to expect a positive outcome?

Maghami: Most patients with T1 to T3 and N1 and low volume N2 disease have excellent outlook for cure. However patients with T4 disease or large volume neck nodal disease remain at risk for recurrence both in the head and neck and at distant sites. Treatment initiation usually takes about two weeks at our cancer center.

(T1, T2, T3, T4 are standard measures referring to the size and/or extent of a primary tumor.)

Tom: Right now researchers are studying ways to calibrate better treatment protocols with fewer long-term side effects. That seems promising, yes?

Maghami: There are a number of institutional and national multi-institutional protocols studying the differences between HPV and non-HPV mediated oropharyngeal cancers. Most protocols are investigating opportunities for deintensification of multimodality treatment programs in order to reduce toxicity yet maintain high cure rates in the HPV cohort.

For non-HPV cancers we need to investigate whether upfront surgery might afford better oncologic outcomes. In addition, for HPV negative tumors novel therapies are urgently needed.

Tom: Finally, what do you attribute to the big disconnect about HPV throat cancer? How can we better educate patients and doctors about this pandemic?

Maghami: The approach needs to be multipronged:

We need to educate older children and teenagers at school regarding risk of HPV contraction and dissemination with sex. Oral sex can transmit this infection.

We need to educate primary M.D.s and dental providers regarding this entity, which is growing in epidemic proportions in our communities. They need to be on the lookout for this.

Medical and dental school should teach this in their curricula.

Media and news outlets should inform the public.

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Learn more about head and neck cancers.