Human papillomavirus (HPV)-associated oropharyngeal squamous cell carcinoma is a long complicated-sounding term for throat cancer. Specifically, cancer in the top of the throat, an area that starts at the far back of your tongue and includes your tonsils.

This type of cancer is difficult to diagnose, often discovered as only a small mass in the neck, and with no pain or other symptoms. Mayo Clinic researchers examine the barriers to timely diagnosis in a new study in Otolaryngology–Head and Neck Surgery. Lead author Emily Karp, M.D., an otolaryngology surgical resident at Mayo Clinic says they found that patients would often have a neck mass for weeks or even months before they came in to have it checked out.

"These delays in diagnosis lead to delays in treatment decisions," says Dr. Karp. "And of course, we always want to get to a correct diagnosis and personalized treatment plan for our patients as quickly as possible."

The researchers examined the records of 703 patients diagnosed with oropharynx cancer who had received treatment between 2006 and 2016 at Mayo Clinic in Rochester, Minnesota. This research was supported in part by the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. The center is embedded in Mayo's medical practice and works hand-in-hand with the Practice to identify ways to improve outcomes, enhance experience, and increase value for patients, in short, to transform the practice of medicine.

"We confirmed that on average it was nearly five months from symptom onset to final cancer diagnosis," says Dr. Karp.

Delays in diagnosis can be connected to patient characteristics. For example, in the most recent study, investigators found delays occurred more commonly among patients who identified as a current smoker, while retirees generally were diagnosed more quickly. Delays in diagnosis can also be the result of the patient's health care path. For example, the researchers noted that patients who saw two or more providers before diagnosis took longer to get the correct diagnosis and start treatment. At the same time, antibiotic therapy — while not recommended in practice guidelines for adults with a neck mass — seemed to lead to a quicker diagnosis. The researchers speculated in the paper that this was "likely attributed to the patient being connected with a provider who developed a heightened sense of concern beyond a benign physical exam and initiated close follow-up on that patient's care."

"We see many patients in Rochester with oropharynx cancer, many of whom come from the Midwest," says Kathryn Van Abel, M.D., an otolaryngologist at Mayo Clinic and the study's senior author. "We also are fortunate to serve patients from across the U.S. and from other countries. While we cannot generalize the results of our study beyond our actual patient population, HPV-associated oropharynx cancer is a worldwide epidemic, with a significant global impact."

Dr. Van Abel says in raising awareness of signs and symptoms of oropharynx cancer, she hopes to shorten the length of time to diagnosis, and therefore to treatment.

"It is important to recognize the emotional cost and increase in patient anxiety related to a delay in any diagnosis that patient experiences, especially for a cancer related diagnosis," says Dr. Van Abel. "There are financial costs to testing and treatments associated with a delayed diagnosis as well. While we did not see a difference in cancer outcomes in this study, patients with long delays did present with a larger burden or stage of disease.”

Both Drs. Karp and Van Abel agree that being vaccinated against HPV infections is a good place for almost anyone to start.

“Often our patients ask what they can do to prevent this in the future. In addition to eating a healthy diet, getting the recommended exercise, practicing safe sex, and avoiding tobacco products, I always recommend that they reach out to all of their family members who are candidates for the HPV vaccine and strongly recommend it to them. It is the best way to prevent anyone else from developing this cancer," says Dr. Van Abel.

Vaccinate to prevent cancer

According to the Centers for Disease Control and Prevention, almost all cervical cancer is caused by HPV. It also causes cancers of the vulva, vagina, penis, anus and as much as 60-70% of oropharynx cancers. HPV-associated oropharynx cancer is most often diagnosed in men but, Dr. Karp says, "We strongly recommend the HPV vaccine for everyone who is eligible."

The original HPV vaccine protects against several strains of the virus, including HPV-16, which is the most common cause of throat cancer, she says. The newer version protects against nine strains: protecting patients against the two common wart causing strains as well as seven cancer causing strains. Remarking on the delay between symptoms and diagnosis for throat cancer, Dr. Karp thinks part of the disconnect in is the extended periods of time involved, as well as lack of public understanding. Almost all people from age 9 through 26, and even many as old as age 45 may get the HPV vaccine. Conversely, it only takes one viral exposure — of the wrong kind of HPV — to result in a cancerous growth developing years, or even decades, later.

"We know there is an increased risk of developing HPV associated oropharynx cancer with younger age of sexual debut, increased number of sexual partners, and increased number of oral sexual partners," says Dr. Karp. "However, nearly 100% of sexually active (current or ever) adults have been exposed to the virus. Whether you have one partner or more, and no matter the type of sexual activity engaged in, the risks can be substantially reduced by getting vaccinated."

Educate to find and treat

In addition to hoping for an increase in awareness among patients of the signs of oropharynx cancer, Dr. Van Abel believes this study's findings will help her colleagues as well.

"This research gives us data to be able to educate primary, urgent, and emergent care providers," she says. "We know from our study, these are the providers who see these patients first and need to have high suspicion for cancer in an adult patient with a new neck mass, especially one with no other symptoms such as fever or malaise, and even more importantly, in one that has been present for two weeks or more."

The American Academy of Otolaryngology has published clinical practice guidelines for treatment of a persistent neck mass in adults. Dr. Van Abel says that these guidelines, combined with Mayo's new research, are providing important tools for education.

"Our department has taken action through Grand Rounds presentations, discussions with community providers, and online education materials such as podcasts and YouTube videos. These are small steps toward improving public awareness of the disease," Dr. Van Abel says. She adds that these research findings are made possible by Mayo's unique approach to medical care.

"We have a multidisciplinary Oropharynx Cancer Clinic that has been specifically designed to meet the needs of oropharynx cancer patients," she says. "Through the work of this multidisciplinary clinic we are able see patients in a very efficient manner and expedite their care. This has been an amazing platform for effective and efficient clinical trials to determine risk factors for the disease, study ways to minimize toxicities of treatment, and investigate biomarkers that may be able to screen for oropharynx cancer. "

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