Coping With the Psychological and Social Effects of HPV-Positive Head and Neck Cancer

Human papillomavirus (HPV) and its relationship with squamous cell carcinoma, the most common head and neck cancer, is a new oncology topic attracting interest across all areas of cancer care.

HPV-positive head and neck cancers notably tend to occur in younger, fit people without other health problems. This type may not even be associated with risk factors such as smoking or alcohol. Patients with HPV-related head and neck cancer, whose average age is younger than for conventional head and neck cancers, may feel vulnerable when learning at diagnosis that it is HPV-related. Although psychological distress matters greatly during diagnosis and treatment, few studies address it.

Doctors treating HPV-related head and neck cancer should develop disease-specific communication skills and skills addressing sexual health, psychosocial support and other HPV concerns. We prepared this article to guide doctors, patients and relatives.

Frequency and Importance of HPV-Related Head and Neck Cancer

HPV-related squamous cell head and neck cancer has increased substantially over the past twenty years. Between 2002 and 2011, the proportion of HPV-positive head and neck cancers increased by % 47 in men and % 38 in women.

Among head and neck cancers, tongue, palate and tonsil cancers are particularly increasing. Risk factors for HPV-positive head and neck cancer include multiple sexual partners, middle age, smoking and low socioeconomic status.

These oropharyngeal (mouth and pharynx) cancers have been associated with a history of 6 or more lifetime sexual partners and 4 or more oral sex partners. Tonsil cancer has been associated with 4 or more lifetime oral sex partners and oral sex at a younger age in male same-sex relationships. In women, base-of-tongue cancer has been associated with oral sex. However, although risk is higher with multiple partners, it also exists with a single partner.

- Related Topic: Head and Neck Cancer Symptoms

A link has been found between changes in sexual behavior over time and increased HPV-related head and neck cancer risk.

Data from Asian populations show that HPV (particularly subtype HPV 16) can pass from pregnant women to babies through both cesarean and vaginal delivery. Some published studies show cesarean delivery reduces transmission by % 46, yet HPV occurred in % 15 of babies born by cesarean to HPV-positive mothers. More recent studies concluded there was no transmission difference between cesarean and vaginal delivery.

- Related Topic: Can HPV Pass From Mother to Baby During Pregnancy? How Is It Transmitted, and Can It Be Prevented? (in Detail)

Recommendations During Treatment of HPV-Related Squamous Cell Head and Neck Cancer

Oncologists treating HPV-positive head and neck cancer should remember:

• Discuss the diagnosis, 
• Inform the patient if their head and neck cancer is HPV-positive (diagnosis can be made in tumor tissue with PCR testing for HPV DNA),
• Be prepared to answer specific questions about HPV and sexual behavior,
• Address the patient's emotional reactions,
• Assess psychosocial needs.

For communication, oncologists need to discuss the link between head and neck cancer and HPV. Because HPV is sexually transmitted, guilt and anxiety may make accepting the cancer diagnosis harder. Partners' and relatives' reactions may further complicate coping.

- Related Topic: How Should Patients, Relatives and Physicians Communicate?

The way oncologists discuss diagnosis may influence the level and nature of subsequent communication. Educational materials and open communication channels can help patients prepare for the uncertainties accompanying HPV-positive head and neck cancer and the many questions arising over time.

Oncologists and other doctors should be prepared to discuss risk factors, HPV transmission and sometimes sexual concerns.

Oncologists may need to advise on sexually transmitted infections and previous sexual practices and address concerns about intercourse, virus transmission risk and sometimes fidelity.

How and When Might I Have Acquired Oral HPV?

HPV can be transmitted to your skin or mucosa (moist areas such as inside the mouth) from infected people, particularly through oral, vaginal or anal sexual contact.

Transmission through mouth-to-mouth kissing is disputed. Sharing sex toys, cigarettes, lipstick or toothbrushes may transmit it. Although oral HPV is less common than anal or genital HPV, identifying where it began is difficult. You may have acquired it years or decades earlier, long before cancer developed.

Some studies indicate oral sex is the main source of oropharyngeal HPV-16 infection, and many reports link oral sex with HPV-related oropharyngeal cancer. Despite clear evidence of a causal relationship, carcinogenicity (cancer formation) remains unclear in its molecular details.

Physicians should explain the causal relationship between HPV and head and neck cancer and its importance without interrogating patients about sexual activities.

Condoms may reduce HPV transmission risk, but existing data are inconsistent, and condoms cannot be said to prevent transmission definitively. Unfortunately, with oral HPV, there is no certain way to predict whose infection will clear spontaneously and who will instead develop cancer.

In people acquiring HPV, within 2 years the immune systemcontrols infection in %90 of cases.

- Related Topic: Sexuality and Sex Life in Cancer

My Family Member / Partner Has HPV-Positive Head and Neck Cancer. What Should I Do?

Healthcare staff should provide support and information normalizing the patient's sexual life. The link between HPV status and cancer should be communicated neutrally and without judgment to minimize guilt. Many HPV-positive head and neck cancer patients have not had many sexual partners; HPV can also be acquired from previous partners, carried throughout life and remain dormant for years.

You should know this virus does not spread through routine physical contact. No evidence proves transmission through shared toilets. After successful treatment of HPV-positive head and neck cancer, the likelihood of transmitting infection to future partners is also low.

Does My HPV-Positive Cancer Put My Partner at High Cancer Risk? What Can Be Done for Protection?

Women should regularly attend normal gynecological examinations including cervical smear screening as part of these visits. There is no standard HPV screening test for male partners. After an HPV-positive cancer diagnosis, the partner's cancer risk remains debated. Some studies found that women with cervical cancer — almost all caused by HPV — had male partners whose risk of HPV-positive tongue and tonsil cancer increased 2.4 to 2.7 times. Other studies show partners of HPV-positive head and neck cancer patients have no increased oral HPV risk compared with the general population.

After cancer treatment, HPV DNA is generally undetectable in oral cells. However, infection can remain latent/dormant and reactivate later.

What Does It Mean That My Cancer Is HPV-Positive?

We know survival and disease outcomes for HPV-positive head and neck cancers are more favorable than for HPV-negative cancers. HPV-positive tumor status significantly increases survival, and HPV positivity is the most important prognostic (predictive of disease course) factor for head and neck cancers.

Can HPV Infection Lead to AIDS or HIV Infection?

HIV, which causes AIDS, and HPV are different viruses without a direct connection. Both can be sexually transmitted; without protection such as condoms during sexual activity, you may acquire HIV, but HPV and HIV are unrelated.

- Related Topic: HIV Infection-Related Cancers and Other Diseases (in Detail)

How Are Tobacco and Alcohol Related to Head and Neck Cancers?

Smoking and alcohol are two independent, leading head and neck cancer risk factors. However, HPV-positive cancers can occur regardless of smoking or drinking. Smoking increases HPV infection risk in the head and neck region. HPV-positive head and neck cancers in smokers also generally have a less favorable prognosis (disease course and outcomes).

Combining smoking and alcohol increases head and neck cancer risk in both HPV-positive and HPV-negative people.

- Related Topic: 4 Tips for Quitting Smoking – Current Approaches

What Precautions Can I Take for My Children, and Does HPV Vaccination Work?

HPV vaccinesare recommended not to treat HPV and related diseases but for prevention as their purpose. Vaccination is recommended before sexual activity begins. In many countries, vaccines given to girls and boys aged 11-14 protect against HPV subtypes causing genital warts, cervical cancer, head and neck cancers and other anogenital cancersthrough this protection.

- Related topic: Boys Should Also Receive HPV Vaccines – A Story to Learn From

There are currently 3 HPV vaccine types: 2-valent (bivalent), 4-valent (quadrivalent) and 9-valent (nonavalent).

In our country, the quadrivalent HPV vaccine Gardasil (against HPV types 6, 11, 16, 18) and the bivalent vaccine Cervarix (against HPV 16 and 18) are available. The nonavalent vaccine received, in 2014, FDA approval.

However, whether HPV vaccines given at older ages (for example, 18-45) sufficiently protect against associated diseases is unclear. Some studies are favorable, but there is not yet approval for use at older ages.

Apart from preventive vaccines, therapeutic HPV vaccine studies continue. For this purpose, in not-yet-cancerous but at-risk cervical cellular changes, preclinical therapeutic HPV vaccine results appear positive, but no approval exists for this use either.

Psychosocial Support for Patients Diagnosed With HPV-Positive Head and Neck Cancer

Emotional reactions when HPV-positive head and neck cancer is explained may differ greatly from reactions to smoking- or alcohol-related head and neck cancer.

Healthcare staff need training to best address self-blame, feeling judged and anxiety about intimate relationships among women with HPV. Evidence-based, patient-centered counseling should minimize adverse psychosocial consequences. Usual emotional reactions during head and neck cancer diagnosis (anxiety, shock, fear, shame) may obstruct understanding of the condition, and processing an HPV diagnosis as well may be especially difficult.

Patients may develop various ways of coping with diagnosis, treatment and outcomes:

• Self-denial and minimizing the HPV diagnosis through emotional reactions,
• Extreme emotions during treatment, sometimes continuing as anger and aggression,
• Particularly patients with limited mobility and care needs may feel greater distress and be unable to find strength to fight the disease.

Assessing Psychosocial Needs From the Outset and Throughout Treatment

Identifying psychosocial difficulties associated with HPV-positive cancer diagnosis is an important challenge for doctors.

Psychosocial needs in HPV-positive head and neck cancer can be inferred from HPV-related gynecological cancersas a reference. Guidance exists for HPV and genital warts, cervical cancer screening and HPV testing.

A small clinical study of 10 people after treatment for HPV-related oropharyngeal cancer showed feelings including guilt, anger, sadness, helplessness and shame about HPV's sexually transmitted nature.

People with HPV may experience psychological distress, occupational difficulties (unemployment and difficulty finding work), psychosocial and psychosexual challenges related to cognitive impairments, and sexual dysfunction, fearing changes in appearance from warts, head and neck cancer and other conditions. These issues may affect adherence to cancer treatment.

- Related Topic: Depression and Anxiety in Cancer Patients – Causes, Symptoms and Treatment

A study of 837 people with HPV but without HPV-related head and neck cancer reported serious psychosocial effects in 489. More than three-quarters reported anger or depression, and two-thirds reported shame. HPV also negatively affected sexual activity. Most expressed dissatisfaction with healthcare providers' counseling on emotional and sexual matters.

Education

Head and neck cancer professionals should provide information from various sources to reduce knowledge gaps concerning HPV-positive head and neck cancer. Education should focus on the disease, treatment, possible symptoms and sexual behavior associated with increased transmission risk. Brochures and videos about head and neck cancer and HPV vaccination programs can be offered to patients and relatives. An example can be viewed below:

Providing and obtaining online information about head and neck cancers requires care. These are specialized medical conditions about which even healthcare professionals may know little. Despite their difficult nature, content for patients and relatives must be understandable, provide appropriate guidance and account for patient feedback.

Counseling

Emotional support counseling can be provided through improved coping techniques and information from booklets, carefully prepared websites and/or medical consultations.

The psychosocial impact of HPV-positive squamous cell head and neck cancer should be emphasized, and appropriate resources provided for patients' questions. Patients may be confused about their diagnosis's sexual implications. If necessary, the oncologist can recommend counseling on intimacy and sexual matters at a second meeting.

Conclusion

HPV subtype 16 has been associated with squamous cell head and neck cancer in young, sexually active people who do not smoke or drink. Clarifying the HPV–head and neck cancer link changed treatment and patient approaches. Doctors treating HPV-positive head and neck cancer should develop new communication skills focusing on infection risk, sexual matters (habits and private life) and education in daily practice. Emotional reactions to discussing HPV may distress patients and lead them to ask doctors specific HPV and sexuality questions.

Many cancer centers provide insufficient psychosocial support, managing situations through individual approaches rather than validated questionnaires. Developing patient-centered information and counseling and providing international guidelines may help doctors become more confident, skilled practitioners in supporting HPV-related head and neck cancer patients.

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