Guide Helps Oncologists Talk to Patients With HPV Oral Cancer

Fran Lowry

October 04, 2016

New recommendations that aim to help doctors communicate more efficiently with patients who are newly diagnosed with human papillomavirus (HPV)-related head and neck cancer have been issued by the European Head and Neck Cancer Society's Make Sense Campaign.

The recommendations were published in the Annals of Oncology.

The risk factors for HPV-related head and neck cancer include a higher number of orogenital sexual partners, the authors comment.

Patients who are told that their cancer is HPV related may have feelings of self-blame, guilt, and shame, in addition to the usual emotions that arise after a diagnosis of head and neck cancer, the authors write, and physicians need to be prepared to talk about risk factors, transmission of HPV, sexuality, and other psychosocial concerns.

The experts involved in the Make Sense Campaign hope that the new best practice guidelines will help healthcare professionals be more confident and resourceful in supporting patients with HPV-related head and neck cancer as they go through their treatment.

"We wish to stress that clinicians need to be confident in dealing with the topics of HPV infection and sexual behaviour in addition to being prepared for the emotional reaction from some patients and how to effectively communicate during these sometimes difficult times," lead author, Michel Reich, MD, Centre Oscar Lambret, Lille, France, told Medscape Medical News.

"Clinicians need to be prepared to discuss counseling, psychosocial assessments, impact on sexual behaviour, and the multidisciplinary approach for treatment, as well as ensuring there is a psycho-oncologist available," Dr Reich said.

"Currently, topics of how a patient would get an HPV-associated head and neck cancer diagnosis are taboo due to cultural reasons or general discomfort in discussing by both the clinician and their patients. In order to adequately treat and ensure patients and their caregivers are informed, they need to erase the stigma and begin having open, honest discussions," he said.

Role of Oral Sex

The authors note that orogenital sex with multiple partners is considered to be a risk factor for HPV head and neck cancer, more specifically oropharyngeal cancer (OPC), which has increased in incidence in recent decades, particularly cancer in the base of the tongue and palatine and lingual tonsils.

They cite data from a pooled analysis (Int J Epidemiol. 2010;39:166-181) conducted the International Head and Neck Cancer Epidemiology Consortium. OPC was associated with having a history of six or more lifetime sexual partners and four or more lifetime oral sex partners. Cancer of the tonsil was associated with four or more lifetime oral sex partners and, among men, with having had oral sex at an earlier age. For women, cancer of the base of the tongue was associated with having had oral sex, having two sexual partners in comparison with only one and, among men, with a history of homosexual contact.

However, the authors add that although the risk for OPC is higher with multiple sexual partners, this does not exclude the possibility of developing it with a single sexual partner.

When it comes to addressing questions that patients ask about their own cancer, the answers are not straightforward — in fact, some are "a matter of debate," the authors add. Some epidemiologic evidence suggests that a strong association between HPV infection and oral and OPC exists. However, there have also been cases of HPV-associated OPC without any evidence of oral sex.

"Oral sex is undoubtedly a risk factor, and with increasing evidence from epidemiological studies, it is an important point to discuss with patients if the question is raised," the authors comment. But they add that "physicians should in a tactful manner explain that epidemiological data regarding a possible link of transmission of HPV–OPSCC [oropharyngeal squamous cell carcinoma] and oral sex remain inconclusive."


Dr Reich and his colleagues make recommendations for physicians to emphasize with their patients. Dr Reich noted: "When speaking with patients, clinicians must come across as non-stigmatising and limit the patients' feelings of guilt, and should communicate the following points":

  • Explain how HPV is transmitted, speaking about both how one contracts HPV and the activities associated with transmission.

  • Inform the patient that transmission to family, relatives, and partners does not occur through routine physical contact; rather, the virus is transmitted during common sexual activities. Encourage the patient's partner to be tested and to adhere to safe sexual practices.

  • Provide an overview of what the HPV-associated diagnosis means in terms of treatment and outcomes. A diagnosis of HPV-associated head and neck cancer positively affects overall survival and progression-free survival.

  • Explain that for the patient's family, including children, preventive measures should be taken. Each country has different guidelines; however, in many countries, HPV vaccinations are available for children aged 11 to 14 years. The vaccines are given to this age group before sexual exposure to protect them against HPV genotypes.

Recommendations Largely Speculative

The paper would have been more helpful had there been more input from the patients themselves, according to Maura L. Gillison, MD, PhD, Ohio State University Medical Center, Columbus.

Dr Maura L. Gillison

"The recommendations are quite speculative in terms of the needs of patients because we don't have data from the patients' perspective about what their true needs are," Dr Gillison told Medscape Medical News.

"Many of the references that the authors cite on links between sexual behavior and risk of cancer and oral HPV infection are based on the literature, and there, at least, the guidelines are grounded in data. But with regard to things like the psychosocial impact of the diagnosis on patients, if you look carefully, there is only one reference, and that one is based on a survey on qualitative research in 10 patients with head and neck cancer. And that's really all the data they have," she said.

"This paper gets us to think about what things we should be asking our patients," she said.

"For example, we need to ask them whether a diagnosis of HPV-positive head and neck cancer is a particular source of stress, over and above a diagnosis of head and neck cancer itself. Is it more stressful in terms of relationship matters than head and neck cancer diagnoses overall?" Dr. Gillison said.

"We need to ask patients whether they have sought information on their own, and, if so, what sources have they looked for, do they trust those sources, do they feel confident in the information they received, do they still have questions about their diagnosis?" she said.

"Then there is the whole question of how effective is the information? There's a lot of science behind meeting the information needs of patients, and tailoring it to their educational level, and there has been no research whatsoever in that area," she pointed out.

"The recommendations in this paper are as good as they can be based on expert opinion, but the bottom line is there's very little data on what patients need, what their priorities are, what their sources of stress are, and does the diagnosis change their sexual behaviour. Kudos to the author for writing the recommendations and focusing awareness on the issue, but it also brings to light how little data there are from the patient's perspective," Dr. Gillison said.

Dr Reich and Dr Gillison have disclosed no relevant financial relationships.

Ann Oncol. 2016;27:1848-1854. Abstract

Follow Medscape Oncology on Twitter: @MedscapeOnc


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.
Post as: