Shame and stigma in patients with HPV-related oral cancers

asco-logo Every month or two I see a patient, usually a man with prostate cancer, who is concerned that if he has intercourse with his spouse, he will give her cancer. The question is asked with sincerity, and I can see the worry in the man’s eyes. His spouse is often equally worried but she often looks embarrassed too, almost as if she knows that he’s worried unnecessarily … but what if he’s not? I understand why they’re worried — it almost makes sense if you think about things very literally — and along with other questions about anatomy and physiology that I hear, this provides an opportunity to educate, inform, and dispel the myths, untruths, and worries that laypeople have about their bodies and cancer.

Last week I saw a woman who had been treated for tonsillar cancer. She’d been treated over the fall and was finally feeling well enough to think about getting back to what her normal life used to be. It is at this point in the cancer trajectory that I usually see people who have questions about resuming their sex lives. They may have tried to be sexual with their partner and discovered that something didn’t feel right or was downright painful. Or perhaps they didn’t feel anything at all and are worried that this is how it is going to be forever.

She appeared nervous, fidgeting in the chair, twisting the edges of her sweater, not really making eye contact.

“What I want to know is … I wonder if you could tell me …” her voice was small and soft and edged with hesitancy.

I gestured with my hand that she should continue.

“Well, he … Dr. X, that is … he told me it was HPV…”

“And what else did he tell you?” I asked, my voice as quiet as hers.

“Well, he said that in the thousands of patients he’d treated over the years, only two or three had partners who were also HPV …”

As she got the last part of the sentence out, she looked at me, her eyes wet.

“You see, I love my husband, and I don’t want to give him this … but I don’t want our sex life to be over.”

As I took a breath before responding to her, my mind flashed back to the late 1980s, when I worked in a clinic serving the gay community. Every day I had to tell a young man that he was HIV-infected, or that the cough he had was pneumocystis and that meant he had AIDS. Every month I gave a lecture — to nursing or medical students or community groups — and with every talk I explained that this was a disease, not a symbol of shame, and that stigma has no place in the wards where we are supposed to comfort and treat and witness the dying.

Now, almost 30 years later, I heard the whispers of contagion and stigma in the voice of a woman with HPV-related cancer. While the oncologist was right in telling her about the etiology of her disease, she was scared about what this meant, especially after everything she had read online. Dr. X’s reassurance that only two or three partners of other patients also had HPV did little to comfort her because she was afraid that her husband would be the fourth.

“I should probably stop reading stuff online, right?” she asked, a small smile at the corners of her mouth.

“Well, perhaps,” I replied, “But you have every right to learn more about your disease, or at least as much as you want to know.”

“But it scares me … and I’m so ashamed.” Her voice had once again grown small.

“So why don’t you ask me the questions you can’t ask Dr. Google?”

The small smile appeared again — most of my patients love the idea of calling the search engine Dr. Google — and she asked her questions.

The truth is that we really don’t know if patients such as this woman can pass on HPV to their sexual partners; we can’t say anything with 100 percent certainty about most things, despite our desire for certainty — not to mention our patients’. But I reminded her that the cancer had been treated, that she and her husband had been together for more than 20 years and the likelihood was that he had been exposed many years ago, just as she had. I acknowledged that as humans we need to know where and who and why and how about most things, but for most cancers, and especially with HPV-related cancers, the patient may never have the answers to those questions.

She interrupted me: “But what do people think of me? I am so ashamed … I live in a small community, and I can just see it in their eyes … I feel so dirty …”

Shame and stigma have been reported in both men and women with HPV-related oral cancers; the knowledge that HPV is sexually transmitted increased stigma and shame, but knowing that HPV infection is highly prevalent reduced these responses. Individuals may change their sexual practices as a result of the diagnosis, with some choosing to avoid oral sex in an attempt to protect their sexual partner(s).

We talked about the futility of focusing on the shame and the waste of her energy in dealing with it, even only in her head, because that is where shame resides. She described the love and support of her family and friends, and their lack of judgment and even knowledge about HPV — and I suggested that these are the opinions that count, not those of imaginary strangers who she feared may assign blame. I suggested that she get out of her head and focus on what she could see and feel: the love of her husband and her own desire to be who she used to be before cancer changed everything.

Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.

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