Talking about a cancer diagnosis can be tough.
Talking with friends, family, and others about a cancer diagnosis linked to HPV can be particularly challenging for many people.
Memorial Sloan Kettering Cancer Center (MSK) clinical social worker Victoria Lassen has counseled people with cancers linked to HPV — the human papillomavirus. These include certain forms of cancer of the cervix, throat, anus, vulva, and other cancers.
HPV is the most common sexually transmitted infection. The CDC says: “HPV is so common that nearly all sexually active men and women get the virus at some point in their lives.”
Most people will clear the virus naturally from their body. And vaccination against HPV, which began in 2006, has proven effective in driving down HPV infection, preventing cancer, and saving lives.
However, most adults haven’t received the vaccine. And the virus can linger in some people for decades, in some cases growing into cancer. Each year, roughly 45,000 HPV-associated cancers are diagnosed in the U.S.; 25,400 cases are in women and 19,900 are in men.
Victoria Lassen shares how she has helped people with HPV-related cancers.
What concerns do people with HPV-related cancers share with you?
Many people talk about feelings of shame, guilt, and embarrassment — particularly in talking about their cancer diagnosis with family and friends. With HPV-linked cancers, there is sometimes a sense that it could have been preventable or that the person did something to cause the cancer.
But that’s simply not true. HPV is very common. I’ve worked with people from their 30s all the way into their 70s. People need to understand that HPV infections are not their fault and neither is cancer. It’s an illness — not a moral failing. Sometimes these feelings of shame are an attempt to take control over a situation that the person really had no control over.
What advice do you give people?
Instead of trying to find a reason behind what’s happened, the focus can be shifted toward meaning. By exploring how they feel, they can move toward shame resilience — and cultivate it. That’s the idea that you reframe feelings of embarrassment and guilt by moving toward kindness and compassion for yourself and others.
Shame thrives in isolation and secrecy. Joining a support group, talking to a counselor, or having honest conversations with loved ones you trust can help you stay connected to people and learn from their experiences.
How else can support groups and counselors help?
Support groups help normalize the person’s experience with cancer. They help combat isolation through connection — the person is not alone in their experience.
These supports can also help a person navigate difficult conversations they may want to have about their diagnosis with family and friends.
For people facing an HPV-related diagnosis, it can also be helpful to challenge any negative thoughts and to ask themselves: “Is this thought helping or hurting me right now? Would I want a friend to feel this way?” Talking with a social worker or people who know what you’re going through can provide this sounding board.
What has proven helpful to people when they tell loved ones about their diagnosis?
First, it’s OK not to have answers or to not feel ready to share. Particularly when a person asks a question that seems to be coming from their own fear and emotion — as a cancer patient, you do not have to carry all of your own emotions and someone else’s too.
When preparing for these conversations, it is useful to plan what you want to do. Who needs to know first — is there an inner circle? Making a list can be useful. Plan how and where you want to tell people. Do you want to do it in a conversation or in an email? Would you prefer to tell everyone you want to know or tell a few trusted people and have them give the information to others in a way that honors your needs?
The people you tell may have questions about HPV and cancer. It’s helpful to decide ahead of time how you want to handle questions. For some people, it works best to set gentle boundaries. You can say, “I’ll share more when I learn more from my doctor.” Or, “I’m not comfortable talking about this right now.”
For other people, it may feel right to educate their loved ones about HPV — about how common it is, and that the HPV vaccine can help prevent infections and cancer. For some people, talking openly about HPV and the fact that it can cause cancer helps destigmatize it and gives them a sense of control.
What about when people ask, “How can I help?”
It can be useful to plan for this question. It’s totally fine to respond, “I don’t know yet.”
But it’s also OK to be specific — suggestions such as: Could you make dinner this week? Could you help drop the kids at school? Would you give me a ride to a doctor’s appointment? Would I be able to use you as a sounding board to hear me vent?
Sometimes people with cancer fear they are a burden. But helping someone who needs it can deepen the connection for both people.
What should people keep in mind as they go through treatment?
Self-care is important. Part of self-care is protecting your energy by deciding how much you want to share. For example, you might have a designated person send an email to those you want to be updated on your condition instead of having many conversations, which can be exhausting.
Also, it can be helpful to find something that helps you de-stress after difficult conversations. That could be a walk outdoors. Or asking someone for a hug. Or something as simple as remembering to drink a glass of water right after the conversation might be helpful to feel better after a challenging conversation. Figure out what helps you de-stress and plan for it.
When you are facing cancer, having compassion and empathy for yourself is crucial.