Narjust Duma, MD, is a faculty member in the Division of Hematology and Medical Oncology at the University of Wisconsin. She is a medical oncologist with a clinical and research focus on thoracic malignancies, with a particular interest in women with lung cancer. Dr. Duma is the principal investigator of the Sexual Health Assessment in Women with Lung Cancer (SHAWL) Study, the largest study to date evaluating sexual health in women with lung cancer. You can follow her on Twitter.

Although lung cancer remains the leading cause of cancer death in both men and women in the United States, advances in detection and treatment have increased people’s chances of living a long time after treatment ends. Currently, there are an estimated 384,000 lung cancer survivors in the United States, which accounts for 4% of all adult cancer survivors. And this number is increasing.

Lung cancer survivorship starts the day of diagnosis and lasts until the end of a person’s life. Several aspects are unique to people with lung cancer, from shortness of breath to the stigma that can be associated with the disease. But 1 aspect of living with and beyond lung cancer that is often not discussed is sexual health. Sexual concerns are common in people with lung cancer and survivors. However, people with lung cancer receive significantly less information on this topic compared to when the cancer involves a sexual organ.

Sexuality is a key part of a person’s sense of self, and sexuality can be an essential form of expression that helps maintain interpersonal connections, relieve suffering, and provide meaning. Sexuality does not refer only to sexual intercourse. It also includes other types of affection, including kissing, self-stimulation (masturbation), and other forms of intimacy like cuddling and sex talk. Sexuality is experienced and expressed through thoughts, feelings, and behaviors. Lung cancer treatments and the emotional suffering that comes after a diagnosis of lung cancer can affect all aspects of sexuality.

Shortness of breath, fatigue, body image issues, decreased sexual desire (libido), and emotional distress are often factors that affect sexual health in people with lung cancer. These complaints often worsen during treatment. Researchers have estimated that sexual problems affect most people with lung cancer. Also, data has shown that most of these sexual issues do not improve after treatment is completed, and people with lung cancer can experience sexual problems for years if nothing is done to address the problem.

Sexual problems are not often discussed during oncology visits, which are often limited in time and focused on cancer treatments, other potential side effects, and the results of the most recent CT scans. Unfortunately, this can make patients feel like their sexual health is not important and should not be addressed. Yet problems with sexual health have been associated with more and/or worse symptoms, including pain. Sexual health issues can also increase tension within domestic partnerships and increase the distance between couples.

Having the sexual health conversation with your doctor

There are several barriers that may hinder the discussion of sexuality for people with lung cancer, including:

  • A lack of adequate training for doctors

  • The assumption that sexuality is only about intercourse

  • The assumption that people over the age of 65 are not interested in having an active sex life

  • Thinking that treatments are not available

  • Having a low comfort level discussing the subject

However, people with lung cancer who have received treatment for sexual dysfunction report improvement in their quality of life and better communication with their partners. That’s why communicating with your health care team about sexual health concerns is so important.

Either the patient or their doctor can initiate the conversation about sexual health. Regardless of who starts the conversation, sexual health issues should be addressed. The first time you address the issues with your doctor or other members of the health care team can be filled with emotions. Most doctors will respond positively to questions about sexual health. They may provide referrals to specialists based on the issue that needs to be addressed, from physical therapists to family counselors.

3 things to keep in mind when talking with the health care team about your sex life

1. Remember that issues with your sex life are medical conditions.

This means your insurance may cover related doctor’s visits and treatments. Before visiting a sexual health specialist, contact your insurance company to confirm your specific coverage and co-pays. Over the years, I have learned that many sexual problems can be solved with inexpensive treatments, including vaginal lubricants, counseling, and home exercises provided by a physical therapist. For example, a change in sexual positions during intercourse can relieve shortness of breath for some people with lung cancer and improve their sex lives.

2. Consider if you want your partner to be present during conversations with your health care team.

This is an important decision to make before addressing sexual health issues with your doctor. This can be challenging for some couples, and communication is vital while making this decision. It’s also important to acknowledge that patients without partners can have sexual health issues, too. It’s also important to recognize that sexuality involves more than intercourse. Masturbation is often an essential part of a person’s sex life.

3. Think about ways to start the sexual health conversation with your health care team.

Living with lung cancer should not mean having to give up your sexuality. If you have enjoyed a close sexual relationship and intimacy before cancer, this can continue during or after completion of treatment.  Sexuality is about emotional connection and the expression of intimacy.

The following phrases may help to open a conversation with your health care team:

  • “I have read that sexual health issues are common in patients with lung cancer, and I would like to talk a little bit about this.”

  • Before the start of a new treatment, ask: “How might this affect my sexuality?”

  • “It is hard to talk about this subject, but I want to discuss how my cancer has affected my intimacy.”

  • “My physical relationship with my partner has changed since the diagnosis of lung cancer. I would like to discuss this with you and find solutions.”

  • “My libido has decreased. Can we discuss this?”

  • “It is difficult to be with my partner since I started treatment. This is bothering me.”

  • “What can we do to regain my experience of intimacy with myself and/or with my partner?”

You are not bothering your doctor by asking these questions. We as doctors want you to feel empowered to address sexual health issues. If you do not feel comfortable discussing this subject with your cancer care team, you can also bring it up with your primary care physician. 

Remember that a lung cancer diagnosis does not make your sex life and intimacy irrelevant. Sexuality is part of our identity, interpersonal connections, and a way of communicating with our loved ones. It’s important to talk with your doctors about how you can maintain this important part of your health if you are living with or beyond lung cancer.