Madison, Wis. — Just because you have lung cancer doesn't mean you shouldn't be able to have good sex.
Sexual wellness and quality of life go hand-in-hand, for both men and women. However, understanding the role of cancer and cancer treatments in inhibiting sex - especially for women - has been somewhat of a blind spot in previous research.
Enter the recently launched Sexual Health Assessment in Women with Lung Cancer (SHAWL). It represents the largest study to date exploring sexual dysfunction in women with lung cancer, and relies on the candid responses of patients and survivors to fill-in key knowledge gaps. The study's principal investigator, Dr. Narjust Duma, says SHAWL is the first step towards helping patients who may be suffering in silence.
"In my own experience seeing women with lung cancer, many are having significant sexual dysfunction and they've never been asked about it and we don't talk about it, it remains taboo," Duma said. "It is very important to determine the degree of the problem."
Duma, a lung oncologist and member of the University of Wisconsin Carbone Cancer Center, has made helping women with lung cancer her focus since joining the faculty in 2019. While that means directly treating women with the disease, it also means understanding and finding solutions to the side effects and consequences of their treatment, including sexual dysfunction.
It's not usually a topic her patients expect to come up.
"Many women are surprised when I ask questions about their sexual health," Duma said. "They may be thinking, 'I am alive with lung cancer, I should feel lucky.' But it doesn't mean you have to be miserable."
There are many reasons why female lung cancer patients may experience sexual dysfunction during or after treatment. Surgery on a lung can make sustained sexual activity challenging, while other therapies may cause things like extreme vaginal dryness or loss of libido. Even chronic dry mouth, another common side effect, can be a barrier to intimacy, as a lack of saliva can hamper the ability to comfortably kiss a partner.
Beyond the physical changes, there are psychological barriers, too. For example, Duma says some patients report body image issues after treatment. This may lessen the patient's own desire for sex, but also create worry and anxiety over how their partner views them.
There's also reason to believe that the number of women dealing with these issues may be growing. While the overall incidence rate of lung cancer is declining, the rate is increasing among younger women. With many women receiving treatment at a younger age, Duma worries that survivors may be silently dealing with sexual dysfunction for years or even decades after treatment.
The SHAWL study seeks to quantify this issue. Working alongside patient advocates Ivy Elkins and Jill Feldman - both women with lung cancer - Duma developed the anonymous, online questionnaire that can be taken by any woman who has or has had lung cancer. If that includes you, your participation is encouraged! Taking the survey is private and only takes about 15 minutes to complete. You can also refer a friend or family member.
Questions are primarily multiple choice, with an option to include additional comments or information at the end of the survey. Some questions are aimed at the measuring the effect of pain and discomfort during sexual activity, while others assess levels of sexual interest and pleasure. Participants are also asked about various aspects of their lung cancer treatment.
Through a lung cancer database, the SHAWL study was initially sent to more than 2,000 potential participants around the world, and Duma is looking to gather as many responses as possible before the end of the year. Ultimately, data collected from the questionnaire may be used to inform future clinical trials.
One recent event that slightly altered the trajectory of the study was the onset of COVID-19. The pandemic has affected all of our lives in various ways, and our sexual lives haven't been immune from that. As a result, Duma added some questions to the survey to account for the impact of the coronavirus.
"One of my patients mentioned that her vaginal dryness was finally better, but she now had two college students living again in her house and all her privacy is gone," she said. "So we're also interested in the various ways the pandemic is affecting the sexual lives of these patients."
Besides measuring the scope of these issues, Duma has a more practical reason for conducting this survey. By bringing sexual dysfunction into the open through the SHAWL study, she hopes that women will feel empowered to bring these issues up to their oncologist or primary care physician, who may be able to help.
"Historically, there has been a lot of stigma associated with women's sexuality, and we're trying to change that," Duma said. "We want to open the door, acknowledge that these issues exist and meaningfully address them."
Note: SHAWL can be taken on the Lung Cancer Registry's website. You will need to register for an account, but your survey responses will be kept anonymous.