“This study comes from a very honest place. Because I want all patients out there with lung cancer to feel empowered to ask their doctor because they don't have to suffer in silence,” said Dr. Narjust Duma.
Oncologists and patients don’t often discuss sexual health and sexual dysfunction during routine visits and, according to Dr. Narjust Duma, that lack of communication needs to stop so patients with lung cancer no longer suffer in silence.
During a visit with one of her patients, Duma, a thoracic oncologist at the University of Wisconsin Carbone Cancer Center, noticed some discolorations around the patient’s armpit and found out that was how her and her partner were having intercourse as vaginal intercourse became painful as a result of lung cancer treatment. That visit, and a lack of available data, led Duma to start the Sexual Health Assessment in Women with Lung Cancer (SHAWL) study.
In a recent interview with CURE®, Duma discussed what the SHAWL study was, how little data assessing sexual dysfunction in women with lung cancer is available and what she expects the study to accomplish.
CURE: What is the SHAWL study and how did it come about?
Duma: The SHAWL study is the largest study evaluating sexual dysfunction in women with lung cancer. It is an international collaboration with the GO2 Foundation, in which we're hoping to interview over 300 women through validated questionnaires about the effects of lung cancer treatment and their sexual health. The story behind the SHAWL study is a personal story. Clinically, I focus in women with lung cancer. And I first noted that one of my patients was having certain discolorations around her armpit and I realized that unfortunately, that was a way in which she was trying to have intercourse, because vaginal intercourse was painful and produced bleeding. After some simple interventions, the sexual dysfunction improved as did her quality of life. And then I started asking my patients more frequently, what degree of sexual dysfunction they had, and I was extremely surprised that many of them were encountering sexual dysfunction, and many of them were no longer sexually active because of the symptoms that they were experiencing. That prompted the question, "Is this only my patients or is this also affecting patients across the world?"
What type of data is available when looking at sexual health and sexual dysfunction in women with lung cancer?
The data is very limited. The largest studies are from the ‘90s and very early 2000s. And that's before immunotherapy and targeted therapy were approved. We have over seven targets now for lung cancer. And immunotherapy is used for most patients. So, we have no data about the effects of these new therapies in women with lung cancer and the data that we have prior to that was also suboptimal. The data comes from very small studies of about 50 to 80 patients, in which most of them were focusing on one symptom instead of sexual dysfunction as a whole. And additionally, most of the studies included more men than women.
The SHAWL study is focused on women because, unfortunately, one of the incidences of lung cancer that continues to increase is the incidence of lung cancer in women between the ages of 30 and 39. So, we're hoping to capture those women as well. As we have discussed, I think it is very unfair that a woman would be receiving targeted therapy for years, particularly young women, and that we are expecting that they will not be sexually active during this time, knowing that sexuality is so important for relationships, for well-being, for self-esteem and for symptom burden and quality of life in general.
There seems to be more research on sexual dysfunction and sexual health in other cancers such as breast and ovarian. Why do you think there has been limited research regarding this topic in women with lung cancer?
I think there's two aspects to that. First, in breast cancer we know most patients with breast cancer have a hormonal-driven cancer and the patients that have early disease receive adjuvant hormonal therapy in which it blocks estrogen. So, they become immediately postmenopausal and with post-menopause comes vaginal dryness and sexual dysfunction and decreased libido. In the case of gyn(ecologic) cancers, many of these women receive pelvic radiation, which is associated with changes to the vaginal structure, and it can produce pain with penetration and other types of intercourse.
But for lung cancer, it's a new concept, particularly because lung cancer was not considered to be a disease that had many survivors. But, in 2020, survivorship in lung cancer is a reality. Things are changing, our patients are living longer, and we need to take this into account. I think there was this perception that patients with lung cancer only live a few months – one more Christmas, one more birthday, but that's not the case anymore. Some of my patients have been on targeted therapy for years. But in regard to your question, we don't associate lung cancer with prolonged survivorship, and also that there is no direct correlation with hormones and lung cancer, but we know that chemotherapy effects women's hormonal status, and as a consequence, they develop early menopause.
What is the overall goal of the SHAWL study and how do you anticipate results of the study impacting the care of patients?
The overall goal is to learn and change how we have been thinking and how we ask our patients about this. We want to determine what the problem is because right now, we don't know. We don't know exactly the prevalence. And like my grandma always said, 'If you cannot measure the problem, you cannot fix it.' That's what we want to determine, what is the exact problem?
Another objective is to bring awareness. When we continue to talk about the subject, we hope to empower women with lung cancer to bring up the conversation with their doctors, and that doctors feel comfortable asking about sexual dysfunction in women. We hope that the more we talk about, the more people feel comfortable asking about it, because we ask all our patients with lung cancer how is their shortness of breath. But we should also feel comfortable asking how their sex life is.
The third objective is to develop an intervention. The SHAWL study team feels that if we are asking women to take time and answer the survey, we want to make sure their results don't just end in a publication, but rather lead to an intervention.
What are some things patients should know about the study and how can they go about getting involved?
The first thing is that the study is completely confidential, and the results will not be shared with a spouse or doctor. The study is also quite quick. It takes between five to 15 minutes and at the end of the study, we have a blank text box where we want to hear from women, and we want to learn from them as to which symptoms they have and what they think is important.
As for getting involved, the lung cancer registry is run and maintained by the GO2 Foundation for Lung Cancer. Patients in clinical trials tend to have a better performance status and tend to have less comorbidities. But the lung cancer registry is there to give us a realistic view of patients with lung cancer.
And if the patients are already part of the lung cancer registry, and are a woman with lung cancer, they can go to the survey tab and can see the SHAWL study. For the women who are not part of this study, the woman that may have been recently diagnosed or underwent treatment several years ago, they can still join the registry, complete the basic information and fill out the survey. They don't have to answer all the lung cancer registry questions, you can just fill out your basic information, skip the whole questionnaire and then go to the SHAWL study.
I think it's very important to mention that we want to hear from all women with a history of lung cancer, because these will help us understand how this cancer affects their sex life. So, we not only want to hear from the women that are currently receiving chemo, but we also want to hear from women who had surgery only, and the women who had surgery and then chemo or the women currently only receiving immunotherapy. We want to hear and learn from all of them.
Is there something I may not have asked that you would like to mention?
We need to empower our patients to ask questions about what matters to them. As doctors, sometimes we decide what matters, but it's really what matters to them. And every day I'm reminded of that, about what is important to some of my patients that may not be important to the next patient. And I learned that when I discovered that my patients were having degrees of sexual dysfunction, and that was affecting their relationships with their spouses. It's about what matters to them and this study comes from a very honest place. Because I want all patients out there with lung cancer, to feel empowered to ask their doctor because they don't have to suffer in silence.