Last fall, the WomanLab team attended the Annual Meeting of the Scientific Network on Female Sexual Function and Cancer. This group (I’ll just call them “The Network”) is a group of scientists, researchers, students, patient advocates and others focused on increasing knowledge about female sexual function and cancer. The hope is that, with increased knowledge, clinicians will be better able to care for cancer patients and their sexual function, an important part of the lives of many survivors. At this annual, small but mighty meeting, 75-100 members and non-members come together in one place to share the latest findings, debate controversies in the field, and network. This year’s conference featured talks on how pelvic floor physical therapists might use cognitive behavioral therapy techniques to improve patient care, how mindfulness might be used to improve sexual function problems, updates on the state of the evidence for the women’s libido drug, flibanserin (sometimes incorrectly called “Viagra for women”), and much more (see the full agenda on the Network’s website).
It was my first time attending the conference. I am a patient educator and certified research nerd, so I could not wait to spend two days with this group of experts. I sincerely enjoyed my time at the conference and walked away with a few key insights I want to share with researchers, cancer survivors, and anyone who cares about the sexual function and quality of life of people with cancer.
Researchers are actively working to improve the sexual function of cancer survivors. This work is cutting edge, rigorous, and varied.
If you are a person with cancer concerned about your sexual function, know that you are not alone. During the conference I realized just how many amazing researchers, doctors and patient advocates are committing themselves to learning more about female sexual function after cancer—there is a whole community and it is fast growing! If you are a researcher interested in doing this kind of work, know that there isn’t one correct approach. The projects and initiatives of this trailblazing group came in many different shapes and sizes. Some were focused on educating physicians to talk to their patients about sex, others were developing innovative community programs for self-care, and some (*ahem* WomanLab) were taking their work online and trying to reach women across the globe (shout out to Will2Love, another awesome consumer facing website!). All of these projects, I realized, have such a critical role to play if we want to build a true health system that prioritizes the many needs of people with cancer.
Even “the experts” do not know everything. That is when our work is most exciting.
During a late-in-the-day presentation, my stomach was grumbling and my bladder was ready to pop. Still, I was trying as hard as I could to stay engaged with the presentation (and ignore my body’s cries for help). Then, something unexpected happened. Dr. Kevin Weinfurt, the PhD researcher on stage tasked with giving the 4:00 PM talk said, “This next section of the presentation is something I am struggling with. I thought I would share it with you to maybe help me out.” Dr. Weinfurt then explained a challenge he was facing in his work: “We need a measure for subjective arousal and there’s no answer for what it actually is.” Soft laughter could be heard around the room, making it clear that others had thought about and sympathized with this problem. My jaw dropped open. And then I smiled. For the non-research nerds out there, let me spell it out: this felt HUGE. Arousal is an important element in the theory of sexual function and researchers have tried for decades to define and capture a woman’s sense of her own arousal. Dr. Weinfurt is an expert in developing questions that try and capture elements of sexual function, yet here he was saying, “Look, this is a thing we have been studying for a while and, turns out, we do not have a clear definition for it all. We do not know what to do at this point.” Dr. Weinfurt’s reflections led to a flurry of comments from the other experts around the room. I’d forgotten my bodily needs and furiously scribbled down notes.
Here is why this insight matters: there is so much we do not know when it comes to sexuality and medicine—and, frankly, my limited experience tells me that this observation applies to most fields of research. As someone considering a career in research myself, I often wonder how we share all the interesting things we know with the public, while being honest and humble about what we don’t know. Here was one example: take a leap. Raise your concern onstage at a research conference. Tell your collaborators. Embrace the possibility of the unknown.
We all have something to learn from people who experience cancer and cancer treatment firsthand.
I was promised that the last session of the second evening of the conference would be the highlight. We were screening the film “Grace.” The subject of the film (her name is Grace) is a breast cancer survivor, mom of three, doula, and patient advocate. She attended the conference and spoke after the film was screened.
Grace organized her talk around a basic theme: things she needed doctors to know. It was brilliant. That being said, the reactions of the audience members were almost as good as the talk itself.
We nodded and smiled sympathetically as she explained how freaking hot she always was.
There were tears around the room as she carefully articulated the fear and confusion of finishing her cancer treatment, being sent home as a “survivor!” and realizing you have only taken the first step on a much longer journey—a journey that includes the sometimes painful process of getting to know your post-cancer self.
We howled in laughter, surprise, and shock when she told us what really worked for her libido and vaginal dryness: medical marijuana. Right in the vagina. (Note: While this is an intriguing idea and we are SO glad it worked for Grace, we haven’t found any research evidence about safety and effectiveness for most people).
Why does this observation matter? Well, even in a room full of experts on this very topic, we all gained new insights into the patient experience. In other words, (surprise, surprise) even experts do not know everything about the experience of cancer survivorship. If you’re a cancer patient, you already know this is true and don’t need to hear it from me. I encourage you to keep using your voice about all that you know. If you’re a care provider, listen up. And keep listening.
Leilani Douglas is a WomanLab writer and editor, patient educator and member of the Scientific Network on Female Sexual Health and Cancer. The views expressed here are her own and not necessarily representative of WomanLab as a whole.
Edited by Kelsey Paradise