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“Allowing these women to have a fulfilling life after cancer is one of the best things we can do as physicians,” says Talia A. Helman, MD.
In this interview, Talia A. Helman, MD, discusses the study, “Exploring Female Bladder Cancer Survivorship: Patient Perspectives on Sexual Health Challenges and Resilience When Receiving Bladder Sparing Therapies,” which she presented at the 25th Annual Fall Scientific Meeting of the Sexual Society of North America. Helman is a fourth-year resident at Emory University School of Medicine in Atlanta, Georgia.
This transcription was AI generated and edited by human editors for clarity.
My abstract is looking at female sexual health in bladder cancer. Specifically, I wanted to look at patients who have not received a cystectomy. We’re learning more about female sexual health and how it's affected by something like cystectomy. Traditionally, a cystectomy includes an anterior exoneration, including the vaginal wall, ovaries, uterus, and other pelvic organs, and so it can be very disruptive to a woman's sexual health and function. We have a lot of good studies that tell us that, too, and for many reasons, hormonal and anatomical, it makes sense why it's so disruptive to a woman's health.
I was curious, however, [to explore this in] women who are keeping their bladders, so women that either have non–muscle-invasive bladder cancer and are receiving intravesical treatment, or women that have muscle-invasive bladder cancer but have chosen to do a trimodal therapy approach with radiation, chemotherapy, and then TURBT. The reason I was curious about this is because women overall in bladder cancer have worse morbidity and mortality. This primarily relates to delay in diagnoses from what we've seen. For women who have non-muscle-invasive bladder cancer, they can often be going to the doctor continuously for [many] years to get these treatments. I wanted to know: does it have an effect on their sexual health and sexual function? What do we need to know about this in order to educate our patients or to do better as physicians? That's what inspired my project. I was inspired by the impact that a cystectomy can have on women and how much we have grown historically when it comes to treating these women.
At first we didn't offer neobladders to women, and that's because we didn't fully understand the anatomy of a urethra. A woman's urethra is a lot shorter than a male's. It was felt that their continence mechanism, so their sphincter, was at the bladder neck. So, if you did a neobladder, you couldn't safely resect what you needed to and maintain continence for a woman. However, after different studies looking at the actual anatomic and pathologic slides of a urethra, we found that the sphincter is a little bit lower, so you can safely do neobladders in women, which I thought was an interesting progression of history.
We [also] used to take out every single organ that we could in the pelvic organs for women when they're getting a cystectomy; we thought that was the right thing to do. We found out that a lot of women don't have cancer spread to their ovaries, so keeping their ovaries not only helps with fertility, but [with] other hormones that women need, and it reduced morbidity and mortality for these females. That's also why I got inspired [to do this research]. How can we look at a disease that mostly affects males, and what can we do to make the experience and the aftermath of that cancer diagnosis a little bit better for females?
This study was a pilot study. We had 18 participants that we were able to get ahold of and interview. I personally called women in our database that have had non–muscle-invasive or muscle-invasive bladder cancer that have not received a cystectomy. After informed consent, we went over the interview questions with them. I wanted to make sure that it was an actual interview vs a survey design, because I wanted to hear what these women had experienced. For a lot of women, they've been dealing with this bladder cancer diagnosis for years, so I wanted to hear their feedback and listen to them. Although our n is low, we only had 18 participants, it was still extremely informative.
From there, we interviewed the patients. We gave the female sexual function index survey for those that were sexually active. Then we also [included] their baseline characteristics, demographic information, tumor characteristics, stuff like that. The data that I am going to focus on is the interview data. There's not a lot of profound statistical data that we can gather from this, because our n is so low at 18.
For the sexual function index, you need to be sexually active in order to qualify to take the survey. Of the patients that we interviewed, only 5 of them were sexually active. Which, if you think about the diagnosis of bladder cancer, it's going to be older women. The main takeaway from those 5 women is that only 1 of the women had sexual dysfunction. It's hard to say [if it was due to] her bladder cancer or other factors such as depression or anxiety. We [did] ask about [these,] but with only 1 woman having dysfunction, you can't [attribute] blame to anything.
After doing a literature review about cystectomy patients and how devastating it is for female sexual function after having a cystectomy, [my main takeaway from this study is that] it seems that women tolerate the intravesical treatments well. They don't [seem to] cause too much disruption to their sexual health. Some of the quotes that we got from women were that at first they were scared or they didn't know what to expect, but then afterwards they realized that it didn’t have as much effect as they thought it was going to, especially on their sexual function.
Some women talked about the urinary symptoms. They had increased urinary incontinence or urinary urgency, which made them a little bit embarrassed when they were having sexual intercourse. One woman said that she just pees before she starts, and that's all she needs to do. [There were] stories like that of female resilience as they're going through a cancer diagnosis, and how to navigate that to have the quality of life that they wanted.
A lot of women talked about vaginal estrogen. Even among the women that were not sexually active or those that [said] bladder cancer didn't affect them at all as far as their sexual activity, many of them touched on the benefits of vaginal estrogen on lubrication and pain. We've seen this with our non-bladder cancer patients in the perimenopausal stage as well.
Some other interesting things that women talked about were this fear of everyone being down there. One woman said that everyone's always in your business. I really felt that as someone who's had to do these procedures on women. If you have fear of it, or you maybe had a bad experience 1 time, I can see how that affects people as they're getting their treatments.
One woman who it really affected said, "You get afraid of having sexual intercourse. You don't want to disrupt what's going on there. Your partner is nervous too. Everything is too close going down there." Another woman said, "It did at the beginning, and then it was okay. It was a shock when you have cancer, no symptoms. That made me not want to have sex, though. But after the surgeries, I take some breaks. I need some time." That was a common theme as well is that [after] women have their cystoscopies for surveillance of their bladder cancer, they usually took a day or 2 off of any kind of sexual activity afterwards, just for their own reasons. They couldn't really describe it; they just wanted a break. They felt that their partners were really receptive of that as well.
For the other cohort of patients, the ones that were not sexually active, it was [pretty] black and white. We'd ask, "Are you sexually active currently? Do you wish to be in the future? Do you have any interest in this?" For the women that weren't sexually active, they said, "Bladder cancer does not affect my sexual activity. I'm just not sexually active for X, Y, and Z." Maybe they lost their partner, maybe they're dealing with some health issues. They felt like it was a non-issue for them; out of all things in their life, bladder cancer was not the reason that they were not sexually active.
We would love to continue to increase the number of women that we're able to interview. We have a large database at Emory, but finding female patients is less common, and female patients that have non–muscle-invasive [disease] and that are sexually active are [even] less common. Our goal is to continue to increase the number of women we can interview.
To expand on that, [we want to determine] what to do with the information. I personally would like to focus on patient education. There have been a couple studies in the literature already of patients that were unaware of the effects of bladder cancer, specifically cystectomy. I think now we can expand that to intravesical treatments and endoscopic treatments. They were just unaware of any of the effects that would happen to them. Even after the oncologist does a great job talking to them about what to expect afterwards, it's still just so much information. To have a woman-specific education material [saying] "This is what's going to happen to your vagina," with pictures [would be helpful]. People are starting to do [this] here at Emory, which is [great].
Increasing awareness for our providers is [also] a huge thing that we still need to work on. There was a study that looked at how many providers counseled men on sexual dysfunction after cystectomy, and how many counseled women on sexual dysfunction after cystectomy. [They found] significant differences between pre- and post-op counseling of these patients.
Additionally, we have started to include vaginal estrogen therapy as part of our post-operative protocol for a lot of these patients. We have that worked into our EPIC flow. I think that's an [great] thing to come of this study so that patients are at least offered it. I also think it would be incredibly important to increase the awareness and number of referrals to sexual therapists for patients and their partners after they have any of these surgeries or a bladder cancer diagnosis. One of the questions we asked in the interview is, "is your partner still interested in sexual intercourse?" For some women, their partners are too sick or have passed away. But for the women that are engaged with their partner about this issue, it was so reassuring and relieving to hear how supportive their partners are and how they work through the nuances of having bladder cancer and sexual health. I think having more sexual therapists for our partners and our patients [as well as] more education for both would be a huge future step for this.
The overall take-home message for urologists is to continue to get to know your patient and ask them what their priorities and what their baseline sexual function is. From previous studies, we've seen that many women really value provider-initiated preoperative counseling on their sexual health, as well as printed out materials that they could read afterwards. Many women, even though they were told all these risks, didn't fully understand the magnitude of what was going to happen after surgery. Asking a patient if they are sexually active, if that's something that they value, or if that's something that they see themselves valuing in the future is a great way to understand their baseline and understand their priorities.
I was really excited by this study. I wanted to do something that we didn't know a lot of information about. Although it's a low number of women that we have currently, I think it's a huge step and can be truly transformative to our field in recognizing and understanding the importance of female sexual health in the context of bladder cancer care. There's an intricate relationship between these 2 domains, not only because they're physically so close together, but [because] it's a very personal experience to go through cancer. We can empower our female patients and [empower] health care providers to deliver more personalized and holistic care to our patients if they understand more about that patient's priorities and what they really hope for the future and their survivorship. As more and more therapies are coming out and as we're getting new technology, cancer survivorship is becoming even more important. Allowing these women to have a fulfilling life after cancer is one of the best things we can do as physicians.
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