Expert aims to shed light on sexual health dysfunction in women after cancer treatment
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Key takeaways:
- Female patients with cancer often experience sexual dysfunction symptoms after treatment.
- The MUSIC program adds to the comprehensive aspect of survivorship care.
Kristin E. Rojas, MD, FACS, FACOG, is working to shed light on and address the multifaceted needs of female patients with cancer and survivors, including sexual dysfunction, with the Menopause Urogenital Sexual Health and Intimacy Clinic.
Rojas, assistant professor of surgical oncology in the DeWitt Daughtry Family Department of Surgery in the division of surgical oncology at Sylvester Comprehensive Cancer Center at University of Miami Miller School of Medicine, developed the program to improve quality of life for patients with cancer and survivors without increasing recurrence risk or limiting the effects of treatment.
“MUSIC adds to the comprehensive aspect of survivorship care...making sure that we not only address side effects that we talk about all the time, like hot flashes, joint pain, fatigue, etc., but also the more taboo topics that aren’t always brought up,” Rojas said in a press release. “One might think that these symptoms only impact patients with gynecologic or breast cancer who get estrogen-blocking medication, but it’s also women with other cancer types. In fact, anyone who gets chemotherapy, radiation or surgery can experience these issues.”
Rojas spoke with Healio about what led her to create the program, what it provides for women and how other institutions can implement a similar program.
Healio: Why did you create this program?
Rojas: Early on in my career as a breast surgeon in New York City, when speaking with patients with breast cancer to discuss their diagnosis and treatment plans, patients would often bring up their concerns about changes in appearance and in sexual function related to not only their breast cancer surgery but other treatments. Specifically, estrogen-blocking medications that we prescribe for our patients with ER-positive tumors.
These conversations came up a lot. However, time is a limitation of breast cancer surgery clinics, and these conversations often needed to be more in-depth discussions where we could offer patients a chance to tell their story, voice their concerns and figure out a personalized treatment plan for them.
This is where the idea came from to create a separate type of clinic visit where we only address the side effects of cancer treatment.
Many patients with breast cancer are postmenopausal, so some of those patients are a little bit older and everyone comes from different cultural backgrounds and has a different level of comfort speaking about sexual health and other women’s health topics. That is why I wanted to give it a name that patients felt comfortable using. My team and I came up with the acronym, MUSIC, which stands for Menopause Urogenital Sexual Health and Intimacy Clinic.
Healio: What does it entail?
Rojas: I was very fortunate to be part of a group that supported the development of this program in New York New York City in 2018. Under the mentorship of Patrick Borgen, MD, chair of the department of surgery at Maimonides Medical Center in New York City, we decided that women with a history of any type of cancer could be referred to our program, and it became quite popular.
When the pandemic happened, I moved to Miami to work at the University of Miami Sylvester Comprehensive Cancer Center, and they were very interested in having the program come along with me to South Florida. Because of the nature of the size of the cancer program in Miami and also the breadth of different cancer types that patients have across the NCI-designated cancer center, the popularity of the program exploded even more. We immediately had a waiting list of about 200 patients and were struggling to get everyone scheduled. As I am a breast surgeon, I could only offer the program on Tuesdays because the remainder of the week I am in the operating room or in breast surgery clinic.
Thankfully with the support of University of Miami, and the Sylvester Cancer Center leadership, we were able to hire two oncology nurse practitioners within the past 6 months. Now, we no longer have a waiting list — everyone gets scheduled. It has been very successful, and patients are really happy with the program.
The first patient visit is a one-on-one doctor visit for an hour and includes a detailed history-taking, gynecologic exam, after which we create a personalized treatment plan. I designed this program so that it is considered a subspecialist visit to a gynecologist where we focus on the anatomic changes that happen for patients experiencing genitourinary syndrome of menopause, which is one of the most common side effects of estrogen-suppressing medications.
I think of this program as a homebase for referral to other subspecialists. We often triage patients for some of their sexual health issues, and then determine after we implement our plan for this patient whether they might benefit from additional therapy from our colleagues in pelvic floor physical therapy, whether we get them plugged into our psycho-oncology team or if they need to see a sexual health therapist.
Oftentimes, I coordinate with the patient’s medical oncologist to make sure they’re on board with our plan and let them know what we’re up to. Because this is a subspecialist visit, we aim to tackle the problems that they’re having, but patients continue to be followed by their primary care team including their gynecologist.
For now, the program involves myself, two oncology-trained nurse practitioners, a clinic nurse, and a specially-trained MUSIC scheduling team that knows how to discuss these sensitive topics with patients and schedule them appropriately. The concept for the program is that we will continue to expand and include other subspecialists and hopefully other locations. In the future, I would love to be able to have pelvic health physical therapists, social workers, sexual health counselors and/or psychologists join our program.
Healio: How easy is it for other institutions to implement a program like this?
Rojas: Although I do have very specific training related to this, I encourage other institutions to create a similar program because there is a great unmet global need. There are easy interventions that do not require specialized training to be able to help our patients. It takes only a little bit of extra effort.
There are other programs available in the country, specifically the North American Menopause Society, that offer the ability to become a menopause specialist, and some of those tools from that program could help create the foundation of a program for addressing women’s sexual health after cancer treatment.
However, it is helpful to have someone on the team who has an oncology background because of the nature of navigating patients’ treatments at the same time that you’re trying to treat their other concerns.
The most important part is putting together the right team. There doesn’t necessarily need to be one person that’s both the surgical oncologist and gynecologist, as with our model. We recognize that’s not standard, but other leaders at other cancer centers could organize something similar that includes the right experts and home base for patients experiencing symptoms.
I encourage other centers to consider putting together a specialized program like this, and I want to encourage them to make it female focused because men’s oncology-related sexual health has been well addressed for a long time. For example, when patients with prostate cancer go to meet with their oncologist and surgeon, they learn about the potential impact on sexual function from day 1. It has been reported that more than half of those patients learn that information, and oftentimes, that information factors into their treatment plan.
For women, however, that has not been the case but that is changing now. I would like to see other programs that are focused toward addressing these specific issues for women because women with a history of cancer or who are undergoing treatment for cancer haven’t fully received the full care that they need for a very long time.
Healio: What is your ultimate hope for the program?
Rojas: Within the next year, we plan to expand the MUSIC program to some of our other satellite sites in South Florida, which includes a branch in Broward County so that we can help patients north of Miami. The plan is to continue to expand the program to other areas to improve access. That is my ultimate vision for the program. I would also love to see the program adopted across other institutions. I imagine other programs might have their own “flavor” of program depending on their unique resources, but I’d be happy to help guide them.
Healio: What did you present during the recent ASCO annual meeting?
Rojas: I chaired a session on managing estrogen deprivation toxicity in women with cancer where I spoke along with two of my esteemed colleagues about the impact of estrogen suppression therapy on menopausal symptoms and women’s sexual health.
We also had two additional talks as part of a bigger session where we tackled some of the under-addressed issues that come along with treating patients with endocrine suppression for cancer treatment, including optimizing bone health and addressing fertility concerns.
I also presented research outcomes from our MUSIC program. Historically, the dogma has been that patients on these estrogen-blocking medications might experience vaginal dryness and they are given vaginal moisturizers and then that’s sort of the end of the conversation. But what we found when we examined all of the patients referred to the MUSIC program was that patients oftentimes have untreated genitourinary syndrome of menopause, which is an umbrella term that includes dryness, but also painful sex and recurrent bladder infections. If the syndrome goes untreated, patients may develop anatomic or structural changes. So not only do they experience dryness, but the vagina can shorten and narrow over time, known as vaginal stenosis. For patients who engage in penetrative intercourse, oftentimes they report that penetration is completely impossible. There also may be changes to sensation, even in patients who don’t receive pelvic radiation, that leads to orgasm dysfunction. We are hoping to highlight and shed light on this because if we don’t address these issues, patients may potentially experience much more severe symptoms that can make sexual activity impossible, not just uncomfortable.
We also talked about how 33% of patients also reported that low sexual desire was their biggest concern after treatment. That ties into the same thread that it is not just vaginal dryness that these women are experiencing, but changes in libido from estrogen suppression can also cause significant distress.
Healio: Is there anything else that you’d like to mention?
Rojas: One other important reason for a program like this is that there’s a lot of misinformation out there about addressing patients’ sexual dysfunction after cancer treatment. Patients often come to the MUSIC program after having searched for information about their symptoms on the internet, and some have tried treatments that not only were ineffective but could potentially be dangerous.
One of those treatments is vaginal lasers, which are energy-based devices placed in the vagina promising “vaginal rejuvenation.” These devices were never FDA-approved to be used on the vagina. They are marketed toward women experiencing menopausal symptoms, vaginal dryness and painful sex. These procedures are oftentimes not performed by providers with specific training in the changes that happen to women during cancer treatment, even in aesthetic medical spas. Every October, these treatments are advertised to patients with breast cancer and other cancer types as a nonhormonal option for treating some of the symptoms that patients experience.
However, there are two randomized, placebo-controlled trials studying the effectiveness of these devices and they have shown that there is no difference in sexual function and vaginal symptoms. They are not only ineffective, but in 2018, the FDA released a warning to the manufacturers, of which at least seven companies received a letter from the FDA, asking them to roll back their deceptive marketing because there are real concerns that women are being harmed.
In the MUSIC program, we have taken care of many of the patients who have experienced burns, scarring and chronic pain from these procedures not covered by insurance. It’s underreported because patients are often embarrassed afterward and don’t feel comfortable talking about it. But for patients who have been harmed by these devices, they can report their experience to the FDA through the MAUDE database, which can be accessed at www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/search.cfm.
For more information:
Kristin E. Rojas, MD, FACS, FACOG, can be reached on Twitter @kristinrojasmd.
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Healio Interviews
Sylvester’s sexual health after cancer program expands to meet needs of women with cancer (press release). Available at: Sylvester’s Sexual Health After Cancer Program Expands to Meet Needs of Women with Cancer - InventUM | University of Miami Miller School of Medicine (umiamihealth.org). Published, Oct. 31, 2022. Accessed June 1, 2023.
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