For patients with cancer and cancer survivors, sexual dysfunction and reproductive health concerns are often the elephant in the exam room—a significant quality-of-life issue that both patients and clinicians struggle to discuss openly and effectively. At the recent NCCN Policy Summit on Sexual and Reproductive Health in Cancer Care, a panel of experts discussed the current state of sexual and reproductive health care in oncology, identifying key barriers and challenges to open and effective communication while proposing strategies for improved care delivery.
Moderator of the session, Clifford Goodman, PhD, an independent health-care consultant, was joined by Laila S. Agrawal, MD, a hematologist/oncologist at Norton Cancer Institute, Louisville, Kentucky; Sean Kern, MD, a urologic oncologist and Associate Professor of Surgery, Murtha Cancer Center, Uniformed Services University and Walter Reed National Military Medical Center; Jennifer Barsky Reese, PhD, FSBM, Associate Professor, Cancer Prevention and Control Program, Fox Chase Cancer Center; Rebecca Spence, JD, MPH, Chief Ethics Counsel, ASCO; and Ana Tergas, MD, Assistant Professor, Division of Gynecologic Oncology, Department of Surgery, City of Hope National Medical Center.
Impact of Cancer Diagnosis and Treatment on Sexual Health
The biological impacts of cancer treatment on sexual function are wide-ranging and may vary depending on the type of cancer and the specific treatments employed. Dr. Agrawal provided a comprehensive overview of these effects, emphasizing that “every single cancer treatment we have has the potential to impact somebody’s sexual health.”
Chemotherapy, for example, can cause physical changes such as hair loss, weight changes, neuropathy, and fatigue, all of which can affect sexual function. Hormonal therapies may induce menopausal symptoms, including low libido, hot flashes, night sweats, and genitourinary syndrome of menopause. Surgery, particularly those involving the removal of reproductive organs or breast tissue, can impact sensation, arousal, and orgasm. Radiation therapy can lead to vaginal stenosis, pelvic floor dysfunction, and other complications that may make sexual activity painful or difficult. In addition to the physical effects, cancer diagnosis and treatment can also take a significant psychological toll on patients, affecting their body image, self-esteem, and overall desire for sexual intimacy.
“Unlike other types of physical quality-of-life effects, which tend to dissipate or improve on their own over time, sexual dysfunction stands out in contrast, because it does not typically improve on its own,” Dr. Reese explained. “This highlights the need for proactive interventions to address sexual health concerns in cancer patients and survivors.”
Reproductive health is another critical consideration, particularly for adolescent and young adults with cancer, who may not have completed their family planning goals. Dr. Kern underscored the importance of discussing fertility preservation options with younger patients at the time of diagnosis, as delaying these conversations until after treatment may limit their choices. “If somebody hasn’t sperm banked before their treatment for chemotherapy or surgery, they’re going to need assisted reproductive procedures to have babies in the future,” he explained. “Sometimes, it is not possible to have biological children after certain treatments—for example, chemotherapy may result in an inability to produce viable sperm. This highlights the need for counseling on sperm preservation prior to treatment.”
Barriers to Discussing Sexual and Reproductive Health
Despite the significant impact of cancer on sexual and reproductive health, many barriers prevent patients and providers from having open and effective conversations about these topics. One of the primary obstacles is the lack of formal training for health-care professionals. “We do not learn about this in medical school, residency, or even fellowship training,” said Dr. Agrawal. This education gap leaves many providers feeling ill-equipped to address sexual health concerns with their patients, she added.
Even when providers are knowledgeable about sexual health issues, time constraints during appointments can make it challenging to delve into these sensitive topics. Dr. Kern emphasized the importance of creating space for patients to discuss their concerns, noting that “even 3 minutes can be a long time to address these issues systematically if that paradigm has been established.”
Another significant barrier is the discomfort and reluctance both patients and providers may feel when it comes to discussing sexual health. Dr. Reese explained: “If an oncologist isn’t raising the issue, which the NCCN Guidelines say they should, then it’s up to patients to advocate for themselves.” This can be particularly challenging for patients who are already dealing with the emotional and physical toll of cancer treatment.
The lack of evidence-based solutions, especially for female sexual dysfunction, may also contribute to hesitancy in addressing these concerns. “For females who have issues with sexual health, the available treatment options are limited and even more limited when you talk about cancer,” Dr. Kern acknowledged. “I don’t have a pill, and I can’t offer surgery that may get you to that level of expected sexual pleasure.” This can significantly impact one’s quality of life, so breaking down barriers to discussing these issues is important.
Unlike other types of physical quality-of-life effects, which tend to dissipate or improve on their own over time, sexual dysfunction stands out in contrast, because it does not typically improve on its own.— Jennifer Barsky Reese, PhD, FSBM
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There are also disparities in how sexual health is addressed for women compared with men. Dr. Reese cited research showing that “approximately 60% of male cancer survivors had been informed about potential sexual side effects of their treatments compared with 28% of women.” This gender gap in sexual health discussions is rooted in a long history of neglecting female sexual pleasure as a legitimate medical concern, she added.
Improving Patient-Provider Communication and Care
Addressing these barriers requires a multifaceted approach, including improved education and training for health-care providers, the development of evidence-based interventions, and a concerted effort to prioritize sexual and reproductive health discussions as an integral part of cancer care. Dr. Agrawal stated: “We really need to understand that sexual health for women is an important issue, and it goes beyond vaginal penetration.”
According to Dr. Agrawal, using standardized language and screening tools may help providers initiate conversations about sexual health more consistently and comfortably. She suggested this simple approach: “One way to bring up this conversation is by stating these concerns are very common and then following it by asking a specific question…. That takes 10 seconds.”
Providing referrals to specialized sexual health clinics and resources is another important strategy. Dr. Agrawal noted: “If cancer centers have developed sexual health programs, it can just be a referral to that program. From an advocacy, policy, funding, and payer standpoint, if we can support and build these resources, it doesn’t have to take that much time.”
According to Dr. Kern, it’s crucial to engage partners and caregivers in discussions and decision-making. He encourages family members to attend appointments, ask questions, and take notes.
Dr. Reese also highlighted the importance of considering the interpersonal context of sexual activity and intimacy: “We hear from many partners of breast cancer survivors, ‘I don’t know how to touch my partner anymore. I don’t know what she likes anymore. She doesn’t want sex with me anymore. What do I do? I don’t want to hurt her.’”
Ultimately, the panelists agreed that improving patient-provider communication and care in sexual and reproductive health requires a multidisciplinary approach. “Cancer care has got to be done in a multidisciplinary fashion, and sexual and reproductive health must be part of that whole treatment paradigm,” said Dr. Kern. “That’s the conversation we should be having across the cancer community.”
Envisioning an Ideal Future for Sexual and Reproductive Health Care
As the panel discussion drew to a close, the experts were asked to envision an ideal future for sexual and reproductive health care in oncology. Their responses painted a picture of a transformed system that prioritizes accessibility, inclusivity, equity, and evidence-based care.
Dr. Tergas emphasized the importance of creating “an inclusive, nonjudgmental environment,” where patients feel comfortable discussing their sexual and reproductive health concerns. Dr. Spence added that an equitable system would “ensure that all patients have access to the best care, no matter where they live or where they are.”
Dr. Reese stressed the need for evidence-based interventions that are available to as many patients as possible, and Dr. Kern focused on the issue of insurance coverage and affordability, particularly for fertility preservation. “Patients often have a limited amount of time that’s covered by their insurance from the time of diagnosis, so they end up having to pay to store their sperm for 5 years or more,” he explained.
In an ideal future world, said Dr. Agrawal, “patients have access to knowledge, specialized sexual health services in their communities, and financial access because of coverage and policy and availability.”
Achieving this vision, the panelists agreed, will require a concerted effort from health-care providers, policymakers, insurers, and patient advocates. It will involve breaking down silos and fostering collaboration across disciplines to ensure that sexual and reproductive health is seamlessly integrated into routine cancer care and survivorship.
However, progress is underway. “We’re getting more evidence-based, supported strategies for addressing female sexual health through a biopsychosocial framework,” Dr. Agrawal concluded. “We are getting the data, and we’re developing the solutions, but now we need the policy piece to make these treatments accessible to patients.”
DISCLOSURE: All panelists reported no conflicts of interest.
