Talking about Women’s Sexual Health after Cancer: Why Is It So Hard to Move the Needle?

Précis

Despite increasing calls to integrate sexual health into routine cancer care, the majority of women diagnosed with cancer do not receive information about how their cancer treatments will affect their sexual health. With the significant challenges that exist to clinical discussion of sexual health, efforts on multiple fronts are needed to close the gap in the care of women diagnosed with cancer.

Around half of women treated for cancer report cancer-related sexual concerns.^1–3 Common problems include those that are physical (e.g., vaginal dryness, discomfort during intercourse),^4–8 psychological/emotional (e.g., decreased sexual interest, body image distress, loss of femininity)^9–13 and interpersonal in nature (e.g., changes in sexual scripts, loss of sex and intimacy).^11,14–16 There is a strong evidence base suggesting that sexual problems are not limited to women with breast or gynecologic cancer diagnoses but rather are common and distressing for women diagnosed with a range of different cancers (e.g., colorectal,^2,17–19 bone marrow transplant,^20–22 head and neck).^23–25 Unlike other post-treatment health concerns that improve over time (e.g., pain), without intervention sexual concerns tend to persist for women with cancer, leading to long-term sexual distress and potential negative consequences for women’s individual and relationship well-being.^26–29 Further, if unaddressed, sexual problems can also compromise cancer treatment or prevention efforts. For example, problematic side effects of long-term cancer treatments, including difficulties with sexual arousal and desire, are among the key causes of early discontinuation or non-adherence to estrogen-reducing treatments or ovarian suppression for women with breast cancer.^30–33 Additionally, women who carry a hereditary cancer mutation gene conferring high risk for breast and ovarian cancer, concerns about sexual side effects are a central reason for either delaying or ignoring recommendations for risk-reducing surgeries.^34,35 In sum, unaddressed treatment-related sexual dysfunction – as well as concern about potential sexual problems – potentially undermines care and directly compromises patient health-related outcomes in all women who undergo cancer-related treatment.

As both the prevalence and the persistence of sexual problems for women with cancer have been clearly established,³⁶ researchers and clinicians have routinely called for greater attention to sexual health for women with cancer. Authors of a number of recent “white papers,” systematic and narrative reviews, and editorials about this subject in academic and clinical outlets all conclude there is need for greater communication between patients and providers, and intervention.^37–43 Yet despite these calls to action, the majority of women experiencing treatment-related sexual dysfunction suffer without help.⁴⁴ Although oncology clinicians generally acknowledge the importance of addressing sexual health for women who have been treated for cancer^45,46 and patients say they want their physicians to ask about these concerns,^47,48 communication about sexual health is not part of routine care for most cancer patients and survivors.^44,49 Results of a recent systematic review published in Journal of Cancer Survivorship demonstrate that across different studies and a range of cancer sites, fewer than one third of women with cancer reported receiving information about potential sexual side effects of treatments, compared to twice as many men with cancer who had reported receiving such information.⁴⁴

One potential explanation for this striking discrepancy is the belief that addressing sexual health with women who have been diagnosed with cancer is not useful because there is simply no “little blue pill” for women. There is a common assumption that the lack of a universal pharmacologic solution means there is little to offer the patient other than “just talk” – which is likely to end in frustration for both patients and clinicians. If there is no easy solution to any of the problems women experience after cancer, then some professionals may believe that it is not worth raising the topic at all. Viewed alongside findings of the Journal of Cancer Survivorship review, the belief that it is not worth raising the topic of sexual health is not only false, as we discuss later, but also underscores a troubling gender disparity in the context of sexual health treatment that must be acknowledged as we try to understand why it is so challenging to move the needle and close this gap in care. We contend that this perspective reflects problematic reasoning on a number of levels.

First, it is incorrect to assume that unless or until there is a singular pill or universal treatment that can easily reverse female sexual dysfunction, it is a fruitless endeavor to open this discussion. Using this logic, one could argue that psychological distress or pain should similarly be excluded from clinical interactions given that the causes and treatments for these conditions are often multi-faceted and a universal treatment is not available. Although one might argue that this used to be the case, screening for both distress and pain are now standard of care for all cancer patients,⁵⁰ in no small part because of the critical importance of these issues to patients’ physical and mental well-being. Just as a discussion of distress or pain is necessary for patients to obtain an accurate appraisal of their problem and determine an appropriate course of treatment, so the inclusion of women’s sexual health in cancer care is critical to lead to the same steps for women experiencing such concerns. Ironically, the assumption that female sexual dysfunction is always complicated misses the fact that sometimes patients and survivors actually need “simple strategies and solutions”⁵¹ in order to jumpstart sexual rehabilitation. The survivor who struggles with low desire, for instance, may be primarily in need of help managing the discomfort associated with vaginal atrophy. For many women, the feeling of wanting to avoid sexual activity begins to significantly shift when sexual activity simply no longer hurts.

Second, although a universal treatment (“magic bullet”) may not exist to treat women’s sexual problems after cancer, there is a commonly held belief that there are no efficacious solutions to the problems associated with women’s sexual health after cancer.^45,52 Yet in fact, efficacious treatments for women with cancer-related sexual problems are available and the evidence base is rapidly growing.^{41,51,53–56} Physical aids such as vaginal moisturizers and lubricants for sexual intercourse have garnered substantial efficacy data for women who have mild to moderate vaginal dryness and discomfort.^57–60 Such aids can also be helpful in ameliorating more severe sexual problems. For instance, a recent clinical trial found that for breast cancer survivors with severe vaginal dryness and pain during intercourse, topical lidocaine (used along with these anti-dryness aids) was effective at reducing pain, improving women’s sexual distress and function, and increasing their comfortable engagement in sexual intercourse.³⁹

Interventions using behavioral approaches may be even more promising when compared to physical aids alone, however, because they can address emotional, interpersonal, and other important physical factors that frequently contribute to sexual dysfunction and distress⁶¹ that the physical aids may not address, and because they can help teach coping skills that can help women maintain improvement over time.⁶² Behavioral interventions that include both education and skills-based instruction (e.g., in communication with partners about sexual health) have demonstrated evidence for their efficacy in women with cancer.^53–55 Internet-based behavioral interventions are of particular interest because they could address sexual problems in women who are without access to the multi-disciplinary sexual health programs generally limited to comprehensive cancer centers. For example, Schover compared a self-help web-based intervention offering education and guidance on solutions for sexual problems with the same self-help plus three sessions of counseling in a randomized trial in 58 breast and gynecologic cancer survivors and found that although distress and quality of life improved across both conditions, sexual function improved to a greater extent in those with the counseling.⁶³ In a more recently published trial, Hummel found that intensive internet-based cognitive behavioral therapy was effective at improving sexual function and related outcomes in 169 breast cancer survivors meeting criteria for sexual dysfunction⁵⁶ according to the Diagnostic and Statistical Manual of Disorders-IV (DSM-IV).⁶⁴ Findings of these trials suggest that recent web-based counseling interventions are highly effective in breast cancer or breast and gynecologic cancer samples^63,65 although they need to be tested in populations of women with cancer-related sexual problems outside of breast and gynecologic cancer. Telephone-based behavioral interventions could be helpful for reaching patients across a range of ages and levels of internet use and have gained some preliminary evidence in colorectal and breast cancer samples,^66,67 although larger trials of such interventions are needed. Face-to-face group interventions have also gained supporting evidence,^41,68 and are a promising choice for women with access to sexual health programs or similar services at their cancer centers. Community-based sex therapists or other mental health practitioners who have training in treating sexual problems in individual or couple formats can also provide key aspects of sexual rehabilitation for survivors. For instance, experienced clinicians could deliver clinical approaches which stand out as the most promising for addressing sexual distress and avoidance in women with cancer, including those that use mindfulness-based techniques. These can be delivered in an individual context (e.g., Brotto’s brief mindfulness-based interventions for female sexual dysfunction),^44,69–71 or in a couple-based context, through partnered sensual touching exercises (i.e., Masters and Johnson-style sensate focus exercises).^41–43,51 Experienced sex therapists are also well-versed in educating clients about how to use personal products such as vibrators which can not only enhance physical pleasure, but also promote physical rehabilitation.⁷² In addition, sex therapists can bring a well-spring of experience addressing other distressing issues for survivors such as diminished body image and decreased sexual self-esteem. In short, common interventions have been shown to be helpful in reducing the symptoms and distress associated with sexual problems; clinicians should therefore feel comfortable recommending them.

Third, the assumption that clinicians should shy away from sensitive or uncomfortable topics with cancer patients likely contributes to the clinical neglect of sexual health in this population. Yet this assumption has been challenged in recent years, as evidenced by the growing body of research studying the best methods for communicating about difficult issues in oncology such as palliative care, end of life, and “sharing bad news”, such as disease progression.^73–75 By way of comparison, take the example of a patient with long-lasting or potentially permanent neuropathy resulting from chemotherapy. Discussing the potential permanence of this treatment side effect is likely to be a tough conversation, yet it is critical because it both validates the patient’s concern and allows for a realistic appraisal of the patient’s situation, which is a necessary first step in making adjustments in order to cope effectively with these changes. Clinicians would likely agree that a discussion of this patient’s neuropathy is important to have even if there is no treatment available that can reverse these changes and even though the patient may hope for a different outcome. For a woman who faces permanent changes such as premature menopause or major body alterations secondary to surgery, clinical discussions serve a critical function by 1) helping her come to terms with this problem, and 2) allowing her to begin making necessary adjustments with regard to intimacy and/or sexual function. Even for women facing profound sexual changes, such as re-engaging in sexual activity after ostomy surgery, learning to increase engagement in non-intercourse focused activities and developing other ways to experience physical and emotional closeness and affection are key components of rehabilitation and adjustment that can help preserve both relationship and individual well-being.⁷⁶

Fourth, the cultural context in which such discussions occur must also be taken into account. Although American/Western culture is saturated with graphic, hypersexualized content, there is little encouragement – if not outright discouragement – to acknowledge and discuss the actual challenges women (and men) have about sex in ‘real life.’ In working with oncologists and other cancer clinicians, male providers have described to us their perception that if they raise the topic of sex with their female cancer patients this could be seen either as creating an awkward moment or as coming across as inappropriate, even as potentially “coming on” to the patient. Such concerns underscore the question of what it means to have a frank conversation about a woman’s sexual health in a cultural context that simultaneously hypersexualizes women while silencing them when it comes to their sexual health needs. Would providers feel such discomfort if the topic of women’s sexual health could be considered akin to any other domain of function? Would female patients feel more empowered to ask about treatment-induced sexual problems if sexual and vaginal health were not automatically connected to assumptions around sexual desirability and/or sexual activity? Further complicating the situation is that in a multi-cultural society and across a diverse population of women with cancer, there is potentially a wide range of meanings and value attributed to sexual function and health such that clinicians may worry about offending a patient because of religious or cultural assumptions. Moreover, historically, most oncology clinicians treating women with cancer have been male. Although clinician gender could theoretically influence clinical discussions of sexual health for women with cancer, current research has not uncovered clear patterns to this effect, whereas clinicians’ years of clinical experience may be a relatively more important factor in determining the presence of discussions about sexual health.⁴⁵

Finally, three additional commonly reported barriers to effective communication about women’s sexual health after cancer warrant consideration: time constraints, inadequate training in how to hold such discussions, and lack of payment for discussions of sexual health.⁷⁷ With a lack of both time and training, providers may understandably worry about opening a Pandora’s box when raising the subject of sexual concerns with a female patient,⁷⁷ particularly with respect to emotional or motivational issues that could surface such as low libido or relationship concerns.⁴⁵ Although clinical guidelines have emerged with recommendations for providers in addressing sexual concerns,^40,78–80 these guidelines neither solve the problem of time constraints nor are they likely to be employed by providers lacking basic skills and training in sexual health. Furthermore, without adequate compensation for their time, it is unreasonable to expect providers to spend considerable amounts of time with patients on this issue, such as by conducting detailed sexual health assessments, considering that this may result in lost clinical revenue for them. Clearly, there are real world constraints to sexual health communication for women with cancer. To have an impact, approaches to increase communication about sexual health for women with cancer can be developed that neither require substantial demands on clinicians’ time nor demand extensive training, which we discuss next.

How to move the needle: Approaches to training

In order to address these considerable challenges and move the needle on discussions of sexual health for women treated for cancer, efforts on multiple fronts are needed. Most providers need at least some education and training in how to communicate appropriately and effectively with their female patients about sexual issues. Provider-focused interventions could potentially include training in brief yet effective communication about female sexual concerns. Very few studies have tested interventions to this effect.⁴⁴ However, current efforts to improve provider discussion of sexual health for women with cancer are increasing, as evidenced by increasing numbers of symposia on sexual health being offered at various annual oncology meetings including those for radiation oncologists, palliative care clinicians and clinical oncologists in general. There is also increasing interest in evaluating provider-focused communication skills interventions on sexual health for women with cancer among researchers in this area, including one such intervention currently being pilot tested by the first author (JBR).⁴⁵

Ideally, education should be added early on to the training of medical and mental health professionals with regard to sexual health. Training for medical students should consider the range of issues covered within sexual health and include training in conducting a sexual history. Education about how sexuality is experienced for individuals at various stages of development and across different cultures is likely to foster a comfort in considering and discussing sexuality that will persist during one’s career. For instance, the oncology fellowship offers an ideal time for specialized training around issues related to sexual health in relation to the cancer trajectory. At a minimum, education for trainees in oncology could offer a background in sexual health and function, information about the etiology of sexual health changes due to cancer treatments, and current research evidence supporting treatments for these issues. Education could also include issues of sexual health for those who identify as a sexual minority, cultural diversity considerations, and methods for offering specific suggestions for coping with sexual concerns. A similar – yet perhaps even briefer and more pragmatic – approach could also be taken in the context of CME training to help clinicians currently in practice in improving their skills. For instance, whereas cultural influences on sexuality could be dealt with through a workshop incorporating self-introspection and rich group discussions for medical trainees, it could be approached in a more straightforward way for those in practice, such as by teaching clinicians skills in asking patients to clarify culturally-based sexual needs and preferences.

Another idea is to flag patients with sexual concerns and other health-related quality of life issues using patient-reported assessments in the clinic (among other health-related quality of life concerns) in order to facilitate sexual health discussions. A range of validated sexual function scales exist that effectively capture women’s sexual function and distress after cancer (see Jeffery et al. for a review),²⁰ and one such measure could be added to patients’ self-reported questionnaires at a consult or follow-up visit to identify patients in need of further assessment and treatment. Yet many clinicians may be wary of adding more “red flags” to trigger clinical responsibilities when already feeling pressed, and such efforts have demonstrated limited and mixed results at increasing discussions of sexual concerns in clinic visits with cancer patients at present.^81,82 Ultimately, provider-focused communication skills training interventions and patient flagging interventions may be most effective if combined, yet this combination has not been evaluated.

A patient-focused approach is also critical to move the needle on discussions of sexual health for women after cancer. Interestingly, some clinicians have reported that when their patients brought up sexual issues, they themselves report being more likely to raise sexual concerns with other patients in the future,⁴⁵ perhaps because this clarifies the importance of the issue to them. In the same vein, recent qualitative work suggests the central role of the patient voice in driving clinical discussions of sexual health.⁴⁵ Patient coaching interventions could help activate patients to engage their providers in discussions of sexual health, as other studies have sought to do in encouraging patients to raise issues of pain with providers.^83,84 On an encouraging note, we are aware of several projects under development which aim to enhance patient-provider communication about sexual health in cancer by focusing on activating patients to raise the topic with their cancer providers.

How to move the needle: Approaches to clinical inquiry

There are practical considerations that must be considered in beginning the task of clinical inquiry around sexual health for women with cancer. Some may wish to approach the issue by separating out the topic of women’s sexual health from sexuality and the act of sex, as when addressing female sexual health after cancer by querying aspects of function such as vulvo-vaginal health (e.g., “have you had any vaginal dryness?”). Using this model, vaginal dryness and discomfort could be assessed by focusing on the bothersome nature of this symptom without addressing whether the dryness interferes with sexual activity. However, we would argue that this approach alone falls short because it misses other critical problems caused by cancer treatments, such as low libido, and more importantly, because it does not acknowledge a women’s right to sexual health regardless of age, partner status, or sexual activity. Asking a single broad question during assessment may be a critical starting point. For example, recent guidelines issued by the National Comprehensive Cancer Network state that patients should be asked about sexual function at regular intervals, and suggest using broadly framed questions, such as by assessing patients’ concerns about their sexual function, activity, or relationships, with a follow-up that asks if these concerns are causing any distress.⁷⁹ A question like this one could become part of the standard review of systems but it also elevates sexual health to the level of other health concerns and sends the message that discussion of sexual health is normal and appropriate. Yet if this question is too broad, a clinician could ask with a question that directly addresses changes related to the cancer treatment, such as, “Have you had any changes in your sex life that you’d like to discuss?” Normalizing the question first (e.g., “Many women experience trouble with sexual activity or function after their cancer treatment”) can give patients permission to discuss sexual health,⁸⁵ but if the question is inserted into a review of systems alongside other common treatment symptoms and side effects, it may not be necessary. Rather than seek to find the “perfect question” to use to broach the subject of sexual health with their patients, it may be more important that clinicians find a question that feels natural to them, and therefore, will be most likely to be sustained in their practice. Regardless of the actual question posed, it is essential to underscore that this approach is not only for women who are partnered. We also note that body image and fertility concerns are highly related to sexual health and function for women with cancer, and should be assessed.^86–89

Conclusions

In sum, it is our belief that sexual health must be incorporated into patient care more systemically. While the majority of comprehensive cancer centers may not have multi-disciplinary sexual health programs, there has been enormous emphasis on the development and implementation of cancer survivorship care as described in the ground-breaking 2005 IOM report.⁵⁰ Patricia Ganz and others include sexual function as one of the ‘standard’ late effects to be covered in survivorship care planning.⁹⁰ As cancer survivorship services continue to expand, hospitals and cancer centers may be able to identify a particular clinician within their institution who is either trained to address sexual issues or who can act as a patient navigator and serve as a resource to liaise patients and survivors with other community or internet-based resources. It is possible that offering sexual health rehabilitation services of any scale could enhance an institution’s reputation by highlighting a commitment to patient-centered quality of life-oriented care. This may be a selling point for patients and thereby add competitive advantage for institutions. Given the burgeoning of cancer survivorship care as well as the growing availability of sexual rehabilitation strategies and interventions, it is high time to close this gap in care and deliver sexual health treatment to the millions of female cancer survivors who need it.