Multiple studies have shown that sexuality and intimacy problems are common among patients with cancer, often beginning at the time of diagnosis and persisting through the continuum of care into the survivorship setting. Although these problems have been well documented, many patients and survivors do not feel prepared for potential sexual changes and often do not receive adequate support to manage sexual dysfunction.
According to Don S. Dizon, MD, Director of Breast and Pelvic Malignancies at Lifespan Cancer Institute, Providence, Rhode Island, communication barriers are partly responsible for this gap in whole-person cancer care. “In 2007, our group did a survey of members of the New England Association of Gynecologic Oncologists and found that about 85% of male and 73% of female respondents didn’t discuss sexual health with their patients. Time was certainly cited as a reason, as was the lack of resources locally. Indeed, while most said they were comfortable regarding the subject, less than half took a sexual history on the majority of their patients. This is just an example of some of the work needed on these issues,” said Dr. Dizon.
Intimacy Issues
Women treated for cancer often experience issues related to sexual health and intimacy. Unfortunately, data suggest that providers infrequently discuss these issues. “Intimacy can be impacted by so much more than body image. In fact, a cancer diagnosis and its treatment can impact every domain of female sexual health, from intimacy and desire to arousal and satisfaction. It’s important that those experiencing such issues know they are not alone and that, in fact, it’s really quite common. I would empower them to speak to their providers; although they might not be comfortable talking to their oncologist, often they will find a friendly ear in those who also were involved in their care—from their clinical nurse, infusion nurse, or even social worker,” said Dr. Dizon.
Asked about educational resources available to guide patients through these distressing issues, Dr. Dizon replied: “There are certainly books on this topic from my colleague Dr. Anne Katz, who has written them for both men and women. Most societies also have resources, including ASCO (through Cancer.Net) and the American Cancer Society (ACS).”
Sexual Challenges for Adolescents and Young Adults
Sexuality is a vital facet of quality of life for adolescent and young adults (AYAs) that remains understudied in patients with cancer. Sharon Bober, PhD, Founder and Director of the Sexual Health Program at Dana-Farber Cancer Institute, Boston, has studied the psychological profiles and challenges faced in this younger cohort of cancer survivors. “We know that AYAs with cancer have a much higher prevalence of sexual dysfunction than their same-age counterparts in the general population. We’ve published on AYA survivors of pediatric cancer who later develop several types of sexual dysfunction in their 20s, an age not typically associated with sexual dysfunction. Our current challenge is to go from understanding the problems to moving the clinical needle in addressing them,” said Dr. Bober.
According to Dr. Bober, although the oncology community has integrated conversations about fertility issues into routine clinical care, AYA sexual health issues are not part of routine care. “We understand that adding difficult discussions around sexuality into busy oncology settings is challenging. However, it’s important to note that, although sexuality is one word, it covers an umbrella of matters. Unlike symptoms such as fatigue or neuropathy, where the clinic parameters are fairly clear, when we think about sexual health, it may refer to sexual function, body image, relationship dysfunction, or other psychosocial aspects within the broad category of sexuality. So, it’s important to help clinicians navigate this territory,” explained Dr. Bober.
Dr. Bober stressed that interventions to improve sexual function should consider variability in psychosexual development, relationship status, and attainment of sexual milestones among AYAs. “Our research at Dana-Farber strongly supports the need for developmentally appropriate interventions and using approaches that account for biologic and psychosocial factors to improve AYA cancer survivors’ sexual function. Moreover, as the number of AYA survivors continues to grow, there is a pressing need for targeted information, education, and intervention around sexual health, intimate relationships, and body image,” said Dr. Bober.
Disparities Among Sexual and Gender Minorities
Sexual and gender minority individuals are people who identify as, but are not limited to lesbian, gay, bisexual, pansexual, asexual, transgender, queer, genderfluid, nonbinary, gender-diverse, gender nonconforming or whose sexual orientation, gender identity, and/or expression are not limited to binary constructs. According to a 2017 ASCO report in the Journal of Clinical Oncology, members of sexual and gender minority communities are at high risk for suboptimal access to cancer prevention, screening, and high-quality cancer care.1
“Our research shows that barriers to care in sexual and gender minority individuals are rooted in two directions. Patients don’t disclose their sexual orientation or gender identity issues, and even if they do, oncologists often don’t know what to do with patient information about these sensitive issues. There is also the mindset among oncologists that they treat all their patients equally, regardless of sexual orientation or gender identity, which conflicts with best practices of knowing the whole person in order to create patient-centered care,” said Gwendolyn P. Quinn, PhD, Endowed Chair and Professor, Department of Obstetrics and Gynecology, and Professor, Department of Population Health, NYU Grossman School of Medicine, New York.
Dr. Quinn explained that, to correct inequities and barriers to high-value cancer care, changes need to be implemented on the institutional level. “To make fundamental change, addressing sexual orientation and gender identity inequities needs to begin at the educational level, and it is definitely improving. Many of our survey data showed clinicians wanted this education. That said, there is great variability in how the subject matter is addressed. Also, no matter how much lecture time you get in medical or nursing school, it’s not enough. You also need to provide that training during clinical rotations, when residents are observing their attendings. How do you acquire this information? It is different from taking a complete sexual history, but when a sexual history is needed, those questions should be asked in ways that are affirming and culturally sensitive. How do you correctly disclose your own pronouns and ask for the patient’s pronouns? These interpersonal skills are generally best learned by modeling, not only during one’s training period but, equally important, well into the practice scenario,” said Dr. Quinn.
Asked about guidance resources for the oncology community, Dr. Quinn responded: “I recently coauthored a piece in the JCO Oncology Practice titled, ‘What Oncologists Should Know About Treating Sexual and Gender Minority Patients With Cancer,’ in which we offer insight into the health disparities experienced by sexual and gender minority individuals and strategies for improving the clinical encounter.2 We are also working with ASCO to test an oncology training method we’ve developed to see if it improves understanding of the issues faced by sexual and gender minority patients with cancer. ASCO, which is leading the way in addressing this disparity of care issue, has conducted a national survey to better understand the barriers and facilitators to the collection of sexual orientation and gender identity data within oncology practice and research to help identify gaps in data collection and care that need to be addressed to improve outcomes for patients.”
Dr. Quinn continued: “In general, we’re not going to provide different cancer care to sexual and gender minority patients; in other words, chemotherapy regimens wouldn’t be altered by sexual orientation or gender identity. However, we should provide tailored social support according to what goals the patient has for sexual quality of life and who their support people are—all of which may affect the patient’s decision-making. In short, to provide equitable care for the unique needs of sexual and gender minority patients with cancer, we need to develop and implement better tools and education for the oncology community.”
Unmet Needs
To shed light on the sexual function issues faced by women in the context of cancer, The ASCO Post spoke with Stacy T. Lindau, MD, MAPP, Director of the University of Chicago Medicine’s Program in Integrative Medicine (PRISM). “I’d been studying sexuality in the context of aging and illness for several years and published our findings in 2007 in The New England Journal of Medicine.3 After publication, one of my colleagues, S. Diane Yamada, MD, the Section Chief of Gynecologic Oncology at the University of Chicago, asked if we could translate this knowledge into better care for our patients with cancer. At the time, there were few clinical programs and limited scholarly work to inform an evidence-based approach to helping women preserve and recover sexual function after cancer. So, we hung our shingle and opened to all patients affected by cancer who thought a gynecologic approach would help. Most of our patients have been women with breast and gynecologic cancers, but we see all cancer types. And that was the beginning of PRISM,” said Dr. Lindau.
Although caution on these topics may come from an understandable place, avoiding vital medical information in itself is unethical. Our research shows that patients want their doctors to weigh in on their sexual function needs after cancer.— Stacy T. Lindau, MD, MAPP
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According to Dr. Lindau, although sexual dysfunction among women with cancer is well documented, getting that knowledge out into community practices has faced challenges. “It’s a concerning issue, one that our work at PRISM has addressed. First, we created a Web platform called WomanLab.org, which is a public-facing knowledge dissemination platform that aims to share everything we know about the preservation and recovery of sexual function after cancer. Everything we publish on that platform is there to fill a gap in knowledge. If high-quality, evidence-based tools from ASCO or ACS or others are out there, we point to those.”
Sensitive but Necessary Conversations
“As an example of one gap we had to fill, some women are interested to learn about anal intercourse as an alternative to vaginal intercourse after vaginal scarring due to radiation. There was simply nothing out there to help women with cancer or their doctors to discuss anal sex. We looked for the best available content and found it in Teen Vogue—so we highlighted Teen Vogue’s work, added other sources, and retooled the information for our audience. We’ve also been publishing our own clinical protocols and the tools we use in the clinic. They’re free to anyone,” said Dr. Lindau.
What about oncologists who are uncomfortable discussing intimate sexual dysfunction issues with their female patients? “I’ve thought a lot about this problem—knowledge that isn’t communicated is useless. I teach medical ethics in the doctor-patient relationship, and there is a clear ethos that sex between doctors and patients is outside ethical bounds. Of course, the ethics don’t preclude talking about sexual side effects of treatments, but it’s understandable that some oncologists might avoid the topic altogether for fear of saying something wrong or being misunderstood. Although caution on these topics may come from an understandable place, omitting vital medical information is itself unethical,” she continued.
“Our research shows that sexual function problems are very common during and after cancer—much more so than many of the complications we do discuss—and patients want their doctors to tell them they might have these problems. The science says they should hear it from the doctor who knows them best. It’s a work in progress, but we’ve come a long way in breaking down barriers. I’m hopeful that discussions on women’s sexual function after cancer will soon be routine,” said Dr. Lindau.
DISCLOSURE: Dr. Dizon holds stock or other ownership interests in InfiniteMD and NeuHope; has served as a consultant or advisor to AstraZeneca, Clovis Oncology, i-Mab, Regeneron, and Tesaro; and has received institutional research funding from Bristol Myers Squibb, Kazia Pharmaceuticals, Merck Sharp & Dohme, Pfizer, and Tesaro. Dr. Bober holds stock in Apex Neuro. Dr. Quinn has received honoraria from FLO Health. Dr. Lindau receives research funding from the NIH. She is founder and Chief Innovation Officer of NowPow, LLC, and President of MAPSCorps, 501c3. She and her spouse hold investments in other health-care–related companies also unrelated to this article and stocks and mutual funds managed by third parties.
REFERENCES
1. Griggs J, Maingi S, Blinder V, et al: American Society of Clinical Oncology Position Statement: Strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol 35:2203-2208, 2017.
2. Quinn GP, Alpert AB, Sutter M, et al: What oncologists should know about treating sexual and gender minority patients with cancer. JCO Oncol Pract 16:309-316, 2020.
3. Lindau ST, Schumm LP, Lauman EO, et al: A study of sexuality and health among older adults in the United States. N Engl J Med 357:762-774, 2007.
