Sexual health of cancer survivors a complex, often undiscussed topic
The topic of sexual health among cancer survivors, when addressed at all, tends to focus on concrete, treatable issues, such as fertility and erectile dysfunction.
However, cancer survivors also face several other, less straightforward obstacles to intimacy and sexual well-being.
“Most of what clinicians learn related to sexuality is based on a disease model, but there are many other aspects of sexuality related to quality of life, sexual pleasure and intimacy,” Sharon L. Bober, PhD, senior psychologist in the department of psycho-oncology and palliative care, director of the sexual health program, and assistant professor in the department of psychiatry at Harvard Medical School, said in an interview with Healio. “Sexual health is at the exact intersection of physical, psychological, relationship and cultural factors. There is often complexity to this equation. We can’t always just give someone a little blue pill and expect that to be enough.”
Survivors of all cancers affected
Issues with sexual function are common among cancer survivors, research has shown. According to a report by Higano and colleagues published in JCO Oncology Practice, a survey of cancer survivors conducted from 2006 to 2007 showed 46% of respondents reported sexual health problems related to the diagnosis and treatment of cancer, and 71% noted that they had received no care for sexual health issues.
Various studies have pointed to the effects of radiation, chemotherapy, surgery and hormone treatments on cancer survivors, particularly those who have survived gynecologic and urologic cancers. Additionally, survivors who have undergone treatment directed to the pelvic area may have ongoing problems with vaginal narrowing, fibrosis, bowel and bladder issues, and lack of blood flow.
Other cancers and their treatments can just as easily disrupt or undermine sexual health, according to Patricia A. Ganz, MD, distinguished professor of health policy and management at UCLA Fielding School of Public Health, professor of medicine at David Geffen School of Medicine at UCLA and director of the Center for Cancer Prevention & Control Research at Jonsson Comprehensive Cancer Center.
“Any cancer diagnosis, with the psychological threat of death, harm and vulnerability, may influence libido, how a person feels about themself and the sense of intimacy,” Ganz said. “A survivor might feel self-conscious about a scar or an amputation or other physical changes. Head and neck cancer affects speech, swallowing and saliva. It can make a person feel unattractive.”
Cancer treatments also frequently lead to fatigue, nausea or other adverse effects that are not conducive to sexual well-being.
“There could be a change in the thresholds of energy or it could just be discomfort globally,” Don S. Dizon, MD, FACP, FASCO, director of the breast and pelvic malignancies program at Lifespan Cancer Institute and head of community outreach and engagement at the Cancer Center at Brown University, said in an interview with Healio. “Even some chemotherapeutic drugs can affect the pelvis. If you’re constantly worried that the EGFR inhibitor you’re taking is giving you diarrhea, are you really going to want to expose yourself to a sexual encounter?”
Extra challenges for adolescents, young adults
Sexual health issues in the wake of cancer treatment can affect survivors of all ages, partner statuses, gender identities and sexual orientations. Although cancer tends to disproportionately affect older people, young cancer survivors often find themselves grappling with sexual health issues while just beginning to navigate the world of dating and sexuality.
“We tend to make assumptions that these cancer survivors are in a partnered relationship, and that isn’t necessarily the case for adolescents and young adults,” Gwendolyn P. Quinn, PhD, professor in the departments of obstetrics and gynecology and population health at NYU Grossman School of Medicine, said in an interview with Healio. “Some of them have never been in a romantic or sexual relationship.”
To understand the extent to which adolescent and young adult (AYA) cancer survivors experience sexual dysfunction, Quinn, Bober and colleagues conducted a systematic review of published literature on this topic. Results showed AYA cancer survivors live with a significant burden of sexual dysfunction, body image issues and dating/relationship challenges. Moreover, the researchers found no interventions designed specifically for the AYA population.
“The interventions we found were primarily organ site-specific and didn’t address the issues that might be unique to AYA survivors,” Quinn said. “Also, very few of the studies we evaluated used the same tool to measure sexual dysfunction and sexual health in this population.”
She said, historically, discussions about sexual health in AYA cancer survivors have centered on fertility preservation. As this topic is now being addressed much more openly, there is a need to consider the many other aspects of these survivors’ sexual health, according to Quinn.
“Fortunately, we have seen great changes in discussing fertility with AYA patients with cancer and survivors over the past 10 years; it’s become standard of care,” she said. “It’s taken a long time for those of us in this field to get clinicians to be able to talk about fertility preservation with a 12-year-old. However, I think we got a little bit too focused on fertility. Now we’re running into the same issue in discussing sexual dysfunction.”
For young adults of reproductive age, the effects of cancer and its treatment can pose a major obstacle to finding a partner and feeling confident and comfortable with their sexuality, Quinn said.
“Say it’s a 21-year-old cancer survivor who maybe has scars, or their hair hasn’t grown back, and they aren’t feeling good about the way they look. They probably aren’t going to venture out to find romantic relationships and be sexual,” she said. “So, we can’t just focus on one thing like fertility; they all go together.”
Ganz said unlike a partnered cancer survivor, young cancer survivors who are single cannot count on the support and empathy that comes with a committed relationship.
“When you’re in a partnered relationship, that person goes through it with you. They understand what you’ve been through with losing your hair, nausea and vomiting, and poor energy levels,” she said. “They are often very patient about the recovery of sexual function and activity. However, I treat a lot of younger patients with cancer, and for these patients, it is difficult to meet someone new and try to explain the situation to them.”
‘At least you’re alive’
There are many reasons oncologists typically do not discuss sexual health with cancer survivors, according to Dizon. He noted that in medical school, the area of sexual health is a very small aspect of training.
“Most providers are loath to discuss something they don’t know what to do about, or worse, makes them uncomfortable,” he said. “For example, we are not trained to know what to do when a patient says, ‘I have no desire.’ I know many incredible surgeons in both breast and gynecologic oncology aren’t able to engage in these conversations because of it.”
Additionally, Dizon said, oncologists often lack time to discuss every relevant issue with a survivor during an appointment.
“In survivorship, there are so many competing priorities,” he said. “We want to make sure that people are exercising, that healthy lifestyles are adopted after cancer. So, it comes down to time. How much can you actually do within that 20-minute visit?”
Likewise, some cancer survivors may be reluctant to discuss sexual health for various reasons, Dizon said.
“Some survivors accept that this change has happened, particularly if sexual function wasn’t necessarily important to them in the first place,” he said. “For these patients, sexual function just isn’t that big of a deal and they would rather talk about their breathing issues or exercise.”
For Dizon, patients are the ones who decide if it’s something they want to address. “To create an issue if they don’t see it as an issue isn’t helpful,” he said.
For other survivors, sexual health and function may be important, but they may not feel comfortable broaching the conversation with their clinician because it is so private, Dizon said.
“We have enough data to show that patients aren’t going to spontaneously bring this up,” he said. “Part of it might be fear or embarrassment of how such concerns might be met. I think the worst thing in the world for a cancer survivor to hear is something like, ‘At least you’re alive.’”
More resources needed
Although sexual health problems may have simple solutions in some cases, addressing the barriers to conversations about these issues is rarely simple, according to Bober.
“There is the cultural piece; there’s the training piece. There are systems issues; for example, most clinic visits don’t allow for a lot of time to talk about many things,” she said. “When you look at what you can realistically get to in a 10- or15-minute visit, and there’s a topic that you know is going to be complicated, it often doesn’t make it to the top of the list.”
Physician training is an important component that has been lacking for some time, Bober said, and providers with interest in this area generally have had to seek additional training on their own. However, she said great improvements have been made in this area in recent years.
“Building on the work of several pioneers who championed this field for decades, there is now increasing interest from clinicians and researchers across the country who want to improve sexual health and quality of life for cancer survivors,” Bober said. “More attention has been given to this issue than ever before.”
Bober cited an organization with which she has been involved extensively: the Scientific Network for Female Sexual Health and Cancer. Initially founded by Stacy Lindau, MD, professor of obstetrics and gynecology at the University of Chicago, in collaboration with colleagues at Memorial Sloan Kettering Cancer Center, the organization is intended to bring together clinicians and researchers who have an interest in sexual health and who are working to expand the evidence base for treatment of sexual problems in women and girls with cancer.
“Because those of us doing this work were few and far apart, Dr. Lindau set out to create a network of clinicians and researchers to foster collaboration and help further this mission,” Bober said.
Dizon added that another organization for which he previously served as a board member, the Patty Brisben Foundation, has devoted much of its efforts to raising awareness of female sexual health, including for those with cancer.
Bober noted that, like some oncologists, community physicians who treat long-term cancer survivors also often lack the education needed to discuss sexual health with these patients.
“There is a critical shortage of resources,” she said. “For example, there need to be specialists to send patients to when they endorse a problem. There also has to be somebody on the team who is willing to initiate conversation about sexual health and who can offer some next steps. This does not have to be a physician, it could be a nurse, a social worker or a psychologist.”
Organizations like the scientific network also offer education to clinicians who want to learn more about addressing sexual health challenges, Bober said.
Dizon agreed that all cancer centers should have designated providers who can discuss sexual health issues with patients. Although he is not affiliated with the network, he alongside colleagues including Anne Katz, RN, PhD, and Michael Krychman, MD, have developed a Sexual Health First Responders Course, which has been a part of the annual program of the National Consortium of Breast Cancers. Dizon added that oncologists and other clinicians should feel comfortable referring patients to appropriate specialists.
“If I have a patient who has swelling in their legs associated with chest pain, I’m going to refer them to a cardiologist,” he said. “I think we need to normalize discussing and referring for sexual health issues in the same way.”
Bober said physicians can also find excellent support within the patient advocacy community. She noted the significant strides made by patient advocates over the years in demystifying health topics such as HIV and breast cancer.
“I think the patient advocacy community is incredibly skilled at knowing how to move the agenda forward,” she said. “I think working hand in hand with survivors and patient advocates to move the needle on this is absolutely critical.”
- Chevren B, et al. CA Cancer J Clin. 2020;doi: 10/3322caac.21655.
- Higano CS, et al. J Oncol Pract. 2016;doi:10.1200/JOP.2016.011536.
For more information:
Sharon L. Bober, PhD, can be reached at firstname.lastname@example.org.
Don S. Dizon, MD, FACP, FASCO, can be reached at email@example.com.
Patricia A. Ganz, MD, can be reached at firstname.lastname@example.org.
Gwendolyn P. Quinn, PhD, can be reached at email@example.com.