Jennifer R. Klemp, PhD, MPH, MA
Low sexual desire is a common problem among women diagnosed with breast cancer, ranking as one of the top three causes of post cancer distress, according to recent surveys. Clinicians looking for ways to help patients improve the quality of this aspect of their lives after cancer should not expect a pill to relieve symptoms for most women, according to Leslie R. Schover, PhD, who presented on this and other topics related to sexual health at the 31st Miami Breast Cancer Conference
held March 6-9, 2014.
Instead, Schover advises practitioners to identify the root causes of the problem and address each issue with a specific treatment plan, because loss of sexual desire is the most complex and difficult sexual problem to treat (Box
). Schover, a clinical psychologist with a special interest in sexual problems and infertility-related distress after cancer, is a professor in the Department of Behavioral Science at the University of Texas MD Anderson Cancer Center in Houston. She noted that more than 50% of menopausal women without breast cancer report problems with vaginal dryness, 59% enjoy sex less, and 55% avoid sex.
Sexual dysfunction in postmenopausal breast cancer survivors is at least as severe, and studies show this is exacerbated by use of aromatase inhibitors (AIs). According to a recent survey of women who had taken AIs for 18 to 24 months, Schover reported that 24% of previously sexually active women had stopped having sex due to pain.
Causes of Low Sexual Desire in Women With Breast Cancer
Ovarian failure after chemotherapy/ oophorectomy
Use of aromatase inhibitors
Weight gain following chemotherapy
Increase in menopausal symptoms
Depression and life stress
Distress over body image
Medications (eg, for pain, depression, anxiety)
Schover also dispelled one common misconception that sexual desire after breast cancer (or in menopausal women) is correlated with serumfree or total testosterone, adding that given the lack of data on efficacy and their role in recurrence risk, she does not believe that androgens should be prescribed to women who have had breast cancer.
What, then, are some of the options for survivors? Schover said that conservative approaches can work for many women and include vaginal moisturizers, lubricants, and pelvic floor muscle awareness. Among women for whom body image is a factor, strategies may include helping them to become more accepting of changes in their bodies, minimizing negative distracting thoughts during sex, and promoting a healthy diet and exercise both during and after breast cancer treatment.
Other techniques Schover suggested to increase desire are physical sports or dance, intimate talks, cuddling, romance, massage, and simply improving sexual communication overall. In the end, however, she said, no single “magic bullet” exists.
“I’m very sympathetic to the pressures on the whole oncology team these days to see more patients in less time. There are so many issues that they have to deal with, and I think that even asking one question can make a difference,” said Schover, for example, having resources available and simply mentioning to the patient that many women with breast cancer report problems with their sex life: “‘Is that true for you? If so, would you like some help with that?’ It doesn’t have to take a lot of time in the clinic.”
Meeting Unmet Needs
When surveyed, oncology nurses have indicated a desire for more education and resources to help patients with cancer to manage any sexual side effects, noted Jennifer R. Klemp, PhD, MPH, MA. Klemp, an assistant professor of Medicine in the Division of Clinical Oncology at the University of Kansas Cancer Center, is also the founder and CEO of Cancer Survivorship Training, Inc.
“It doesn’t make a difference if patients are early stage or later stage, this is an issue that is important to them across the spectrum, and it is not for us to pass judgment as to what is important to them,” Klemp stressed.
She noted that research which she and colleagues conducted scheduled for publication in June, found that even among patients with metastatic breast cancer, sexual health–related issues were their second most common concern. Only their life role—a feeling that they were not contributing enough to their household financially or with day-to-day tasks—came before these issues of sexual health, body image, and intimacy.
While realistic about their disease, she said, these women “felt that they were no longer attractive to their partner, they were no longer attractive to themselves, they didn’t know themselves, they had so many things that weren’t working like they used to work, that they were shying away from any type of intimate relationship.”
Nevertheless, she said, clinicians will rarely, if ever, ask a metastatic patient about sexual health issues.
She highlighted an example of a 32-year-old patient with metastatic breast cancer, who though understanding that her disease was not curable, was deeply troubled by the destructive effect that her diagnosis was having on her relationship with her husband. “There are hundreds of examples that I could give you like that,” said Klemp.
On the other end of the spectrum is the longterm breast cancer survivor. Klemp noted that at her facility’s survivorship clinic, they found that 46% of patients (median age = 57 years) reported not being sexually active.
“That raised a red flag for us,” she continued. Her team thought, “Wow, we have to fix it,” she said, but for some of these women, it’s not a priority, noting that clinicians need to be mindful of not imposing their priorities on the patient. “We have to assess it,” but then follow with asking the patient where sexual issues fit on her list of priorities.
Another important consideration is that often when oncologists ask the question, patients are more reluctant to respond, Klemp said, because they may not want to “bother” the treating physician, or “waste their time.”
A. Nicole Spray, APRN
“Nurses and nurse practitioners need to own survivorship, because they have the skill set—in education, coordination, and intervention.” “They are trained to do what survivorship entails.”
The Nurses’ Role
Nicole Spray, APRN, a nurse practitioner at the HaysMed Breast Care Center in Kansas, concurs that sexual concerns are common among the patients and survivors she sees at her clinic, but they may go unreported, because patients are embarrassed to talk about them.
“Most women will not bring this up,” she explained. “I have had very few women who will actually say to me, ‘I am having this problem with vaginal dryness, and I need help.’”
Spray finds that simply adding a question about vaginal dryness/painful intercourse or decreased libido (the two issues she hears about most often from patients in this area) to her overall review of symptoms is a great way to open the door. She generally doesn’t ask about sexual health–related concerns first, giving patients a chance to become more comfortable with her as they discuss other symptoms, but it is her standard practice to ask every patient she sees about them.
Women will give different responses when she asks, and the priority they place on sexual activity varies; for many, it is a relief to be able to discuss these issues, and for some, it will be the first time the question has been raised. Spray estimates that nearly half of her patients will mention a sexual health–related concern during symptom review.
Spray said that although most of her patient education occurs with individuals, she encourages women to take the responsibility for educating their spouses or partners about what is happening with their bodies and the emotions that come with menopause—whether it is natural or induced by surgery or chemotherapy. Other medications the woman may be taking also can play a role, such as antidepressants which can impact libido.
“I provide women with information about what may be causing their symptoms on a more medical level, so that they can explain it to their partners,” she said. She added that she finds that when partners have these discussions, it helps them to understand and work on any issues together.
“Low desire is the tough one to address,” Spray continued, which is why the education process is so important, as it can serve as a way to start talking about how they define intimacy as a couple. She added that sometimes the issues are with the spouse. The women, she said, “can use me as an excuse to open up the conversation: ‘My provider was talking with me today about this . . .’”
At her clinic, Spray said that they maintain a comprehensive list of vaginal lubricants that is updated regularly when new products come on the market. She has also referred a few women to local mental health counseling professionals. Another program that has been very successful, Spray noted, is a breast cancer survivor retreat which her facility has hosted annually for the past 2 years, with support from a Susan G. Komen grant. Among the sessions offered at the half-day retreat, is one focused on sexual health, facilitated by a psychologist.
“By and large, that is our most well attended session,” said Spray. “You never know, because you might think people would be embarrassed or shy. They weren’t, and the women have gotten so much benefit from that,” she added, noting that women are also relieved to see that they are not the only ones having these symptoms.
Spray said that most of the speakers at the retreat donate their time, but if clinics would like to offer something smaller for their patients, hosting an evening gathering with coffee and conversation would be a very low budget way of reaching out.
Once the issue is on the table, these experts agree, there are many resources to help, but starting the conversation is essential. As Spray noted, “I say to my patients all of the time: if I don’t know about it, I can’t help you with it.”