“There is huge potential to positively influence a patient’s experience and outcomes” by addressing concerns about sexual function after cancer treatment early in the course of treatment planning, Stacy Tessler Lindau, MD, MA, stated in her keynote address at the 11th Annual Oncofertility Consortium Conference in Chicago.1 A practicing gynecologist, Dr. Lindau provides care specifically to women with cancer and sexual function difficulties. She is also Professor of Obstetrics/Gynecology and Medicine-Geriatrics as well as Director of the Program in Integrative Sexual Medicine at the University of Chicago and was Founding Chair of the Scientific Network on Female Sexual Health and Cancer (www.cancersexnetwork.org).
Two of every three women who survive cancer have a cancer type that directly affects the sexual organs.— Stacy Tessler Lindau, MD, MA
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“Two of every three women who survive cancer have a cancer type that directly affects the sexual organs,” Dr. Lindau reported. Breast, cervical, uterine, and colorectal cancers are treated with surgical procedures that include mastectomy, vulvectomy, hysterectomy, and ostomy. “How do we do these procedures without talking to women about the potential effects on sexual function?”
Treatment of cancer “is shown to cause or exacerbate prior loss of sexual function in somewhere between 37% and 75% of women,” Dr. Lindau said. Even the lower estimate of 37%, is “at least an order of magnitude of greater risk” than would be tolerated for other complications, such as postoperative infection or bladder injury, she added.
Mostly New Problems
“Many women who come to care with sexual function concerns—and they are the brave women who figured out a way to ask for help—think the problem is in their head,” Dr. Lindau said. “While sexual functioning does involve the mind—and certainly once a person develops a problem, it can cause angst and worry, even depression and grief—most of the women I see have at least some physical explanation for their sexual difficulties.”
If a patient reports she is unable to have an orgasm, “the first question will be, was this also a problem before cancer treatment or a new problem? Most of the time, it is a new problem. It is rare to see primary anorgasmia,” Dr. Lindau said.
“Some women feel deficient if they are not having an orgasm with vaginal intercourse alone, although only about one-third of women will routinely have orgasm with vaginal intercourse alone, without there being some direct contact with the clitoris or the mons pubis,” Dr. Lindau noted. “But most of these women can have an orgasm by masturbating. If we are not specific in how we talk with patients, we might misunderstand the problem.”
She also noted, “some treatments we use for cancer and the inflammatory aspects of cancer itself, even if it is not directly in the brain, might affect the brain and, therefore, sexual function. So, when patients fear it is ‘in their head,’ it may be explainable by biologic or iatrogenic reasons.”
Patient-Centered Science
Dr. Lindau pointed out the role of oxytocin in orgasm. “One way that oxytocin release is stimulated is through nipple stimulation during sexual intercourse. So, if a woman has her breast or the nipple-areolar complex removed, she loses that physiology. When a woman says, ‘I no longer have my breasts and therefore am unable to have an orgasm,’ we have to understand that complaint is not hysterical. It is a science-based and evidence-based concern.” Advancements in breast reconstruction have greatly improved form and appearance but have not extended to the restoration of breast function, Dr. Lindau noted. “This is one of the areas of work in our lab,” she added.
In an interview with The ASCO Post, Dr. Lindau commented on the “growing movement of women choosing to ‘go flat,’” opting out of reconstruction (a trend noted in 2016 in The New York Times2 and The ASCO Post3). “Many women who are making that choice think they will have better breast area sensation and function than if they reconstruct their breasts. As many as 100,000 women have one or both breasts removed each year just in the United States. Patient-centered science is needed to help inform women’s decision-making about mastectomy.”
Systematic Screening Recommended
Since many patients with cancer are reluctant to report sexual difficulties, “I recommend—and so do most of the cancer-related organizations that have commented on this issue—there be a way to systematically address sexual function,” Dr. Lindau said. “Many of us have patients complete checklists before they come in. There is no reason why problems or concerns with sexual function can’t be queried under the genitourinary part of the review-of-systems checklist,” she added.
“Profiling is inappropriate, and it is ineffective. It is discriminatory and a waste of time,” she stressed. “We cannot look at a woman and know whether she values her sexual function. We cannot tell that by her outward appearance or her age, by her health status, by her cancer stage, by her marital status. I advocate a universal approach, because the evidence says most women of all ages value their sexuality,” Dr. Lindau told The ASCO Post.
With several coauthors, Dr. Lindau published “an exceedingly detailed description” of the procedure for physical examination of female cancer patients with sexual function concerns.4 She advised conference participants (primarily physicians and nurses) whose centers don’t have specialized care for these patients to share the article with an interested colleague. “Contact one of the authors or engage with the Scientific Network on Female Sexual Health and Cancer—we can help you get started.” Dr. Lindau added, “we also have published a manifesto that you can use to plead your case—it’s an argument based on the best available evidence that explains why we cannot continue to have a world where women are treated for cancer without attention to this issue.”5
Common Presentation
A common presentation, according to Dr. Lindau, is that of a woman who has had surgery and been told to wait 6 weeks for the wounds to heal before resuming sexual relations. “She hasn’t started chemotherapy, radiation, or adjunctive therapy, and she is a little fearful, but having gone through the cancer diagnosis and treatment, she wants to reconnect. She may have arousal, maybe a little less than before, perhaps tempered by some fear. She and her partner attempt intercourse, and she experiences some discomfort—dryness or tightness. It may even be that little bit of discomfort that she had experienced before, but now it means something different. Then the fear ramps up. The next time she tries, she is more fearful, and this impedes her desire. It is even harder to become aroused and without arousal, the vagina lacks the usual moisture, the normal blood flow. She attempts again. There is more pain, more fear, and then the cycle continues. Ultimately, it’s no wonder she loses interest in sex,” Dr. Lindau said. “Even the loss of interest is distressing for women.”
“Some people become aversive to sex, repulsed by it even,” she continued. “A woman with this feeling will work hard to avoid a situation where the partner thinks she might want to have sex. She feels fearful, she is grieving, and this is the injustice—when you don’t talk about it, women feel like it is their fault. They think they are the only one, and it can’t be corrected. Marriages and relationships can dissolve because of these problems, especially for the people who don’t get help. And partners suffer, too.”
The Bulbocavernosus Muscle
Dr. Lindau stressed the importance of the bulbocavernosus muscle in understanding women’s sexual function. This sphincter-like muscle is normally in a slightly contracted state, but “when a woman is sexually aroused and desires penetration, this muscle relaxes,” she noted. When a woman feels fearful, or she has had pain, especially when there has been pain or trauma to this body part, the muscle gets tighter.”
Despite the high prevalence of the problem and the fact that we are not doing a great job talking about it, loss of sexual function after cancer commonly has a correctable physical component, and even people who had sexual difficulties before cancer can still recover their sexual function….— Stacy Tessler Lindau, MD, MA
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Concurrent with this cycle of the bulbocavernosus muscle getting tighter and tighter, a woman may be experiencing dryness in the vagina due to treatments or medicines like aromatase inhibitors, which deplete her estrogen, Dr. Lindau said. While breast cancer patients are the most likely to use aromatase inhibitors, “we are now starting to see aromatase inhibitors used for other estrogen-dependent cancers or are using them to prevent cancers. Use of these hormone-blocking drugs is increasing.”
Without estrogen, the vagina becomes less flexible, and there is less of a buffer against friction. “Bleeding can easily occur. So now you have a muscle pulling tighter and tighter, and penetration feels impossible,” Dr. Lindau stated. Women can be advised to “bear down a little” on the muscle, she said. “For women who have given vaginal birth, this is an understandable concept, but all women know how to bear down for a bowel movement, and that concept works, too.”
Women with vaginismus and other impediments to penetration may be helped by using a series of gradually larger dilators. Dilator therapy regimens “are largely based on expert experience, but can be extremely therapeutic, especially when used with guidance from a professional who understands the problem,” Dr. Lindau said. “Pelvic floor physical therapists are also extremely helpful for this problem.”
Dryness and Atrophy
A woman treated for cancer “can experience atrophy and thinning of the vagina and external genital structures due to loss of estrogen. “The nerves and the blood vessels are close to the vaginal surface because it can get very thin. This is why some women have bleeding with intercourse. And if they no longer have a uterus to bleed, they might worry their cancer has come back, and their partners do, too.”
Physicians, however, should not “just assume atrophy if a woman is having dryness and pain. A woman who has had a bone marrow transplant may have graft-vs-host disease affecting the vulva,” Dr. Lindau said. “We can’t treat women for dryness with estrogen if we haven’t looked down there and assured ourselves there is not another explanation for the problem.”
Another reason for dryness is “way too much hygiene in the genitals,” Dr. Lindau said. “Too many women are using soap in their vagina, between their labia, and on the vulva. They are using pads day and night. Pads are meant to dry, and that is what happens to the genital tissues with the pads. Women are using wipes that have all kinds of irritants and, without any estrogen around, can really inflame the mucosal structures.” Soaking in tubs that have not been thoroughly rinsed of household cleaning products can also be caustic, she added.
Self-Care for Dryness
“There is self-care for dryness that does not involve prescription treatment. There are moisturizers, and there are lubricants. Moisturizers are for maintenance,” Dr. Lindau said. “Lubricants are for love-making.”
“Moisturizers have to be used every 2 to 3 days, really as long as the woman wants protection against dryness. They can be applied internally and externally and usually come with an applicator,” Dr. Lindau said.
“Lubricants are meant to reduce friction, but water-based lubricants may actually increase friction. They evaporate quickly because they are water-based and rapidly get sticky. Most of my patients like the au naturel route, and many choose coconut oil, which goes from a solid to a liquid quickly and warms easily.”
There are a broad range of options for estrogen preparations. Dr. Lindau said that most professionals she works with “are recommending either a vaginal cream or a tablet. The nice thing about the cream is that it can also be used on external genital structures.”
Dehydroepiandrosterone (DHEA), also known as prasterone, is converted to estrogen, Dr. Lindau noted, and, like the other estrogen-containing products, “has a contraindication against use with an estrogen-dependent cancer. It is good that we have a U.S. Food and Drug Administration–approved form of DHEA (Intrarosa), because people were using over-the-counter preparations, and we have limited oversight of those products,” she remarked.
Why Not Talk About It?
Several studies in different subpopulations have found that “women are less likely than men to have a doctor talk to them about sex,” Dr. Lindau said, although some studies have shown that female doctors are more likely to talk about sex with their patients.
In taking the Hippocratic oath, physicians pledge to avoid ever having sexual relations with a patient. “Obviously there is a very important ethos in medicine to maintain appropriate boundaries with patients. [But] when it comes to talking to patients about sexual function outcomes, physicians may err too far on the side of caution [and avoid even any discussion about sex]. They may wind up depriving women of information about sex after cancer that the major cancer organizations recommend we counsel them about,” Dr. Lindau told The ASCO Post.
She concluded, “The hopeful message is, despite the high prevalence of the problem and the fact that we are not doing a great job talking about it, loss of sexual function after cancer commonly has a correctable physical component, and even people who had sexual difficulties before cancer can still recover their sexual function and maybe do better after cancer treatment.” She noted that some patients do report improved sexual relationships after being treated for cancer, often because they and their partners have more frank discussions about sex.
“Spreading truths about sex,” including preserving and recovering sexual function after cancer, is the mission of WomanLab (www.womanlab.org). “We need to support self-care for all women in the context of cancer, including for sexual function,” Dr. Lindau said. “We are creating a knowledge dissemination platform so anyone with an Internet connection could gain access to the specialized knowledge we have.” ■
DISCLOSURE: Dr. Lindau reported no conflicts of interest.
REFERENCES
2. Rabin RC: ‘Going flat’ after breast cancer. The New York Times, October 31, 2016.
4. Lindau ST, Abramsohn EM, Baron SR, et al: Physical examination of the female cancer patient with sexual concerns: What oncologists and patients should expect from consultation with a specialist. CA Cancer J Clin 66:241-263, 2016.
5. Lindau ST, Abramsohn EM, Matthews AC: A manifesto on the preservation of sexual function in women and girls with cancer. Am J Obstet Gynecol 213:166-174, 2015.
