UPDATE ON SEXUAL DYSFUNCTION
Among women affected by cancer, the further affliction of sexual dysfunction is widespread
IN THIS ARTICLE
- Cancer survivors have many complaints not addressed by their physicians
Janelle Yates, Senior Editor (Web Exclusive, July 2011)
- How to talk to patients about sex
Barbara S. Levy, MD (Web Audio, September 2010)
- Sexual dysfunction: What can you do for your patients?
Barbara S. Levy, MD (Update, September 2010)
Sexual dysfunction is common among women in the United States. One recent study put the prevalence of distressing sexual dysfunction at 22.2%.1 When cancer enters the picture, that percentage rises—dramatically. A 2010 survey from the Lance Armstrong Foundation found that 46% of people affected by cancer report problems with sex after treatment.2
In this article, I highlight three recent studies that explore the sexual effects of cancer and its treatment:
- a prospective cohort study showing that a majority of women treated for breast cancer experience sexual dysfunction afterward
- two longitudinal studies of women affected by gynecologic cancer, which show significant disruption of sexual function in the short and long term.
I also present the experiences of two cancer survivors who volunteered to relate their stories so that you might develop a better understanding of some of the challenges they face about their sexual function.
Sexual function deteriorates in many women after they are treated for breast Ca
Panjari M, Bell RJ, Davis SR. Sexual function after breast cancer. J Sex Med. 2011;8(1):294–302.
According to this prospective cohort study from Australia, a majority of women report significant sexual dysfunction after treatment for breast cancer—even when their sexual function was good, and satisfying, at the time of diagnosis (TABLE).
The Health and Wellbeing after Breast Cancer Study enrolled 1,684 Australian women within 12 months of their first diagnosis of invasive breast cancer. Each woman completed a questionnaire at the time of enrollment, and will complete annual follow-up questionnaires for 5 years to assess the impact of invasive breast cancer on physical, psychological, and socioeconomic wellbeing. Embedded within the 12-month questionnaire was the validated Menopause-Specific Quality of Life Questionnaire (MENQOL), which was used in this study to explore the sexual consequences of the diagnosis and treatment of invasive breast cancer.
Of the initial cohort, 1,011 women completed the 12-month questionnaire. These were women younger than 70 years who had a sexual partner and no evidence of active breast cancer. The authors describe the women in this cohort as representative of all women in Victoria, Australia, who have a new diagnosis of invasive breast cancer, in regard to both age (mean, 59 ± 11 years) and the stage of tumor (stage I, 48%; stage II–IV, 52%) at diagnosis.
Of this group, 70% were treated with lumpectomy and radiation therapy, and 30% were treated with mastectomy (2.6% with bilateral mastectomy). Of the women who underwent mastectomy, 9.6% had reconstructive surgery during the first year after diagnosis.
Forty-nine percent of women were treated with tamoxifen, and 28.2% were treated with an aromatase inhibitor.
After breast Ca, women experience low desire and less frequent sexual activity – as well as distress over both outcomes
Decreased sexual activity
Distressed by sexual function
Seeking increase in desire
Source: Panjari et al.
More than two thirds of women reported sexual dysfunction 12 months after treatment
At baseline, 83% of women described their prediagnosis sexual function as good and satisfying. Twelve months later, 70% reported significant sexual dysfunction, and 77% reported vasomotor symptoms.
Women who reported new-onset sexual dysfunction were more likely to:
- have become menopausal since diagnosis
- experience hot flashes or night sweats
- be treated with an aromatase inhibitor.
There was no association between sexual dysfunction and stage of disease at diagnosis; type of surgery (lumpectomy or mastectomy); breast reconstruction; lymphedema; or axillary dissection.
Vasomotor symptoms in women taking endocrine therapy were associated with sexual dysfunction
Further analysis demonstrated that, among women who experienced vasomotor symptoms, those taking an aromatase inhibitor were more than three times as likely to report sexual dysfunction (odds ratio [OR], 3.49; 95% confidence interval [CI], 1.72–7.09), compared with women who were not on endocrine therapy—and those taking tamoxifen were almost twice as likely to report sexual dysfunction (OR, 1.73; 95% CI, 1.04–2.89). Chemotherapy was not independently related to sexual dysfunction.
In summary: 70% of women who were free of breast cancer 1 year after enrollment reported bothersome sexual consequences of their disease and its treatment; 77% reported vasomotor symptoms. Women who were rendered menopausal and those who experienced vasomotor symptoms while taking an aromatase inhibitor were at high risk of sexual dysfunction.
WHAT THIS EVIDENCE MEANS FOR PRACTICE
Be aware of the side effects of breast cancer and its treatment, and not only prepare your patients for the likely consequences but also make yourself knowledgeable about strategies to ameliorate their vaginal dryness and to improve elasticity and arousal for them.
Proactive stretching, use of vaginal dilators and topical oils, and, most important, psychological strategies to help your patients and their partners adjust to the inevitable physical changes will go a long way toward improving their sexual experiences.
Two survivors report frustration—and resignation—when they sought help for sexual complaints
Katie* and Julie* tell typical stories of deep dissatisfaction with the health system after their cancer treatment
Katie: “I wasn’t prepared”
When my doctor told me I had locally advanced breast cancer 3 years ago, when I was 50, I wasn’t that surprised by the cancer diagnosis (I have a strong family history of breast cancer)—only by the fact that the tumor had developed so fast since my previous mammogram 15 months earlier. As treatment, I underwent neoadjuvant chemotherapy and bilateral mastectomy (I had the unaffected breast removed as a preventive measure). I also had breast reconstruction and started taking an aromatase inhibitor.
At the time of my diagnosis, I lost all desire for sexual intimacy—no big surprise there. But even after my treatment was over, my desire did not return. Part of the problem was the fact that chemotherapy rendered me menopausal, and the aromatase inhibitor I was taking compounded the menopausal experience. Quite suddenly, I was experiencing hot flashes, vaginal dryness and itching, pain during intercourse, severe bone and joint aches, weight gain (particularly around my abdomen), and general lethargy.
No one in my family had ever mentioned these effects of cancer. And none of my doctors prepared me, either. In fact, when I raised the subject, they seemed genuinely surprised! They offered no remedy other than a recommendation to apply a “moisturizer”—but they gave no details about what kind or how to use it. My oncologist did say that local estrogen would help relieve the pain of intercourse—but then she recommended strongly against it because my cancer was hormone-receptor positive.
My plastic surgeon did a much better job of explaining the effects and outcome of reconstruction than any of my other physicians, including my ObGyn, did of preparing me for menopause and sexual dysfunction.
All of my physicians strike me as caring, sensitive people, but their underlying attitude, as I perceive it, is that I should be grateful to be alive. In their view, it seems, enjoyment of sex is icing on the cake and, quite frankly, I am plenty lucky to have the cake. My oncologist even told me to let her know if I started “feeling better and having fewer hot flashes” so that she could perform ovarian ablation (and start the whole cycle over again). I was struck by how matter of factly she gave this advice, as though quality of life counts for nothing.
Three years into my postcancer life, I can say I have “adjusted” to my problems rather than overcome them. I am still taking an aromatase inhibitor. Sex is still slightly painful; I still struggle with vaginal dryness; and I sometimes feel like an old woman because of my bone and joint stiffness and pain. I did find out about an over-the-counter vaginal suppository, made with vitamin E and coconut oils, from another breast cancer survivor. And I switched from one aromatase inhibitor to another in an attempt to alleviate my achy joints. It helped.
I am grateful for my life—very much so—and for the expertise of my physicians, who helped to save it. But I wish they had prepared me better for the aftermath of cancer treatment. And I wish there were more remedies for women like me, who cannot take hormones.
Julie: “I’m on my own”
It was more than a surprise when my new doctor told me I had cancer. Until then, I had avoided doctors. That attitude can mean a premature death sentence when it comes to cervical cancer. It was a pretty awful realization that I could have avoided the drastic measures it took to save my life if I had just gotten annual Pap smears and exams. I was 39 at the time of diagnosis.
But after all the surgery and chemo and radiation were finished, the message I received was essentially: “OK, you’re good, for now. Just come back every few months for a check-up.”
What about the aftermath of all that treatment? What about the other aspects of the experience? I found that my doctors had very little to offer outside of surgery and drugs and the quick advice to get counseling or some other support services.
“I’m on my own” is what I’ve been telling concerned folks who ask how I’m doing. I am truly grateful for the skill, medicine, and machinery that made the killing of an invasive tumor possible. But I’m on my own when it comes to finding or inventing ways to cope with the new challenges of a pelvic area damaged by radiation and detoxing from the heavy metal—platinum—that was an ingredient in the chemo I received.
My partner and I have had to be persistently creative, careful, delicate, uncritical, and extremely patient with each other to bring about the return of a “normal” sex life. We have been successful, for the most part, but there is also a slightly new definition of what “normal” is for us. Our latest triumph is that we no longer have to use copious amounts of lubricant to engage in intercourse. Sex is no longer painful, as the vaginal tissues have been slowly, patiently engaged on a regularly scheduled basis. Can you imagine sex on a schedule? Neither could I, but that is what we found worked from as early as 1 week postradiation. As it turns out, this was good advice—really, the only advice I got when it came to the practicalities of restoring function, but it required a fair amount of tweaking and personalization as well.
Another big change in perception that I had to accept as part of my new norm is learning to talk about my most personal areas in a matter of fact way.
The cancer conveyor-belt approach to treatment is a very streamlined, well-run system. I’ve been impressed with the expertise, efficiency, and demeanor of all the professionals I have encountered. Everyone—even receptionists—has been helpful and empathetic, especially my own ObGyn, who has hugged me and cried with me and offered to put herself on the line for me and speak out to the media when I had no health insurance. But for most patients post-treatment, we figuratively walk off a cliff and find ourselves in new territory without any network or structure like we experienced during the “war” on our cancer. This new territory is a place of possibility within the health-care field—one I hope is developing now.
Dr. Barbara S. Levy asks: How do we respond?