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? We physicians are so focused on treating or curing disease that we often lose sight of the woman who has the disease.
Katie’s case is much too common. Women are often reluctant to address their sexuality with us—especially when we have been dismissive. We must recognize this important aspect of quality of life and relationships and be prepared to raise the issue with our patients before they begin therapy.
Educating ourselves and then our patients about strategies to reduce the impact of treatment and menopause on sexual function is the first step. Acknowledging and validating their concerns and being able to offer practical steps to preserve healthy sexual function is something, I think, that all ObGyns should be able to do. Strategies to maintain vulvovaginal elasticity include avoidance of soaps and drying chemicals, daily perineal and vaginal stretching—either manually, with a dilator, or via frequent sexual intercourse. And topical lubricants and moisturizing agents should be recommended to maintain vaginal pH and reduce the dryness, itching, and overall dysesthesia.
As the studies highlighted in this Update on Sexual Dysfunction demonstrate, the sexual consequences of radical hysterectomy are significant. Julie also became menopausal as a result of treatment—yet no one prepared her for the symptoms she would experience, and no member of her treatment team helped her understand the likely impact of therapy. Radiation oncologists do address the need for vaginal dilators or daily intercourse to maintain depth and caliber of the vagina during and after therapy, but they are less likely to prepare a patient for menopausal symptoms.
If our patients are to have an optimal experience, we need to provide coordinated, cross-disciplinary care that includes management not only of immediate side effects of treatment but also psychosocial and long-term hormonal and sexual sequelae of therapy. Julie charted her own course with the help of a very dedicated and sensitive partner to successfully overcome the negative effects of radiation, chemotherapy, surgery, and menopause on her sexuality.