A quick scan of the American Cancer Society’s resources on the fertility and sexual side effects of cancer reveals something interesting: On just about every page of the organization’s site, a version of the same phrase is included—and bolded: “Don't assume your doctor or nurse will ask you about these and other concerns about sexuality. You might have to start the conversation.”
Cancer and its various treatments impact sexuality in profound ways. Treatment for gynecologic cancers, for example, can remove key reproductive organs or send women into early menopause, taking away their ability to have children; physical and hormonal changes can contribute to body image issues, depression, and anxiety. In both men and women, intimacy and fertility can be affected by surgery, chemotherapy, and radiation as well. These things are known. They are studied.
But in 2007, when Elena Ratner, MD, was a gynecological oncology resident at Yale School of Medicine, she noticed something: Throughout treatment—and even after cancer was cured—many of her patients struggled with issues of intimacy, sexuality, and early menopause but rarely spoke about them. “These issues weren’t just common, they were debilitating,” says Dr. Ratner.
Back then, traditional cancer treatment was only about curing cancer; it didn’t offer solutions for issues of intimacy. Female cancer patients at Yale who entered early menopause might have been directed to Mary Jane Minkin, MD, a longtime Yale School of Medicine professor and menopause expert whom Dr. Ratner shadowed in her residency. If they didn’t see her, they’d often go without help, adds Dr. Ratner.
“I saw this void in cancer care,” she says. “So much of what we do affects sexual health, intimacy, and quality of life in a paramount way, yet we had absolutely nothing in terms of treatment that acknowledged this.”
So, after graduating, for a half-day each month, Dr. Ratner joined Dr. Minkin in seeing patients with gynecologic cancers for sexuality, intimacy, and menopause issues: painful sex, premature menopause, worries around intimacy. As word spread, that half-day grew into a full day. Then, after about a year, the doctors expanded their efforts to treat sexual dysfunction in all patients with all kinds of cancers.
They called their work the SIMS Program (Sexual, Intimacy & Menopause Program for Cancer Survivors). It was the beginning of what would be one of the first programs like it in the United States: a holistic treatment program that blended psychological and medical care for sexual dysfunction after cancer. Today, Dr. Ratner is the division director of Gynecologic Oncology at Smilow Cancer Hospital, and Dr. Minkin, who has taught at Yale for 41 years, is co-director of the program.
But it’s not just women who need help navigating these complex issues. Yale Medicine Urology addresses these issues in men, too. Treatments for prostate, bladder, and testicular cancers, such as surgery, chemotherapy, and radiation, can significantly impact a man’s intimacy and limit fertility. “Fortunately,” says Stanton Honig, MD, a professor of clinical urology at Yale School of Medicine, “we have excellent treatments available to restore intimacy for couples and to preserve fertility.”
In the 15 years since its inception, Yale has treated thousands of cancer patients suffering from the often silent yet impactful symptoms of sexual dysfunction.
How does cancer impact sexuality?
Both cancer itself and its treatments impact sexuality in monumental ways. Research suggests that more than 60% of women with cancer and 40% of men experience sexual dysfunction. And while some treatments have little impact on sexual function, others have a profound effect, changing body parts and hormones, contributing to fatigue, nausea, and more.
Chemotherapy, for example, works by killing rapidly dividing cells. But while it kills cancerous cells, it can also damage organs such as the ovaries, which produce important hormones like estrogen, directly impacting the menstrual cycle. Sometimes, this cell death can cause women to go into “chemical menopause,” an often temporary—but sometimes permanent—time of no menstrual cycles, explains Johanna D'Addario, MHS, PA-C, a physician assistant at Smilow Cancer Hospital who specializes in gynecologic oncology.
Another form of cancer treatment, radiation therapy, uses high-energy rays to kill cancer cells; it can also damage key reproductive structures like ovaries, causing permanent menopause. This is particularly true when radiation is used in the pelvic area. Radiation can also cause scarring of the vagina, which can lead to painful sex.
Fertility preservation: an important conversation
If cancer treatment involves the removal of reproductive organs or takes place before a woman naturally goes through menopause, fertility preservation becomes a conversation, too. “We have known for many years that we can collect and save sperm before men undergo surgery or radiation to the testes; however, we now can also save eggs from women before they have any type of chemotherapy, and get them fertilized and implanted into the uterus after the woman is cured of her cancer,” says Dr. Minkin.
In men’s cancer, “treatments can have a significant effect on quality of life in terms of intimacy,” says Dr. Honig. Localized prostate cancer, for example, may involve surgery to remove the prostate, which leads a significant portion of patients to have intimacy issues, such as erectile dysfunction. It can also lead to “dry” ejaculation—when semen doesn’t leave the penis upon ejaculation—and, in turn, a lack of fertility.
While prostate cancer tends to impact men over 50, in younger men—or in men who are still hoping to have biological children—fertility preservation and freezing sperm are topics that should be discussed.
This is particularly relevant in testicular cancer, which tends to impact younger men, Dr. Honig says. “It’s important that we ask our patients about their fertility status before they consider having therapy [surgery, chemotherapy, or radiation] that can affect their sperm.”
Yale Medicine Urology is aggressive in both preserving fertility and evaluating options after treatment for individuals who wish to have a biological child, he adds.
The psychological effect of cancer on sexuality
There’s a host of psychological issues at play when it comes to cancer and sexuality as well. “Some of it is physical, some of it is emotional, and some of it is a combination of the two,” says Dr. Honig.
“It's not uncommon for individuals [with cancer] to experience issues around sexuality or desire without any physical cause contributing to it,” says Dwain Fehon, PsyD, an associate professor of psychiatry and chief psychologist at Yale New Haven Hospital.
Cancer and cancer treatments also change the body, impacting aspects of sexual wellness such as body image and sensations. Someone who has had a mastectomy, for example, might view their body differently. “Frequently, we hear, ‘I don’t feel like myself,’” says Dr. Ratner. “It can be difficult to want to have sex or feel intimate when you perceive yourself differently.”
In men undergoing treatment for prostate cancer, intimacy after treatment is very important. Dr. Honig says they are able to help most men restore their sexual function and enjoy intimacy again. “This has become one of the important points that we stress as we evaluate patients before and after treatment," he adds.
Partnership is a part of the story, too. Sometimes, people don’t feel comfortable talking about sex or sharing fears or concerns around sex and cancer with their partners. Other times, an individual may struggle with how to approach these sensitive topics on a date.
There can be a sense of fear and loss, too. There can be guilt. Many gynecologic cancers come to attention through intercourse, when a woman has had bleeding after sex, says Dr. Ratner. This can make sex feel traumatic. In the case of prostate cancer, if a man is struggling with erectile dysfunction, he may feel embarrassed or confused. The related emotions are often complex and deep.
“Increasingly, we recognize that most medical problems have a psychological component, either contributing to the medical problem in the first place or as a consequence of the medical illness or the treatments,” says Fehon.
Yet, despite this, emotions around sex and cancer are often kept to oneself.
As the American Cancer Society makes clear on its site, many medical professionals don’t ask about sexuality. One survey of gynecologic oncologists found that less than half routinely asked about sexual health; 80% said they felt as though they didn’t have enough time for this conversation during patient visits. Others felt they lacked the training to appropriately handle patient concerns around sexuality.
Sometimes, conversations about sex just don’t feel pressing. Patients might not have the energy for intimacy—let alone the desire to think about it, says D’Addario. Quality-of-life issues have a way of taking a back seat to the treatment and whether it’s working against the cancer, she adds. “However, a common story from patients is that they want to stop their treatment. Why? The side effects—things like nausea and fatigue—are simply too great,” says D’Addario.
The SIMS Program
If you were to become a patient at Smilow’s Sexual Intimacy & Menopause Program today, you would meet both with practitioners who specialize in oncology and menopause, as well as those who specialize in psychology and psychiatry. Providers integrate mental health therapies, such as cognitive behavioral therapy, with hormonal treatments or medications, into the care plan.
“We treat physical issues such as vaginal dryness and pain, we prescribe hormone replacement therapy and other medications, but we also provide education and emotional support,” says D’Addario. “We offer follow-up meetings with our psychology team, work on helping patients to have difficult conversations with partners, and refer patients to our physical therapy colleagues who teach women how to adjust to their new bodies,” says D’Addario.
At Yale Medicine Urology, Dr. Honig adds that he sees patients before procedures for prostate or testicular cancer. “I give them a sense of what they can expect, and we outline a plan for them,” he says. “Reassuring patients that we have a plan to help them with intimacy issues reduces the already high stress associated with being diagnosed with cancer.”
There’s another valuable aspect of treatment at SIMS, perhaps the most powerful one: validation, says D’Addario. Issues with sexual dysfunction after cancer are real, common, and treatable—and reminding patients of this can help strip away shame and stigma. “I often tell people, ‘This is not a problem with you, but rather because of what you've been through,’” says D’Addario.
Normalizing the experience can be healing in and of itself. Dr. Ratner says that when she started this work, patients would tell her they thought they were the only ones to have this experience. “They were relieved to hear that sexual issues are common throughout cancer and that treatment is possible,” she says.
More work on sex and intimacy after cancer needs to be done
The program is changing the way cancer physicians practice medicine—and hopefully, the way patients receive care. There are still challenges, notes Dr. Ratner: a lack of funding, insurance coverage gaps, and cultural issues all present roadblocks. Advocacy work is almost as big a part of the job as providing treatment, she says.
But ultimately, while the Yale programs are about treatment—psychological and medical—they’re really about the patients. “We want to have a good understanding of the whole person,” says Fehon.
A common definition of survivorship isn’t just living with or through cancer—it’s living beyond it. “People come to us at all stages, with all types of concerns,” says D’Addario. “Our goal is not to tell you what intimacy should be. Our goal is to help you find and achieve what you want intimacy to be.”
“We're all intimate beings. It’s about listening to the patient and figuring out what their needs are,” says Dr. Honig.