Maintaining a happy sex life in a 12-year marriage isn’t easy. Add breast cancer, a BRCA1 genetic mutation diagnosis, and a hysterectomy to the mix, and it’s damn near impossible.
“I have to get mentally jazzed and my husband has to feel like it’s going to be OK,” said Emily, a 53-year-old breast cancer survivor who carries this mutation, making her more susceptible to developing breast, ovarian, and other kinds of cancers. “It cuts into the sexual feeling.” (Emily’s name has been changed upon her request.)
September is National Ovarian Cancer and Gynecologic Cancer Awareness Month, according to the American Cancer Society, and while many organizations do great work promoting screenings, treatment, and prevention—such as Tell Every Amazing Lady About Ovarian Cancer, the Louisa M. McGregor Ovarian Cancer Foundation (T.E.A.L.), the National Ovarian Cancer Coalition, the Foundation for Women’s Cancer, and many others—there is still an overall lack of dialogue around the sexual health and well-being of survivors once the cancer itself has been addressed.
“There are varying degrees of importance for different people,” Dr. Sharon Bober, director of the Sexual Health Program at the Dana-Farber Cancer Institute-Harvard Medical School, told Rewire when referring to sexual health. “But in a basic way, clinicians do not get any training about how to address that aspect of the human experience in any systematic way.”
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Bober explained that sexual health broadly refers to the physical, emotional, and interpersonal experience related to sexuality and intimacy. For example, women who undergo treatment for ovarian cancer commonly experience a range of treatment-related consequences that can affect sexual health, such as vaginal dryness and vaginal atrophy, pain with intercourse, and changes in body image and self-esteem. Women who have preventive surgery in order to lower their risk of breast and/or ovarian cancer face similar problems as well as other potential challenges, such as undergoing sudden, treatment-induced menopause; changes in body image related to changes in body integrity; and loss of breast sensation.
Based on a multi-disciplinary approach, Bober’s program specializes in “addressing patients’ concerns about sexual health as an integral part of their care, from diagnosis and treatment through survivorship” by providing education, consultation, and personalized rehabilitation counseling for patients and their partners who have experienced changes in sexual health during and after cancer treatment.
Bober told Rewire these issues are amplified in the larger context of sexuality in our society. Though sex is a pervasive part of popular culture, there is little honest discussion of real sexuality, meaning discourse about the challenges that real individuals have with sex and intimacy rather than the fantasy depictions of sex that we are confronted with in the media.
She said it’s still a taboo subject that makes some people uncomfortable and when people feel like their experience does not measure up to these idealized or distorted expectations, they often feel bad about themselves. The topic becomes even more difficult to tackle when people have additional challenges such as those that come from cancer treatment.
“People aren’t sure what to say or how to approach the topic,” she said. “Medical providers often do not have a clinical toolkit [or a set of skills] on how to address this issue [with patients].”
Emily felt this after she had her ovaries, uterus, and fallopian tubes removed during a prophylactic oophorectomy, a procedure done in order to significantly reduce her risk of gynecological cancers.
A prophylactic oophorectomy reduces the risk for breast cancer in premenopausal women by 50 percent and ovarian cancer by 80 to 90 percent. For women with genetic mutations, more and more medical professionals are advising them to have these prophylactic procedures earlier on. However, one of the risks is early onset menopause, which can cause vaginal dryness, sexual problems, sexual dysfunction, osteoporosis, and cardiovascular disease, according to the Mayo Clinic.
After she had her procedure at age 45, Emily was flung into terrible menopause.
She said she was unable to have an honest, non-protocol oriented conversation with her oncologist about how to alleviate her menopausal symptoms or what was even a normal post-surgery symptom and what wasn’t.
“Nobody warned me,” she said. “They don’t tell you what’s normal recovering and you’re left to wonder, ‘Am I okay? When do I call the doctor and when do I just suffer?’”
Emily told Rewire she started having and still has terrible hot flashes and her libido significantly decreased, among other things.
“I have four to five hot flashes an hour,” she said. “Try having sex when you always have hot flashes. I don’t want to [have sex] because I’ll be sick and I’m electrifying my husband.”
Emily’s prophylactic oophorectomy is not uncommon nowadays. Some form of a hysterectomy procedure—either total, partial, or radical where the uterus, cervix, ovaries, and/or fallopian tubes are removed—is the second most common surgery for women in the United States, with nearly 500,000 performed in 2010.
Flora Poleshchuk, a genetic counselor at Myriad Genetics Inc., said that while ovarian cancer in particular is rare, it is quite deadly, as it is the leading cause of death from gynecologic cancers in the United States and is the fifth leading cause of cancer death among U.S. women. Having a preventive surgery is one of the ways to significantly reduce your risk of cancer, but the internal risks of the surgery itself—osteoporosis, early onset menopause, heart disease—need to be considered. When discussing preventive measures with doctors and in consultation with their health-care providers, patients need to consider the age where the benefits outweigh the risks, she said.
“Menopause is not something that happens like a gunshot,” Poleshchuk said. “It’s like a curve. It happens over many years. But if you subject a woman to that process 20 years too soon, that has internal implications.”
That is one of the things concerning Autumn Tansey, a 26-year-old colon cancer survivor, who discovered she had the genetic mutation known as Lynch syndrome, which increases her risk of developing colon, rectum, uterine, ovarian, and other types of cancer.
Because of her increased risk of gynecological cancers, Tansey has discussed the idea of a hysterectomy in the future with her doctor, but she said she is hoping there are other options so she doesn’t have to put her body through such an extreme procedure that has monumental side effects.
“It’s another ten to 15 years away, so maybe the technology by then [will mean] I don’t have to,” she told Rewire, referring to her hope that there will more reliable screenings for ovarian cancer in the future. “If I had the choice to not do that [have a hysterectomy], I’d choose not to. It just seems so devastating for the body to go through something that’s not a natural process.”
Tansey discovered her colon cancer at age 22 and went through 12 rounds of chemotherapy over six months, which caused severe fatigue and for her, neuropathy, or nerve damage through her hands, feet, and up her legs to her genital area.
“I was broken emotionally,” she said. “My spirit was completely destroyed. And I got really scared thinking, ‘Oh no! What if [the chemotherapy] makes me completely numb [down there]?’”
Tansey said she wanted to propel herself back into a healthy life and became very interested in wellness. She said she still occasionally has pain during sex, but her long-term partner has been very kind and understanding through this process.
“It’s very occasional, but it’s quite an intense pain where I have to be like, ‘Wait stop! Move positions!” she said. “But, it’s not something that becomes a huge deal [for us], which is a good thing.”
However, it can be a huge deal for some couples. In November 2009, a study published by the journal Cancer titled, Gender Disparity in the Rate of Partner Abandonment in Patients with Serious Medical Illness, found 11.6 percent of marriages of their 515 participants ended in either separation or divorce after the diagnosis of a serious illness, either a brain tumor, cancer, or multiple sclerosis. The most significant statistic: The affected partner was a woman in 88 percent of the separations.
“Female sex was found to be the strongest predictor of divorce or separation in each of the 3 patient populations [those affected by a brain tumor, cancer or multiple sclerosis],” the study found.
Emily’s husband, Jeremy (a pseudonym) believes men—especially younger men—tend to be overly selfish, more so than women in these situations.
“What we faced could have been very destructive for other people,” he said. “I’m not as certain if I would have been as able to deal with it in my 30s as I have in my 50s.”
To Jeremy, it’s not just the men in these relationships who are not considering the overall well-being of their partners, but also the doctors. The Henry J. Kaiser Family Foundation found that 65 percent of physicians are male as of June 2015. Jeremy said he believes his wife’s surgeon was more sensitive to her needs because she was a woman.
“Most physicians do not understand how traumatic this can be to the woman,” he said. “They think, ‘Our job is to keep you alive and not to deal with the emotional side.’ And these men are telling these women what to do [with their bodies].”
Poleshchuk, who has been practicing genetic counseling since 2012 and previously worked at the Maimonides Medical Center in Brooklyn, New York, said it’s critical for patients to be honest with themselves about what is important to them and communicate that with their physicians. If sex is something that’s important, Poleshchuk added, inner fears and desires around that need to be validated.
“Every human being is an individual; there’s no such thing as normal,” she told Rewire. “The range of human sexuality is very large and the norm is what the norm is for you.”
Bober suggests women be proactive about their sex lives. Women must learn about vaginal health such as how to restore elasticity to vaginal tissue and how to use vaginal moisturizers if necessary. Women also need to feel empowered to have open conversations with doctors and partners. She said there is plenty providers can do to help this aspect of well-being; it’s just a matter of getting the information out there for people.
“There is a lot we can do for desire,” she said. “Women deserve and should have access to that kind of care.”
Emily is hopeful that society is in a transitional stage right now and because of new services, evolving technology, and especially the Internet, women won’t have to go through such traumatic experiences alone.
“We’re so into the drugs and finding [the cancer] and everything that we’re missing the main point,” she said. “We need to talk about the whole person. That makes the difference between surviving and enjoying your life.”