Women with cancer have sexual health ignored by doctors – 02/04/2023 – Equilibrium

Débora Lindley López was 28 years old when she was diagnosed with stage 3 breast cancer. Within three weeks, she began chemotherapy and was thrust into drug-induced menopause. López developed vaginal dryness so severe that her skin began to deteriorate and was covered in small, paper-cut tears. Urinating was uncomfortable; sex, agonizing.

But when López, now 31, told her oncologist about the vaginal pain she was experiencing and how her libido evaporated almost overnight, she said he responded dismissively, telling her that if he had a penny for every time he heard such complaints would be a rich man sitting on a beach. And he suggested that she tell the nurse about these symptoms, López says.

“It was horrible,” he recalls, crying. “It made me feel like I could be thinking about something other than the cancer. Merely asking felt embarrassing.”

Cancer can devastate a woman’s sexual function in countless ways, both during treatment and in the years afterward. Chemotherapy can cause vaginal dryness and atrophy, similar to what López experienced, but it can also be the source of problems like mouth sores, nausea and fatigue.

Surgery, such as a hysterectomy or mastectomy, can deprive women of sensations essential for sexual arousal and orgasm. Pelvic radiotherapy can lead to vaginal stenosis, shortening and narrowing of the vagina, making intercourse painful, if not impossible. Sadness, stress, and body image issues can quench any sense of sexual desire.

“The damage done is not just physical, although women certainly experience damage to their bodies from cancer and treatments,” says Elena Ratner, a gynecologic oncologist in the Sexuality, Intimacy, and Menopause Program at Yale Medicine. “From the diagnosis to their fear of recurrence and how they view their bodies, they feel their whole sense of self has changed.”

In the last decade, especially in recent years, there has been a significant increase in studies on how cancer alters women’s sex lives, during and after treatment. Ratner and other experts who work at the intersection of cancer treatment and sexual health are encouraged that the research world has finally begun to grapple with these complex side effects — which were largely ignored by previous generations of women, he points out.

In 2022, for example, one study found that 66% of women with cancer experienced sexual dysfunction such as orgasm problems and pain, while nearly 45% of young women cancer survivors remained uninterested in sex more than a year after diagnosis. Researchers have also found a high prevalence of issues such as vaginal dryness, fatigue and body image concerns among women with lung cancer – findings underscore that the consequences can occur in all types of cancer, not just breast or gynecological.

Yet some of that same research — combined with stories from patients, advocates and doctors — suggests that increased scientific interest has not made much practical difference for women. While López’s story offers an example of extreme provider indifference on the issue, experts say the challenges she faced in seeking help for her problems are not unique.

“The number of women affected by sexual health problems after cancer diagnosis is huge, and they are in great need of medical care for sexual dysfunction after cancer,” says Laila Agrawal, an oncologist specializing in breast cancer at the Norton Cancer Institute. in Louisville, Kentucky.

“There is a gap between the need and the availability of these women to receive care.”

Why Better Research Doesn’t Improve Treatments

Sharon Bober, a psychologist and director of the Sexual Health Program at the Dana-Farber Cancer Institute, points out that several factors helped to improve the research. On the one hand, survival is increasing (in 2022, there were 18.1 million male and female cancer survivors in the United States; by 2032, an estimated 22.5 million). There is also a greater understanding within medicine and society at large that sex and sexuality are important components of overall health, points out Bober.

Since 2018, she added, the American Society of Clinical Oncology has urged providers to initiate a discussion with all adult cancer patients — women and men — about the potential effects of cancer and cancer treatment on sex.

But some women say they are still met with silence.

Cynthia Johnson, 44, of Texas, was diagnosed with stage 2 breast cancer at age 39, and says she is “grateful for life and life-saving treatments.” But that doesn’t negate her frustration that none of her doctors ever mentioned her sexual health.

“They don’t say you’re going to experience dryness. They’re not saying you’re going to experience a lack of desire,” Johnson points out. “They don’t say that if you ever feel like having sex you’ll feel like razor blades.”

Research supports this experience and also suggests that there are significant gender discrepancies in those who are asked about sex. A 2020 survey of 391 cancer survivors found, for example, that 53% of male patients were asked about their sexual health by a healthcare professional, while only 22% of female patients said the same. And findings presented last year at the annual meeting of the American Society for Radiation Oncology, focusing on 201 patients undergoing radiation for cervical or prostate cancer, concluded that 89% of men were asked about their sexual health at the first visit, in compared to 13% of women.

Jamie Takayesu, a radiation oncology resident at the University of Michigan’s Rogel Cancer Center and lead author of the study, points out that the research was inspired by her own nagging feeling that she wasn’t asking patients about sex often enough, and she he suspected his colleagues didn’t either. She has a few hypotheses as to why: Prostate cancer has a high survival rate, Indica, so doctors may be more inclined to look into quality-of-life issues after treatment. But she also noted that there were “better” and “more formalized” tools for assessing sexual function in men, and that many cancer doctors – including her – received little or no training in how to talk about sex.

Doctors say that until that changes, this type of talk is unlikely to become standard practice.

“This should be included in the routine investigation, so it’s not something special or different, and it’s not based on a healthcare professional’s perspective of whether someone is sexually active,” says Bober. “Many women have said to me over time, ‘Nobody asked’.”

How and where to get help

Despite these significant headwinds, there are effective treatment options and interventions.

Both Ratner and Bober work in multidisciplinary sexual health programs that, in many ways, represent the gold standard of care. A patient can see a gynecologist, a pelvic floor therapist who can help with treatment options like dilator therapy, and a psychologist who can deal with emotional difficulties. (Bober claims that, until very recently, she could probably count the number of such centers on one hand; now she estimates that there are “up from ten and under a hundred” in the United States.)

A year and a half after his cancer diagnosis, López drove to one of these centers at Northwestern University in Chicago. At his appointment, he spent time with a clinical sexologist who cried during the pelvic exam. “She said, ‘You’re 29 years old and your vaginal area looks like you’re 80,'” recalls López. The sexologist gave her information about vaginal rejuvenation with laser therapy and recommended several estrogen creams to help with vaginal atrophy.

It was reassuring “just to sit in that office and have someone put their hand on my shoulder and say, ‘Hey, this is important. And anyone who says it’s not is wrong,'” says López.

Although these types of programs are becoming more plentiful, they still tend to exist in large hospitals or urban cancer centers, and many women in the United States may not live close enough or lack the resources or health insurance coverage to regularly access these programs. care. But even if going to a sexual health center is impossible, most women just need a “baseline,” says Lisa Egan, an attending physician with a focus on gynecological oncology who leads the Sexual Health Program for Women Impacted by Cancer at the University of Oregon Health and Science.

Who this “home base” is can vary. In general, it just needs to be a provider that offers help and support. Egan points out that this could be the patient’s primary care physician, a cancer doctor or nurse. Bober says it could be a gynecologist or a sex therapist. Agrawal also points out that the International Society for the Study of Women’s Sexual Health has a database of providers who focus, at least partially, on women’s sexual health issues, so it might be a useful starting point.

To see if providers are in a position to help, it may be worth asking at the outset how their experience has helped women with sexual dysfunction during and after cancer, and if they would be comfortable helping you put together a plan to deal with it. her problem — even if it means referring her to other doctors, says Bober.

All physicians interviewed for this story also noted that online communities and advocacy groups can be helpful resources. Johnson, for example, is an ambassador for For the Breast of Us, which provides community help and support for black women affected by breast cancer. López works for the Young Survival Coalition, a non-profit organization specifically focused on the needs of young adults with breast cancer. These types of groups offer a platform for women to exchange information, connect with providers and find solidarity – particularly when the medical world struggles to fully respond to their needs.

“I really want women with cancer to know that sexual health issues are treatable medical issues and can get better,” says Agrawal. “I want to offer this as a hope.”

Translated by Luiz Roberto M. Gonçalves