Cancer Survivors Want Their Sexy Back…but Are Afraid to Ask

Kristin Jenkins

December 01, 2021

Sexual health remains an unmet need in cancer survivors and poses a significant threat to their quality of life, say researchers and experts alike.

"Oncologists need to recognize that this is an issue, ask the questions, and provide the resources," emphasized Don Dizon, MD, director of women's cancers at Lifespan Cancer Institute in Providence, Rhode Island. "We have to stop presuming that not being intimate isn't bothering the cancer survivor or cancer patients whatever their age. There is no profile of a person in whom sexual health isn't an issue."

Patients are often reluctant to tell the doctor that their treatment has caused sexual side effects. "The last thing you want to do is make your doctor uncomfortable," he pointed out.

On the other hand, oncologists aren't formally trained in survivorship care and often feel ill-prepared to broach the topic of sexual concerns with patients, he told Medscape Medical News.

In the United Kingdom, two cancer survivors decided to take control. Last October, Brian Lobel and Joon-Lynn Goh partnered with Sh! Women's Erotic Emporium to launch, the UK's first online sex shop for "people living with cancer and beyond."

The site offers practical solutions, peer-led advice, curated products, and sex aids based on recommendations from psychosexual therapists and other experts who responded to a list of survivors' top 25 questions about sex.

Other offerings aimed at getting the conversation started include the Sex with Cancer Conversation Competency Certification Course.

"It's still a bit too early to talk firm data," Lobel said in an email. "But we're moved by all the responses, both from people with and beyond cancer, and from professionals." 

The hottest items so far? Lube and a badge for healthcare professionals that reads, "Sex With Cancer Conversation Champion." "Might this start a conversation? Empower a patient to ask a question? We hope," Lobel said.

First Step

"The very first step to improve the care of our cancer survivors is to screen for issues affecting sexual health and intimacy and to normalize discussion of the topic," points out Areej El-Jawahri, MD, associate professor of medicine at Harvard Medical School in Boston, Massachusetts.

"I have learned from my practice that often, if the provider is comfortable bringing up and talking about the topic, it creates a comfortable environment for the patient to share their concerns," she told Medscape Medical News.

El-Jawahri, who is also director of the bone marrow transplant program at Massachusetts General Hospital Cancer Center, notes that patients with hematologic malignancies face many of the same sexual health risks as patients with solid tumors. Hematopoietic stem cell transplantation carries the added risk of graft-versus-host disease, which affects sexual function, she added.

A clinical practice guideline aimed at helping oncologists address the sexual health of patients with cancer as an essential part of survivorship care was published by the American Society of Clinical Oncology in 2017.

It recommends that discussion be initiated by a member of the healthcare team and that psychosocial and/or psychosexual counseling be offered to all patients with cancer to improve sexual response, body image, intimacy, and relationship issues, as well as overall sexual functioning and satisfaction.

Even so, the authors of a 2021 literature review published in the Journal of Cancer Survivorship concluded that healthcare providers need to be better communicators, whether it's in person or online.

"There has been a call to improve sex-related communication in oncology for years, but the translation into clinical practice seems suboptimal given that patients and survivors still highlight inadequate care," write the authors, led by Vicky Lehmann, PhD, from Amsterdam University Medical Center, Cancer Center Amsterdam, in the Netherlands.

"There seems to be a disconnection between advocating and implementing adequate care, which may lay in how to identify and tackle problems in the clinical setting," they add.

Patient responses collected in a 2020 survey by radiation oncologists suggest there is a lot more work to be done. Of the 391 patients with breast, endometrial, bladder, prostate, and rectal cancers that took part, 9 out of 10 reported sexual side effects following treatment, but only 28% said they were asked about sexual health by their healthcare provider.

Oncologists have to be clear about the risks and toxicities associated with treatment before patients start therapy, said lead author James Taylor, MD, chief resident in radiation oncology at the Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia, Pennsylvania.

"There is an easy take-home," he told Medscape Medical News. "This is a core part of the conversation and it should be discussed with any malignancy."

In the survey, 51% of patients with cancer said they would be most comfortable talking about their sexual health if the discussion was initiated by a healthcare provider. They also wanted the conversation to be guided by their responses to a questionnaire.

Taylor concludes it's time to put all validated questionnaires into practice.

"We're having really good outcomes with a lot of cancers now and we have to think about how these patients are going to be living for the next 20 or 30 years," he said.

Men vs Women

The survey also highlights the presence of gender bias in sexual health counseling. Prior to treatment, 53% of male patients said they had been told about the associated risks of sexual dysfunction compared with 22% of female patients. In addition, 32% of men had undergone formal assessment compared with 5% of women.

"We need the same for women who are cancer survivors," said Shari B. Goldfarb, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center (MSKCC) and Weill Cornell Medical College in New York City. "The majority of women with early stage breast cancer are alive and disease-free at 5 years," she notes.

The attention paid to sexual dysfunction in men with cancer may eclipse that given to women, but it's still far from adequate, say other researchers.

The 2020 EUPROMS study of 2943 European men treated for prostate cancer showed that more than 75% rated their post-treatment sexual function as poor or very poor. One third said sexual dysfunction had the greatest impact on their quality of life, and 45% reported experiencing anxiety or depression. The mean age of the men was 70 years.

The lack of discussion about the impact of prostate cancer and various treatments is the "crux of the problem," study author André Deschamps, MBA, of Limburgs Universitair Centrum in Hasselt, Belgium, told Medscape Medical News when the study was published last year.  

"It makes me mad when people say a man in his 70s doesn't have a sexual life," added Deschamps, who is also chair of the European Prostate Cancer Coalition. "Our study shows you a real picture of quality of life after treatment. We know it is affected far more heavily than the medical world has been telling us."

Commenting on the article, Bruce E. Hodges, MD, a family physician in Kansas, wrote: "We never get too old to think about sex. We, in medicine, of all people, need to be empathetic..."

Small Changes, Big Difference

Small changes can make a big difference, said MSKCC's Goldfarb, who treats patients with breast cancer. She has them routinely fill out a symptom checklist while they're in the waiting room. This makes it possible to quickly pinpoint symptoms and normalize the conversation, Goldfarb explained.

"We ask, 'What are the side effects you're having with your medication?' and then provide a checklist with boxes to tick off. I find that it's really helpful to be able to say, "Oh, I see that you're experiencing some vaginal dryness. That's because of the aromatase inhibitors. I'm going to refer you to a gynecologist.'"

Goldberg also emphasizes not to assume only younger patients have sexual health concerns. "Older breast cancer survivors also have sexual health issues they would like to discuss," she said.

"It's actually really easy to improve cancer care and often it's the little things that can make the biggest difference," confirmed Liz O'Riordan, MD, a consultant in breast cancer surgery in Suffolk, United Kingdom, in an essay in ecancer, an online journal.

"You just have to ask the experts — the patients themselves," she writes

As previously reported by Medscape Medical News, O'Riordan was diagnosed with stage 3 breast cancer at age 40.

Before that, she said, she never talked to her patients about sex. "I didn't think it was my job," O'Riordan admits. Now, she recognizes that it's her responsibility to "empower patients to start living again."

Her advice: "Have difficult conversations about work, sex, exercise, dealing with the fear of recurrence. Educate yourself and your team so you know where to direct patients if they do need help."

Oncologists seeing patients for the first time should make questions about sexual health part of the medical history, Dizon suggested. Ask patients if they have a partner, whether they are sexually active, and their sexual preference. The most important thing is to "open that door," Dizon said. "Patients may not feel comfortable talking about their sexual health in that moment but knowing that the door is open may help them discuss it another time."

If you don't have resources, connect to those who do, Dizon suggested. "We partner with physical therapists for lymphedema, so find the advocate within your community to address issues of sexual health," said Dizon, who also heads the Sexual Health First Responders Clinic at Rhode Island Hospital.

At the clinic, sexual intimacy issues experienced by both men and women being treated for cancer are addressed in consultation with supportive care physicians, nurses, social workers, rehabilitation medicine specialists, nutritionists, and psychiatrists, he explained. Patients can refer themselves but the team works with the patient's oncologist.

The initial appointment involves a comprehensive intake and physical exam, and a 1-hour couples counseling session gives patients and their partners a safe space to discuss sexual health concerns.

With improved survival odds, patients with cancer "should not have to give up their sexual health because of cancer," Dizon commented.

"Going forward, my hope is that these issues will be more readily addressed by cancer centers no matter where they are located," he added.

Dizon, Goldfarb, and Taylor have reported no relevant financial relationships. El-Jawahri has reported relationships with Novartis, Blue Note Therapeutics, and GlaxoSmithKline

Int J Radiat Oncol Biol Phys. 2021;108:S136. Full text

J Cancer Surviv. Published online October 20, 2021. Full text

Eur Urol Focus. 2021;7:987-994. Abstract

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