Cancer Patients Want Their Sex Lives Back – but Are Afraid to Ask

Sexual health among cancer survivors remains an unmet need and neglected sex lives pose a significant threat to patients' and their partners' quality of life.

A Problem That Grows as It Is Overlooked

Dr. Don Dizon, director of women's cancers at the Lifespan Cancer Institute in Rhode Island, said, "Oncologists need to understand that this is a problem, ask the questions, and provide information resources about sexuality in cancer." He added, "Regardless of their age, cancer survivors or cancer patients who cannot be intimate with their partners should not be assumed to be untroubled by this. Sexual health is an issue for every single person."

Dizon said patients are often reluctant to tell their doctor that their treatment has caused sexual side effects. On the other hand, he added, oncologists are not formally trained in follow-up and care for cancer survivors and often feel unprepared to raise sexual concerns with patients.

Two Patients' Stories and Their Business Venture

Two cancer survivors in England decided to take control. Last October, Brian Lobel and Joon-Lynn Goh partnered with the Women’s Erotic Store to launch sexwithcancer.com, the United Kingdom’s first online sex shop for "people with cancer and cancer survivors."

The website offers practical solutions, peer-led advice, curated products and help with sex lives based on advice from psychosexual therapists and other experts who answer a list of the top 25 questions cancer survivors have about sexuality.

Other offerings intended to start this conversation about patients' sex lives include a Certificate of Competency in Talking about Sexuality in Cancer course.

In an email, Lobel said, "It is still a little early to discuss company data." He added, "But we have been impressed by all the responses from both people with cancer and cancer survivors and from professionals."

Asked what the most popular items have been so far, the answer was lube and a badge for healthcare professionals reading "Sex with Cancer Conversation Champion." Lobel said, "Could this start a conversation? Could it empower a patient to ask a question? We hope so," he said.

Normalizing the Conversation

Areej El-Jawahri, a professor of medicine at Harvard Medical School, says, "For cancer survivors, the first step toward improving care is to screen for problems affecting sexual health and intimacy and to normalize talking about them."

"What I often learn from my studies is that if the doctor or healthcare professional is comfortable raising and talking about the subject, it creates a more comfortable environment for the patient to share their concerns."

El-Jawahri, who also directs the bone marrow transplant program at Massachusetts General Hospital Cancer Center, notes that patients with hematological cancers face many of the same sexual health risks as patients with solid organ tumors. Hematopoietic stem cell transplantation also carries a risk of chronic graft versus host disease that affects sexual function.

To help oncologists address the sexual health of patients with cancer, a clinical practice guideline was published by the American Society of Clinical Oncology in 2017.

This guideline recommends that a member of the healthcare team initiate the conversation 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 function and satisfaction.

Nevertheless, the authors of a 2021 literature review published in the Journal of Cancer Survivorship concluded that healthcare professionals need to be better communicators, whether in person or online.

The authors, led by Vicky Lehmann of Amsterdam University Medical Center, say, "There has been a call for years to improve communication about sexuality in oncology, but translation into clinical practice appears inadequate, given that patients and survivors still emphasize insufficient care in this area."

"There seems to be a disconnect between advocating and delivering adequate care, which may relate to how problems are identified and solved in the clinical setting" they add.

Patient responses collected in a 2020 survey by radiation oncologists show that much remains to be done. Among the 391 participating patients with breast, uterine, bladder, prostate and rectal cancer, 9 out of 10 reported sexual side effects after treatment, but only 28% said healthcare professionals had asked them about sexual health.

Lead author James Taylor, a radiation oncologist at the Sidney Kimmel Cancer Center at Thomas Jefferson University in Pennsylvania, said oncologists need to be clear about treatment-related risks and side effects before patients begin treatment.

In the survey, 51% of patients with cancer said they would feel more comfortable discussing their sexual health if a healthcare professional initiated the conversation. They also wanted their responses to a questionnaire to guide the conversation.

Taylor concludes that it is time to put all the validated questionnaires into practice.

"We are getting really good outcomes with many cancers now, and we need to think about how these patients will live for the next 20 or 30 years" he said.

Men and Women

The survey also highlights gender bias in sexual health counseling. Before 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 and 5% of women had undergone formal assessment. In other words, the sexual health of male cancer patients is addressed more often.

Shari B. Goldfarb, a medical oncologist at Memorial Sloan Kettering Cancer Center (MSKCC) in New York, said, "We need the same thing for women who have survived cancer." She notes, "Most women with early-stage breast cancer are alive and have been followed as cancer survivors for 5 years."

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

Study author André Deschamps of Limburgs Universitair Centrum in Belgium told Medscape Medical News when the study was published last year that the lack of discussion about the effects of prostate cancer and its various treatments was "the crux of the problem."

Deschamps, who chairs the European Prostate Cancer Coalition, added, "It drives me crazy when people say a man in his 70s has no sex life." He said, "Our study gives you a real picture of quality of life after treatment. We know it is affected far more than the medical world tells us."

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

Small Changes, a Big Difference

Goldfarb of MSKCC, who treats patients with breast cancer, said small changes can make a big difference. She routinely asks patients to complete a symptom-and-complaint checklist while in the waiting room, explaining that this allows symptoms to be identified quickly and normalizes the conversation.

Goldberg also emphasizes not assuming that only young patients have sexual health concerns. "Older patients with breast cancer also have sexual health concerns they want to discuss" she said.

In an article in the online journal ecancer, Liz O’Riordan, a consultant breast cancer surgeon in the United Kingdom, said, "It is really easy to improve the cancer treatment journey, and often it is the little things that can make the biggest difference."

You Only Need to Ask Patients

 As we have previously written on our website, Dr. Liz O'Riordan was diagnosed with stage 3 breast cancer at age 40.

She said that before developing breast cancer, she had never discussed sexuality with her patients. O’Riordan admits, "I did not think it was my job," she says. Now she recognizes her responsibility to "empower patients to start living again."

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

The Most Important Thing Is Opening That Door

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

If you do not have resources, find them and connect with those who do, Dizon suggested. Dizon, who also heads the Sexual Health First Responder Clinic at Rhode Island Hospital, said, "We partner with physical therapists for lymphedema, so find the advocate in your community who will address sexual health concerns."

He explained that at the clinic, sexual intimacy problems in both men and women undergoing cancer treatment are addressed under an oncologist's leadership in consultation with palliative care physicians, nurses, social workers, medical rehabilitation specialists, nutritionists and psychiatrists.

The first appointment includes a comprehensive introduction and physical examination, and a 1-hour couples counseling session gives patients and their partners a safe space to discuss sexual health concerns.

Dizon said that, with improving survival rates, patients with cancer "should not have to give up their sexual health because of cancer."

"My hope going forward is that these issues will be more readily addressed by cancer centers wherever they are" he added.