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Talking about Sex and Intimacy an Unmet Need

Survey results show communication barriers

October 4, 2012

Written By Nicole Katze, MA, Writer and Editorial Coordinator
Reviewed By Michael L. Krychman, MDCM

Seventy-six percent of women with breast cancer report never asking an oncologist or nurse about problems with sex life during or after treatment, despite nearly the same amount believing such conversations important, a recent study showed.

The finding is part of a larger analysis that asked men and women with several types of cancer about their experiences talking about sex with healthcare professionals.

Study Background

Sexual issues can be caused by a variety of cancer treatments as well as the emotional and psychological stresses of dealing with a cancer diagnosis. Sex and physical intimacy are important components of quality of life, and sexual concerns often add to the emotional stresses of cancer by disrupting relationships and negatively impacting body image.

Even so, sexual problems often go unaddressed during and after cancer treatment. Researchers organized survey questions and focus groups to explore people’s experience of talking about sex with oncology professionals.

Study Structure

Participants were recruited through the Duke University tumor registry, Duke University Medical Center and the website NexCura.com.

The survey respondents were 819 people over age 18 with breast, prostate, lung, colorectal, gynecological or other cancers. Most answered the surveys online; participants from the Duke tumor registry and NexCura had the option of answering by telephone.

The 109 people who participated in 16 focus groups gave specific examples to clarify the survey findings. Participants were divided by diagnosis, gender, stage of treatment, and time since diagnosis: within six months (in treatment) or 12-plus months since diagnosis (not in treatment).

Findings

This survey found that 78 percent of participants thought it was important to talk about sex and intimacy issues with healthcare providers, but only 45 percent received information about it from their care team. More women than men reported not receiving information.

Of total participants, 252 were women with breast cancer. Among these women:

  • 54 percent received no information from healthcare providers about how treatment might affect sex life
  • Of those who received information, almost all were satisfied to some degree with the amount of information given  (the researchers did not ask what kind of information they received or in what form) 
  • 76 percent did not ask questions about problems with sex life. The primary reasons for not discussing sexuality were discomfort with the subject due to the healthcare provider’s age or gender,  a belief the provider was too busy, feelings of shyness or embarrassment, or beliefs the problems were not severe enough to ask for help and further information
  • 76 percent believed a frank dialogue about sexuality was important
  • 63 percent thought intimate partners should be included in discussions about sexuality

Recommendations

 The researchers suggest that all members of the oncology healthcare team need to take responsibility for informing people about how treatments may directly and indirectly impact sex, sexual function and intimacy.Such discussions should be a routine part of oncology care.  

More research is needed to determine the mode of information (print, online, audio-visual or one-on-one instruction) most effective at explaining sexual function concerns.

What This Means for You

This survey demonstrates that many people with cancer want to discuss potential or existing problems with sexuality and intimacy during and after cancer treatment.  But in many cases,the provider may not enough or any information.

It is vital to know how treatment and treatment-related side effects may impact your quality of life, including intimacy and sexuality. If this is of concern to you, know you are not alone! There are many ways to bring up the topic. For tips, and to learn more about how breast cancer treatment may affect your sex life, pre-order LBBC’s new Guide to Understanding Intimacy and Sexuality.

Flynn, Kathryn E., Reese, Jennifer Barsky et al. Patient experiences with communication about sex during and after treatment for cancer. Psycho-Oncology (2012) 21:594 – 601

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