When it comes to their sexual health, few women are told about possible changes in their intimate lives before they undergo treatments for gynecological and breast cancers. Many survivors agree it is a huge gap in their overall treatment that can leave women feeling desperate and alone to deal with their problems in silence.
Sexual problems in women after gynecological and breast cancer treatment are well documented — pain, dryness, loss of desire, difficulty with arousal and orgasm, negative thoughts and feelings during sex and changes in body appearance due to treatments, but few doctors discuss this with their patients.
Cancer survivors often struggle with body-image concerns, and don't feel attractive or feminine after treatment, says Dr. Stacy Tessler Lindau, a senior author of a study that examines the sexual needs of female cancer survivors.
Getting help isn’t easy either. Few centers in the United States have the expertise to treat sexual problems in women and girls with cancer, says Lindau, an associate professor of obstetrics and gynecology at University of Chicago Medical Center.
As a result, “Physicians will often empathize with a patient's concerns, but struggle with a lack of knowledge about how to help.
“Many women also don't discuss the issues with their spouse or partner,” she said in a written statement.
Lindau says while some women have the courage to raise sexual concerns with their doctor, numerous studies show most women would prefer to have the doctor initiate that discussion. But doctors rarely discuss the full impact of cancer treatments with women and girls with cancer, according to the studies.
By contrast, many physicians routinely address concerns about sexual function in the treatment of prostate cancer. Preservation of sexual function is a topic that is proactively addressed with men before a treatment decision is made and continues openly throughout prostate cancer care in many centers, Lindau said.
A survey of hundreds of gynecological and breast cancer survivors published online in the journal Cancer confirms more than 40 percent want medical help for their sexual issues but most don’t get it.
Lindau and her team surveyed 261 gynecologic and breast cancer patients and collected their medical records data. The mean age of the study participants was 55, with a range of 21 to 88 years. While only 7 percent of the patients surveyed had asked for advice or medical help for sexuality problems, 42 percent were interested in receiving such care.
In the study, younger women were more concerned about sexual issues than older women. However, more than 22 percent of women age 65 or older in the study also said they wanted medical care for their sexual problems.
Women who had been out of cancer treatments for more than a year were significantly more likely to want medical care for sexual concerns than women who were currently in treatment. Thirty-two percent of the women in treatment wanted to talk about sexual issues, while 47 percent of the women who were more than twelve months out from their last cancer treatment wanted medical care for sexual concerns.
Lindau says since a woman's sexuality is profoundly affected by physical and psychological issues after cancer treatments, "It is critical that physicians caring for cancer patients know that sexual concerns are often physical and can strain relationships, cause worry and stress, and be very isolating — many women come to us feeling ashamed, guilty, or alone. They feel like the problem is primarily in their head."
A 2010 University of Michigan study on sexual function in young adult cancer survivors, found “Female survivors appear to be far more significantly affected in their sexual functioning than are male survivors, with a symptom score being twice that of males.”
While the findings, published in the journal Psychooncology don’t necessarily mean women’s sexual lives are more problematic than those of male cancer survivors, it does show two different physiological and cognitive processes are at play in men’s and women’s sexual behaviors and attitudes.
“Women tend to operate within a cognitive framework of 'Am I desirable', whereas men operate from a vantage point of 'What do I desire?' ” according to the study.
In 2008, Lindau started the Program in Integrative Sexual Medicine for Women and Girls with Cancer (The PRISM clinic) at the University of Chicago to address and study women's sexual problems and currently serves as its director.
The clinic is one of only a few nationwide that offers women and girls comprehensive program to address sexual issues after cancer by specialists in gynecology, psychology, physical therapy oncology, and nursing.
Lindau and her colleagues are establishing a field of research with other cancer centers across the country to generate evidence about how best to treat the sexual problems that women experience after cancer. Lindau is also working with other physicians in her home state of Illinois and around the country to help build similar programs and develop best practices.
For more information on the PRISM Clinic or programs offered, visit http://www.uchospitals.edu/specialties/obgyn/prism.html or call (773) 702-6123 or toll free, 1 (888) UCH-0200, to schedule an appointment with a University of Chicago gynecologic oncologist.
Lynette Summerill, an award-winning writer and scuba enthusiast lives in San Diego, CA with her husband and two canine kids. In addition to writing about cancer-related issues for EmpowHER, her work has been seen in newspapers and magazines around the world.
Hill, E. K., Sandbo, S., Abramsohn, E., Makelarski, J., Wroblewski, K., Wenrich, E. R., McCoy, S., Temkin, S. M., Yamada, S. D. and Lindau, S. T. (2011), Assessing gynecologic and breast cancer survivors' sexual health care needs. Cancer, 117: 2643–2651. doi: 10.1002/cncr.25832 First published online 23 Dec. 2010. Accessed online 26 Sep. 2011 at: http://onlinelibrary.wiley.com/doi/10.1002/cncr.25832/abstract
University of Chicago Medical Center. Press Release, Few Women seek help for sexual issues after cancer treatment, but many want it. Dianna Douglas. 14 Feb. 2011. Eurekalert.com Accessed online 26 Sep. 2011 at: http://www.eurekalert.org/pub_releases/2011-02/uocm-fws021411.php/abstract
Psychooncology. Sexual Functioning in Young Adult Survivors of Childhood Cancer. Brad J. Zebrack et al. Aug. 2010. Vol. 19, Issue 8, pp.814-822. Accessed online 26 Sep. 2011 at:
McKee, A. L. and Schover, L. R. (2001), Sexuality rehabilitation. Cancer, 92: 1008–1012. doi: 10.1002/1097-0142(20010815)92:4+<1008::AID-CNCR1413>3.0.CO;2-2 Accessed online 26 Sep. 2011 at: http://www.canceronlinejournal.com/details/journalArticle/639749/Sexuality_rehabilitation.html
Reviewed September 27, 2011
by Michele Blacksberg RN
Edited by Jody Smith
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Before I was discharged from hospital after undergoing brachytherapy, I was given a set of dilators, and told to read the instructions. When I realised what they were for, I searched the internet and found that the walls of my vagina could have become fused through the radiotherapy. I found eventually, after examination by my gyne that there is extensive scarring there. But that's the least of my problems. When I recovered and asked my husband if he still found me attractive, he bluntly declared "That side of our marriage is over". I'm still reeling. I'm very tempted to go back to an old boy-friend who finds me incredibly attractive and is always suggesting getting together.October 5, 2011 - 7:16am