Will2Love: A New Resource to Improve Women’s Sex Lives After Breast Cancer

Leslie R. Schover, PhD is a clinical psychologist who has devoted much of her career to developing programs to prevent or overcome cancer-related problems with sexuality and fertility. She is the founder of Will2Love, which focuses exclusively on sexual health and fertility and offers free content to the cancer community including a blog, an extensive resource lists, moderated forums, and monthly webinars.

Here, Dr. Schover writes about the sexual struggles many women face after breast cancer, and gives advice on overcoming those struggles.

Most women with breast cancer notice negative changes in their sex lives. By some estimates, over 80 percent of women treated for breast cancer end up with sexual problems. Unfortunately, at least half of women do not recall being warned about sexual problems by their oncology team. Most women do not get effective professional help for their problems, even years after completing active breast cancer treatment.

A number of cancer treatments interfere with the physical systems needed for a healthy sexual response.

Although breast reconstruction can do a great job of restoring the appearance of the breast and nipple, even the most advanced techniques of surgery cannot preserve the special sexual sensations caused by caressing of the breast and nipple. Most women have little skin sensation on a reconstructed breast, even after months of healing. Many say they wish the surgeon had discussed breast sensation more, rather than just focusing on “cosmetic results.” In a study I did years ago at the Cleveland Clinic, women who had partial mastectomy in the past were more likely than women who had mastectomy and breast reconstruction to include breast caressing in their sex lives, and to report pleasure from breast caressing.

Women who have chemotherapy are more likely to have loss of desire for sex, along with vaginal dryness and pain during sex, especially women aged 35 to 50 who usually end up with a sudden, permanent menopause because chemotherapy damages their ovaries.

When the ovaries stop producing the hormone estrogen, less blood flows into the vaginal walls and vulva when a woman becomes sexually excited. Her vagina loses some of its ability to stretch out during sexual arousal. The vaginal lining does not produce the clear, slippery fluid that makes the vagina moist and ready for sexual activity that includes penetration with a penis, finger, or sex toy. Similar changes (sometimes even more severe) take place when women are put on aromatase inhibitors, which stop any tissues of the body (such as fat cells) from making estrogen once the ovaries have shut down after menopause. Pain plays a major role in decreasing women’s desire for sex. It is hard to look forward to lovemaking if you know it will be painful! Many women think that if they refuse to take the risk of using low-dose vaginal estrogen, they are doomed to severe dryness and pain with any type of sexual caressing on the vulva or penetration. However, our recent trial with women just starting aromatase inhibitors suggests that many women were able to stay sexually active with only minor discomfort if they used a nonhormonal vaginal moisturizer frequently at bedtime, as well as using lubricants correctly during sex, and perhaps stretching the vagina with a dilator or sexual activity.

A lot of breast cancer survivors wonder if it is worthwhile to pay several thousand dollars out-of-pocket for new “vaginal rejuvenation” treatments using lasers or heat to destroy the vaginal lining. Supposedly these treatments promote new growth of small blood vessels and stretchy tissue in the vaginal walls. Insurance is not currently covering these treatments — and for a reason. The few research studies on results do not compare “vaginal rejuvenation” with any equivalent type of procedure. Women only report results over a few months. Some women say they have improved vaginal stretch and lubrication, but without estrogen available, any new development of tissue would not be expected to last. The equipment needed to provide heat or laser treatments is expensive, so clinics need to convince women to have repeated procedures. The jury may still be out, but it makes sense to me to start with more conservative options, including nonhormonal vaginal moisturizers and lubricants, use of dilators of increasing size to stretch the tissue and to teach pelvic floor muscle control. For some women, it may be worthwhile to use low-dose vaginal estrogen, since no study has yet found that it increases the rate of breast cancer returning.

Our culture tends to focus on magical “cures,” such as “female Viagra,” fancy, expensive “smart vibrators,” etc. I am all for more research and development of treatments for women’s sexual problems, but the benefits demonstrated so far are disappointing.

Women’s sex lives depend a lot on our emotions, attraction to a partner, and erotic thoughts. In one of the earlier, large surveys of women about sex after breast cancer, those with the best sex lives were women who had recently found a new sexual partner. Exploring sex with someone new is obviously exciting in itself — and add the validation of having someone find you sexy and attractive even though you have gone through breast cancer treatment!

Of course I am not advocating abandoning a long-term relationship, but sex can get better with some of the “work” that often goes into developing a new sexual relationship. This can include

• making a renewed effort to open up sexual communication
• sharing sensual touching and kissing without demands for “performance”
• trying new types of sexual touching
• making the setting for sex more special
• working on feeling sexy and attractive whether or not your appearance has changed

Advocacy organizations like Living Beyond Breast Cancer have played a huge role in promoting sexual health after breast cancer. They have many helpful resources, including the Guide to Understanding Intimacy and Sexuality, talks and workshops at LBBC annual conferencess, and online information on their website.

Over the past 3 years, I have taken the online, self-help tools I created and tested in my years on the faculty at the University of Texas MD Anderson Cancer Center, and incorporated them into a unique, new digital health company, Will2Love. Will2Love focuses exclusively on sexual health and fertility.

To celebrate our launch, we have promoted a public health campaign this summer, Bring It Up! Cancer, Sex and Fertility. The Bring It Up! website offers separate 3-step action plans for patients/survivors and for oncology health professionals. These plans promote talking about sex as part of cancer care. The plans also point out a pathway to managing sexual problems, rather than just talking about them and then not finding solutions.

Will2Love.com offers free content to the cancer community including a blog, an extensive resource list, moderated forums, and monthly webinars. Our webinar schedule can be found on the website, along with recordings of past webinars. We also offer an in-depth, interactive self-help program for women’s cancer-related sexual and fertility issues for a monthly subscription fee. One month is normally $40, but 3-month or 6-month subscriptions (we recommend 6 months as optimal) are discounted by 5 percent and 10 percent. The self-help program includes a personalized goal-setting feature that helps a woman define her top priorities and find step-by-step guidance to self-help strategies and medical options. The program also includes video interviews with real survivors and vignettes with actors that show common dilemmas and good communication skills.

By the end of September, Will2Love will also offer telehealth video-counseling by patient advocates and by expert psychologists. In September we will also be recruiting cancer survivors for a clinical trial, the Find Your PATHS study, in collaboration with the American Cancer Society. Participants will be able to use our self-help programs without any charge if they fill out some brief questionnaires and allow us to track their use of the websites.

Will2Love’s next webinar, The Sometimes Off the Beaten Path to Parenthood after Cancer, is this Wednesday, August 16 at 9 p.m. Eastern time.