Today, we’re talking with Leslie Schover, the founder of a company called Will2Love. Will2Love focuses on “empowering cancer survivors and their loved ones, with expert guidance on the journey to sexual wellness and parenthood.” Leslie is a clinical psychologist who has been recognized internationally as an expert on sexual problems and infertility related to cancer treatment and other chronic illnesses. I had the pleasure of meeting her at Medicine X this year.
What is Will2Love and how did it get started?
Will2Love is a digital health startup company that offers online help to men and women struggling with cancer-related sexuality issues. Free content at Will2Love.com includes blog posts, moderated online forums, webinars (to start soon), and an extensive section of resource links. Starting in January 2017, we will also be offering online self-help programs for men and women for a modest monthly subscription fee. We will also have patient advocates providing coaching by videoconference and are working on building a network of expert psychologists. Currently, the law limits psychologists to counseling patients only in a state where the psychologist is licensed.
Will2Love grew out of my frustration that over a 35-plus year career at MD Anderson Cancer Center and the Cleveland Clinic. I still saw so many patients not get the timely, accurate help they needed with sex and fertility. We had three small business grants from the National Cancer Institute to develop our self-help programs, so we actually did clinical trials that demonstrated they helped people improve knowledge, distress, and sexual function/satisfaction.
What are some of the self-worth or self-esteem issues that many breast cancer patients may experience?
Breast cancer patients sometimes feel like “damaged goods” if they are having trouble enjoying sex because of pain and loss of desire. Women are socialized to be caregivers and often have difficulty when they, themselves, need help. Changes in appearance are also common, but I think “body image” issues are not as devastating as some of the other physical damage directly to sexual function, memory and attention, long-term fatigue, and fear of recurrence.
We know that each person is different, meaning their experiences of illness are infinitely more different than we can imagine. With Will2Love, do you see differences in how people of different sexual orientations and gender identities experience their breast cancer?
LGBTQ patients very commonly report experiences with rude and homophobic health professionals. Many simply conceal their sexual orientation to avoid the hassle, which can compromise trust and good medical care. We need a lot more research on how sexual orientation and identity affect coping with cancer. Some small studies in the lesbian community suggest few differences in sexual outcomes from groups of heterosexual women. Many lesbian breast cancer survivors believe their partners to be more empathetic and supportive than a man would be. This week there was an excellent piece in the New York Times about a trans man who was diagnosed with breast cancer at 27 and is struggling with concerns about continuing testosterone therapy and whether to have an oophorectomy. His account highlights how little we know.
Contrary to what many believe, men and other penis-havers do get breast cancer. Do they face special issues that those with vaginas do not?
The main complaint unique to men with breast cancer is feeling there is not a special place for them, and having trouble fitting into clinics designed for women with breast cancer. There are some special advocacy groups for male breast cancer and, with the internet, it is easier to find information and support. It also appears that a large minority of men who take tamoxifen as part of their treatment experience problems with their sexual function.
What do you see as the biggest issue related to sex and quality of life for breast cancer patients in particular?
I think the biggest sexuality issue is genitourinary atrophy—better known as vaginal shrinkage and dryness, and consequently, pain during sexual caressing and intercourse. For younger women, these symptoms come when chemotherapy damages the ovaries causing menopause at a much younger age than normal. Some women resume periods for a while, and may also have fewer symptoms, but will still be at risk for an early menopause before the average age of 51. Women at high genetic risk who have prophylactic removal of their ovaries also experience these problems unless they take replacement estrogen (which may be a safe option until age 50 if they also have had both breasts removed). Women who have pelvic radiation therapy (for example if they also had ovarian cancer) have even more severe problems with vaginal size, dryness, and pain. Unfortunately, taking aromatase inhibitors causes all of these problems, often tipping a postmenopausal woman who was able to enjoy sex without pain (maybe using a little bit of lubricant) into a state of total inability to have intercourse. Many women who notice a loss of desire for sex are reacting to the fact that having sex hurts!
What are some of your favorite resources for breast cancer patients?
Will2Love! Honestly, I created Will2Love because at least for sexuality, I thought existing internet and book resources were really inadequate—superficial, repetitive, limited just to personal stories rather than giving practical advice, and often wrong! I also think our programs do a better job of addressing the emotional aspects of infertility than anything else out there. However, I think that support groups and advocacy organizations are extremely helpful to women. For breast cancer, there are many specialty groups – for example for women diagnosed during pregnancy, women considering fertility preservation, women of color, gay/bisexual women, men with breast cancer, etc. It can be very helpful to discuss questions and concerns with someone similar to you. Large groups like
Large groups like breastcancer.com, Living Beyond Breast Cancer, and the American Cancer Society provide lots of high-quality, up-to-date information on all aspects of breast cancer. The Cancer Support Community and Cancer Care are two of my favorites because they provide free or low-cost counseling and support for cancer patients, online, by phone, or in person.
What are some steps that breast cancer patients and survivors can take in order to take back their sex lives?
First of all, start on your own, without the anxiety of worrying about pleasing a partner. Find ways to view your body positively, and to get pleasurable feelings. If you do not have religious objections, try self-pleasuring with hands or vibrator, and read some erotic stories. Once you see that you can have sexual feelings, teach a partner how to give you pleasure, despite the changes in your body. Try not to buy into our cultural expectations of sex as a performance, with “foreplay” as the first act and “intercourse” as the finale. Instead, work on sex as sharing of physical pleasure, emotional intimacy, and erotic fantasy. If you are not in a relationship, work up to meeting new people. Try online flirting or role-play with a friend on how you would tell someone new about your cancer history. If you have a major problem with sexual pain or low desire, find a gynecologist or sex therapist (or both) who can suggest
Once you see that you can have sexual feelings, teach a partner how to give you pleasure, despite the changes in your body. Try not to buy into our cultural expectations of sex as a performance, with “foreplay” as the first act and “intercourse” as the finale. Instead, work on sex as sharing of physical pleasure, emotional intimacy, and erotic fantasy. If you are not in a relationship, work up to meeting new people. Try online flirting or role-play with a friend on how you would tell someone new about your cancer history. If you have a major problem with sexual pain or low desire, find a gynecologist or sex therapist (or both) who can suggest
If you have a major problem with sexual pain or low desire, find a gynecologist or sex therapist (or both) who can suggest ways to stretch and lubricate your vagina and prevent vulvar irritation. Start with nonhormonal options, but if they do not help enough, consider the risks and benefits of using medications like ospemifene or low-dose forms of vaginal estrogen. Keep your oncologist in the loop, but do not be surprised if your gynecologist is less concerned than your oncologists about the risks of any type of estrogen treatment.
Make sure to check out Will2Love for more information on the amazing work they’re doing for all types of cancer.