“Sexuality, which includes sexual activity, function, and sexual and gender identity, is an essential element of life for people with cancer…” So starts what we lovingly refer to (and in print, call) our “manifesto.” Defined as a written statement publicly declaring the views of the issuer , our manifesto is just that: WomanLab’s public statement declaring our (evidence-based) views on the impact of cancer, directly and indirectly, on women’s sexuality. We argue, citing real science (no #fakenews here) that women affected by cancer value their sexuality. We make the call to action for better evidence of the effectiveness of treatment options for women affected by cancer who are experiencing sexual function concerns. We implore healthcare providers caring for women with cancer to inform themselves of available resources and ask their patients about sex, and have since provided an evidence-based way to do so . In short, our manifesto states:
- Most women and girls with cancer have a cancer that directly affects the sexual organs: meaning, most women diagnosed with cancer get breast or gynecologic cancer, including uterine, colorectal, ovarian and cervical cancer. However, other cancer types, including brain and head and neck cancers, can also directly affect a woman’s sexuality.
- Cancer and cancer treatment can impair female sexuality: treatment options often include the removal or disruption of sexual organs (think surgically removing breasts, stopping a woman’s ovaries from producing estrogen). These treatments, including chemotherapy and radiation, can also have downstream effects on women’s sleep, body image and mental health. (In short, hitting the sheets isn’t what it used to be.)
- Women and girls with cancer value their sexuality. If you have made it to our website and have navigated to this blog, you already know this. We hear patients say, “I survived cancer, shouldn’t I just be happy to be alive?” to which we say yes, but sex is part of living! If your sexuality is important to you, it is important to us.
- Loss of sexual function has negative health consequences for women and girls with cancer and their partners: being unable to perform sexually can have physical and emotional consequences for both the woman and her partner. This can lead to hurt feelings, feelings of resentment and relationship strain.
- Patients want to preserve their sexuality (see #3) but rarely ask for help: Patients: doctors may not ask you about sex because they fear embarrassing you. Doctors: patients want and feel it is appropriate for you to ask about sex. When doctors don’t ask, it may signal to the patient that it isn’t an important or worthy topic of discussion. Alternatively, women affected by cancer who are experiencing sexual problems but have not been counseled by their doctor about it often feel alone or guilty, and that it is ‘all in my head.’ It is not, and you are not alone.
- Better evidence is needed to optimize sexual outcomes in women and girls with cancer: decades of research has shown us that having cancer and treating cancer can lead to sexual problems in women and provide information on the general scope of the problem. However, what we need now is further evidence of how these problems manifest (see what I did there?) in women with cancer, what can be done to prevent them, and how these problems can best be treated.
- Research is needed to establish effectiveness of treatments for female sexual problems in the context of cancer: While many options exist to treat sexual function concerns in women affected by cancer, rigorous testing is needed to establish how effective these treatments are, and for whom. Additionally, many women are treated without undergoing a physical examination that can rule out or identify a physical origin of the sexual function concern.
- Special effort should be made to include women and girls of sexual minority groups: Women in sexual minority groups may not have equitable access to women’s health care due to feelings of stigma. Just because you are not having or desire heteronormative sex does not mean your sexuality and sexual health do not matter.
- Sexuality is an essential component of female health. Simply stated, sex is as fundamental to our overall health as sleep and food.
Believe me when I say that this manifesto guides our work here at WomanLab. If you are a health care provider who cares for women with cancer, read this, this , and this to learn more about what you can do to elevate the care for women. This includes, but is not limited to asking questions, providing anticipatory guidance, normalizing your patient’s concerns, providing resources and building up your own expertise to provide specialized care. Your patients want you to ask and feel comfortable talking to you about sex. If you are so inclined, use this manifesto as a way to activate others around you to effect change and begin to bridge this major gap in care for women affected by cancer.
If you are a woman affected by cancer, or someone who loves and cares for a woman affected by cancer, please know that you are not alone if you are experiencing changes to your sexual function or your feelings about your sexuality. Your voice is powerful; here’s a list of questions you can use to start the conversation with your doctor. You also are powerful in effecting change – use this manifesto to advocate on behalf of your own care or for others. It is your voice, the voice of the patient, that is the ‘why’ behind WomanLab.
Edited by Megan DePumpo