Sexual injustice is not only something women encounter in the workplace. It happens in the doctor’s office, too. What we have been recently hearing about – threats or acts of sexual violence against women and girls, usually by a man in a position of power – are acts of commission, like grabbing a woman’s genitals. In medicine, the injustice is far more likely to come from an act of omission – things we should, but don’t tell women about the known impact of their medical condition or treatment on their sexual function. Women with cancer are especially prone to this kind of silent transgression.
The most common survivable cancers are found in a woman’s sexual organs, including the breasts and uterus. Millions of U.S. women have had one or both breasts removed to treat or prevent breast cancer.
This year about 10,000 women will have a new diagnosis of vulvar or vaginal cancer and several hundred will have all or some of their clitoris removed.
And while a growing number can expect to survive, women are having their sex organs removed for cancer without anyone talking to them about the impact on their sexual lives.
This is wrong.
One of my patients put it this way: “If somebody were to chop off my husband’s penis, they would probably talk to him first about sex.”
It is the physician’s ethical duty, in the course of recommending removal or altering our sexual organs, to inform their patient of the implications for their future sexual function. Repeated studies show that the vast majority want sex addressed, even when dealing with cancer. Although 37-75% of women with cancer will have sexual function problems, few get the help we need. In spite of the evidence and the ethics, medicine is failing women in this domain.
Doctors know that functioning body parts need to do more than just look good in a sweater. About 100,000 women annually undergo a mastectomy in the US. This number is rising as women with elevated risk for cancer choose to remove their breasts.
Society has invested and science has delivered on techniques to beautifully restore breast form but has done very little to preserve breast function. My patients who come for sexual problems after breast cancer say “my breasts look great to everyone else, but they are dead to me,” “they are cold and numb,” “my nipples were really important for having an orgasm,” and “why didn’t anyone tell me my breasts would never feel sexual pleasure again?”
Doctors like to have answers—and cures.
It’s possible that doctors caring for women with cancer avoid the conversation about sexual outcomes because evidence-based solutions are lacking.
We need more proven options to preserve and recover sexual function for women with cancer, but we can’t wait until all science is done before we offer women what we do know: if you have your breasts removed and reconstructed your nipples will no longer become erect. If you have your uterus removed, you can still expect good sexual function – it might even be better than before. Removing your ovaries will cause menopause and, even if you remove your ovaries after you’ve been through menopause, you might notice a decrease in your sex drive and vaginal lubrication. If you have your clitoris removed, experiencing orgasm may require a different kind of stimulation.
Doctors have to say these things out loud not to hurt women but because if we are silent on the subject women feel their loss of sexual function is their own failure (“it must be in my head, I’m not trying hard enough”), they may feel defective and their partners feel hurt or rejected. If doctors give all the facts and let women know that they might experience sexual function difficulties after cancer treatment it goes a long way to letting women know that these problems are not their fault and there is help.
A patient said to me “It seems unbelievable to me that a doctor would remove a patient’s sexual organs and never talk to her about sex.”
Most people with cancer want a doctor who can get rid of cancer as quickly as possible. We don’t expect cancer doctors or nurses to be experts on female sexual problems. But with a minor change in workflow, one that simply adds the statement “and you may experience some difficulty with sexual function” to the routine pre-treatment counseling, we end the hurtful silence. These words signal to women that if we have a problem or concern about sex, it’s legit to ask the doctor for help.
Important cancer organizations recommend that doctors counsel women about sexual function problems that can come with cancer. The Reverend Dr. Martin Luther King, Jr. told us “justice too long delayed is justice denied.”
Before you decide on your cancer treatment, get the facts. Ask your doctor: “What will this treatment mean for my sexual function?” The more women ask the more likely doctors will be prepared to respond.
BYLINE: Stacy Tessler Lindau, MD, MAPP is a physician, scientist and Professor in the Departments of Obstetrics and Gynecology & Geriatrics and Palliative Medicine at the University of Chicago and is an Aspen Institute Health Innovators Fellow. She is the founder of WomanLab and a past founding Chair of the international Scientific Network on Female Sexual Health and Cancer.