fbpx We Need to Talk About the Sexual Side Effects of Breast Cancer
A doctor looks at a screen that shows a woman's mammogram who is standing in the background.
A doctor looks at a screen that shows a woman's mammogram who is standing in the background.

We Need to Talk About the Sexual Side Effects of Breast Cancer

If you're struggling with your libido following diagnosis or treatment, you're not alone.
Izzie Price
Written by

Izzie Price

Vicky Saynor first felt a lump in her breast in October 2018 while she was at an airport. She and her husband, who live in Hertfordshire, England, were about to go on their honeymoon. She described the trip as "10 days in India with huge anxiety," adding that she did not enjoy any of it.

The 46-year-old went to her doctor the morning she and her husband landed back in England. After one referral, one mammogram, three scans, one emergency biopsy and a two-week wait for results, Saynor was diagnosed with breast cancer.

She later found out she had the often highly aggressive triple-negative breast cancer (TNBC). She was put on six rounds of chemotherapy and then three rounds of radiotherapy, which concluded in August 2019. TNBC doesn't have receptors for estrogen or progesterone and doesn't make much, if any, of the protein HER2, so hormonal cancer treatment is not effective.

The process was all immeasurably hard, but one particular side effect Saynor struggled with—and still struggles with—was sexual.

"From the moment of finding my lump to our second attempt at a honeymoon [in] September 2019, anything sexual stopped," Saynor said. "Neither of us felt remotely sexual, and cancer dominated every waking moment. We attempted sex for the first time in September 2019, but it was awkward and uncomfortable.

"At that time, our focus was on me and getting through treatment, so it wasn't something that bothered us, but as time has gone on—now four years after [my] diagnosis—our sex life is still virtually nonexistent as I've had to navigate all sorts of horrid side effects of treatment and now medically induced menopause," she said.

When your body betrays you

Sexual side effects, both during and after breast cancer treatment, are common, said Jessica Pettigrew, M.S.N., C.N.M., co-director of the Women's Sexual Health Consultation Service at the University of Colorado Hospital.

"Women experience many changes in sexual function related to breast cancer treatment," Pettigrew said. "For many women, nipples are an erogenous zone and loss of this tissue can be a surprising challenge. Many women struggle with the surgical changes of their breasts and may feel a sense of betrayal from their body. In this sense, it can be hard to want to be sexually active and feel pleasure from a body that some women feel has betrayed them or caused physical or emotional pain."

Chemical menopause

Most breast cancers are hormonally driven—Saynor's is an exception—so many women face years of hormone-suppressing medication that causes chemical menopause, Pettigrew explained.

Chemical menopause results in the same symptoms as natural menopause, including:

The emotional toll

There are emotional side effects as well.

"Some women feel less desirable or enjoy sex less," explained Sarah Yamaguchi, M.D., an OB-GYN in Los Angeles.

Mental strain can often be a factor, added Daisy Ayim, M.D., a triple-board-certified physician in Houston.

"Knowledge of the breast cancer may affect your desire to want intimacy given the shock of such [a] diagnosis," Ayim said. "This may cause emotional exhaustion, which puts a strain on intimate relationships. Similarly, your partner may feel unsure or fearful on how to provide support."

A lack of support

Dealing with the mental and physical sexual side effects of breast cancer can be immensely difficult. This circumstance isn't helped by the considerable embarrassment many women may feel when bringing up these side effects with a healthcare professional.

"Some women may be embarrassed or ashamed to mention sexual side effects due to cultural reasons [or a] lack of trust or rapport with a physician," Ayim said.

"In general, women don't talk to their physicians about their sexual health," Yamaguchi added. "Also, they may not want to bring up such a topic since sexual health is often not considered by people as a 'health' issue."

When a patient does bring up her sexual side effects, doctors often don't have the answers or don't know how to provide the necessary support. Saynor found this to be the case for her.

"With zero support given to us after active treatment ended, other than my GP [general practitioner] prescribing water-based lubricant, the mental scars of what [my husband and I] had both been through were hard to shake," Saynor said.

Treatment ends, but side effects remain

The side effects of breast cancer don't just stop once treatment has concluded. Saynor stressed that this point needs greater attention; her sexual side effects are still very present.

"I am hugely bothered by it; my husband less so," she said. "We had an active sex life to the point of finding my lump, and from that day on, everything changed. My husband and I talk regularly about it, as I feel guilty, but I honestly feel numb from the neck down. My husband is just grateful I'm still here, he says. I feel very lucky that he puts no pressure on me at all, but I feel very, very guilty."

Navigating sexual side effects

The good news is treatment options are available for sexual side effects of breast cancer. Talking to a trusted healthcare professional with whom you feel comfortable is the first step.

Make a list

Before an appointment to discuss your sexual side effects, Ayim recommended writing down all your questions. If you don't feel comfortable reading the list aloud, hand it to your physician so they can read it. After the physician has read your concerns, they can ask for clarification on any points and you can come up with a treatment plan together.

Talk to a sexual health specialist

"Sexual health is important, and there are interventions that can help," Pettigrew said. "If your oncologist does not have expertise in this, request a referral to a sexual health specialist."

Take care of your mental health

Pettigrew also recommended speaking to a mental health professional.

"I use a biopsychosocial approach in treating women with breast cancer who have sexual health concerns," she said.

"I am fortunate to have a wonderful psychologist who works alongside me," Pettigrew continued. "Together, we assess the individual's mental space. Sometimes women need time and space to process the whirlwind of changes that accompany a cancer diagnosis. This can result in changes in the relationship dynamics that can be addressed with a mental health professional."

"Counseling is the first line with a trusted gynecologist or nonphysician sexual health counselor," Ayim added.

In the bedroom

"Once the individual has reoriented themselves and processed their cancer diagnosis and treatment, there are many interventions we can use to help," Pettigrew said.

Pettigrew and Yamaguchi advised trying the following:

"The restoring of your sexual wellness is important," Ayim stated. "Do not be ashamed of this aspect of your journey."

Finding community

Saynor stressed that anyone who is experiencing sexual side effects of breast cancer doesn't need to deal with them alone.

"Society expects us to move on and be brave…after active treatment," she said. "But I think the hardest part is coming to terms with what's happened to you: how your body may have changed, the side effects of the treatment and drugs.

"Personally, I have focused on getting my body back to fitness and health after treatment, and although my sex drive hasn't come back, I feel that it may when I'm not fully menopausal, as I am now," Saynor continued. "Everyone is different, and my story isn't necessarily your story…but if you are struggling, you're not alone."