Débora Lindley López wasn’t prepared for how her sexuality would slip away during her breast cancer treatment.
Lindley López was 28 when she was diagnosed with Stage 3 breast cancer. Within a month, she was experiencing medically induced menopause, a common response to chemotherapy treatment that can be either temporary or permanent.
Younger women being treated for breast cancer can have menopausal symptoms ― hot flashes, night sweats, vaginal dryness ― that are initially more intense than those of a natural menopause.
And when a partial or total mastectomy is necessary for treatment, it can lead to a loss, or at least a dulling of sensation in the breasts, a major erogenous zone for many women.
“Losing my breasts was incredibly demoralising, seeing myself with loose, sewed-up skin, no nipples, and tubes hanging out of me was desexualising to the core,” said Lindley López, who is now 31 and the manager of community support at the Young Survival Coalition.
As her libido plummeted, the married mom of one said she remembers wondering: What if I never desire sex again? What if I can no longer climax? What if I can never see myself as a sexual being again? What if that side of me is forever lost?
“The erotic zones that used to edge me into a place of intimacy were either completely gone, or they were numb from being poked and prodded,” the breast cancer survivor said. “My go-to foreplay areas were now a place of trauma and pain.”
When her partner would touch her scars, and remind her of how beautiful they were, it didn’t calm her nerves, it just brought on more shame and anxiety, she told HuffPost.
“I felt as though I didn’t deserve to feel sexy or beautiful,” she added. “The deep sense of loss, embarrassment and grief for what used to be, haunted me during those moments of intimacy.”
Crossing that mental barrier was one of the toughest hurdles Lindley López had to overcome in her cancer battle: “Even helping my partner realise I didn’t need him to be my caregiver anymore became a yearlong process of readjusting,” she said.
The readjustment Lindley López describes is common for breast cancer patients. Up to 75% of women treated for breast cancer report sexual problems at some point in their cancer journey.
“I often think of physical, sexual concerns patients face as being in two categories: some more obvious and others less so,” said Sharon Bober, a psychologist and director of the Dana-Farber Cancer Institute’s sexual health program.
When this topic is discussed, there’s a heightened focus on the visual: concerns about how reconstructed breasts will look outside of clothes, for instance, or how a sexual partner will react to a reconstructed nipple and areola.
But the physical changes you can’t see can be just as distressing for patients, Bober said: loss of sexual sensation in the breast, even with reconstruction, for instance, or ongoing tenderness or issues with lymphedema that cause discomfort.
“Certainly touch and breast play with a partner is very different when people do not have sensation — it can be complicated figuring out what that means for sexual activity,” she said.
It’s also common for women to struggle with significant vaginal dryness and pelvic floor dysfunction after breast cancer due to oestrogen loss.
“Because of the genito-urinary symptoms of menopause (GSM), either solo sex or sex with a partner can quickly become uncomfortable or even painful,” Bober said.
Though research and open discussions of sexual health during and after breast cancer treatment is on the rise ― Bober said that since 2018, the American Society of Clinical Oncology has recommended doctors initiate a discussion with every adult cancer patient, whether female or male, about the potential effects of cancer and cancer treatment on sex ― many patients are still kept in the dark about what to expect.
“Unfortunately, because many women still don’t hear about sexual health during cancer treatment, they may not realise the need to be proactive when it comes to managing treatment-related GSM, for instance,” Bober said.
Below, Bober and other experts share the sex advice they think every breast cancer patient needs to hear with their diagnosis.
Know that it’s normal to not feel sexual.
If you’re struggling to feel sexual again, know that that’s entirely normal. When Lindley López was diagnosed with breast cancer, she said it felt like all that she used to consider sexual was ripped out of her.
“Mentally I was a ‘cancer patient,’ never a victim, but I still saw myself as a young, sick mom that needed to survive,” she said. “It wasn’t a switch I could flip from having to fight for my life to being a sexy woman that craves intimacy and that big O.”
Start by exploring your own body.
Before diving back into sex, look at yourself in the mirror with and without clothes so you can start to get used to the physical changes, said Alexandria Callahan, a sexology behavioural health supervisor and sexual wellness liaison at City of Hope Chicago, a comprehensive cancer treatment hospital located in Zion, Illinois.
“Say positive affirmations that recognise your journey and the beauty of your body following your treatment,” she said. “Parts of your body may have been removed or changed. Allow yourself permission to grieve this.”
Once you’re more comfortable with that, you may want to explore things that feel pleasurable to you now.
“Get to know yourself again as foundational — before you communicate with your partner about what you like or don’t like in terms of intimacy and sexuality,” she said.
Lubricants ― and even longer-acting vaginal moisturisers ― are your friend.
K-Y Jelly can’t do it all. Although most people know about the benefits of using lube during sex, a topical lubricant is not always adequate after breast cancer treatment.
“That’s especially if a woman is on long-term hormonal treatment which keeps ovarian function turned off and depletes systemic oestrogen in order to reduce the risk of cancer recurrence,” Bober said.
To keep genital tissue healthy and well, many breast cancer survivors remain on long-term hormonal therapies after active treatment is over.
“Strategies such as using longer-acting vaginal moisturisers and learning how to relax the pelvic floor muscles can be vitally important,” she said.
Understand that it might take your partner some time to adjust.
For partners of patients, it can be complicated to balance being a caregiver with being a romantic partner.
“Partners often get very little support, and it’s not always easy to create a new chapter after breast cancer without some guidance,” Bober said. “Guidance might mean asking your partner to take some time to talk, or reaching out to an online support group for caregivers, or talking with a counsellor or sexual wellness specialist.”
Partners may hesitate to touch someone going through cancer treatment, out of fear of hurting them or causing pain, said Cynthia Ingram, a certified sexuality counsellor at City of Hope Chicago.
To address this, Ingram recommends patients communicate their comfort levels early and often: what you’re OK with when it comes to touch, and ways to rekindle intimacy in your relationship that don’t involve full-on sex, if you’re not ready for that yet.
“The desire for intimacy remains, so our work is more in exploring ways for the couple to reconnect on an intimate level after the changes have occurred,” Ingram said.
“It’s OK to take sex off the table, and simply explore your partner’s body and allow your partner to explore your body,” she added. “This is a great way to start connecting on a deeper and more intimate level while relearning each other’s preferences, which naturally change as we get older.”
Be patient and don’t give up.
Reclaiming your sexuality isn’t going to happen overnight. Take the journey to sexual healing one step at a time. For Lindley López, the first step was getting her nipples tattooed.
“Being able to see more than just my scars gave me the push I needed to fight for my right to sexual healing,” she said, adding that consulting with a sex therapist also helped.
Taking the time to relearn her body and mind, with and without her partner, helped Lindley López find alternative erogenous zones on her body: “Not to replace the ones I had lost, but new ones that give me hope for new beginnings,” she said.
Her biggest takeaway for fellow breast cancer patients is just to be patient with yourself when it comes to sex.
“We are used to seeing quick results and when that doesn’t happen, we tend to get discouraged and stop fighting for what is rightfully ours,” she said. “It took a lot of hardship to get us to this empty, painful place, and it took a lot to get us out of it, but you can do it. I know you can because I did.”