My story:
Watching my mother die after a long struggle with invasive metastatic breast cancer, my own healthy future weighed heavily on my mind even before finding a benign breast tumor shortly after turning 30. I had two young children and decided that having a bilateral mastectomy and reconstruction was the right option for me both physically and emotionally.
Among the many things that have changed since my preventative double mastectomy and reconstruction is what constitutes a rewarding sexual experience. After years of being frustrated and struggling to communicate what feels good for my new body, I’ve finally started talking with other women who’ve also undergone mastectomies about sex and pleasure. And guess what?!
I’m not alone.
When I started asking women if they were willing to have a frank discussion about physical intimacy, I was surprised by how many were happy to share their experiences and advice. It was a delightful reminder that women in this community are driven towards helping each other feel better and less isolated in our struggles.
Other stories:
The issues surrounding post-surgical and post-treatment intimacy pepper the entire physical and emotional landscape. Some of the physical outcomes are perhaps obvious or expected. But it’s one thing to understand that a side effect – like loss of sensation – is going to happen, and another thing to navigate dealing with it. Issues around sex were not something that any of my doctors brought up in our many pre-surgical discussions, nor something I was thinking about much at the time. Other women I spoke with had different experiences, some who were diagnosed with cancer asked their doctors about how maintenance treatment would affect their sex life, or how far after surgery it was safe to have sex. But all of the women who spoke with their doctors had to bring it up on their own and talking about it was easier for some than others.
As any woman who has gone through this knows, the physical ramifications of this experience are not limited to the breast area. While I still have numbness around the scars on my breasts, I also have a tingling sensation where my surgical drains were placed, and tender spots of scar tissue that make me wince even when I touch them. There are also muscle tightness, spasms, and more limited range of motion, which all take dedication and time to overcome (and not just in the bedroom). Afraid of killing the mood, making a partner feel bad, and bringing up a rather heavy subject during an act that should be intimate and playful, I often end up feeling frustrated. I am, however, dedicated to clearing this mental hurdle and trying to better communicate my needs.
My new “breastie” Mackenzie, who underwent a mastectomy with DIEP flap reconstruction over the past year, is one of the clearest communicators I know. Mackenzie is such a good communicator, in fact, that she’s shared her entire surgical process with the world via social media. It’s been a honor to be a voyeur on her journey as a young woman dealing with her hereditary risk head on. Her writing on everything from physical pain to her relationship with her husband to her struggles feeling at home in her new body are nothing short of humbling. Mackenzie’s entire process, which is common, took multiple surgeries. For her, an abdominal incision going three quarters of the way around her body was more of a disruption to her sex life than her reconstructed breasts. Her entire midsection was altered as part of her surgeries – she even has a new belly button! With her charming, seemingly light-hearted laugh, she recalled for me the events around having sex for the first time after surgery, which involved a whole lot of talking with her husband as they cautiously negotiated her healing body. Generally Mackenzie likes having her hips held tight during sex, but because of her incision that was temporarily not an option. They patiently approached finding what positions worked for her post-surgery body.
Many women who’ve undergone breast cancer treatment end up in menopause. Numerous women had things to say about their vaginal dryness and sensitivity in addition to their breasts (or lack thereof). Various products like coconut oil, plant-based intimacy enhancers, and a handful of new personal lubricants designed by women are easily available and helped some of these women have more comfortable and rewarding sex.
Frederica, an amazing woman I spoke with recently, just finished her second battle with cancer (thyroid followed by breast). She confessed to being nervous during her first sexual encounter after getting tissue expanders. She told me on our call that tissue expanders are “a hard thing to explain.” (Side note: they are hard to explain! I’ve literally paused during sex and drawn a diagram of my under-the-muscle implant reconstruction to explain why my implants move so visibly). But after some explanation, she reported men being generous and kind in their interpretation of her physical state. She laughed as she told me about how much her current partner still excitedly grabs hold of her totally numb reconstructed breasts.
Reconstructed breasts have scars, animate wholly unlike natural breasts, and Kimberly – one of the most sex positive women I spoke with – said that all but one partner she’s been with were not turned off by expanders or implants at all. In fact, she found that most of her partners enjoy touching them. Her only hesitant partner was fearful of potentially hurting her; even though she was well into healing, her scars made him uneasy. But with some reassurance and fun lingerie to set the mood, her partner’s worry subsided and things went, and continue to go, well.
Like Frederica, and many women who have no sensation at all around their breast area, Kimberly doesn’t mind her implants being touched or squeezed by her partners. Some other women I spoke with said their breast area is off limits; that being touched in a numb area- where they can feel pressure but not pleasure- just doesn’t feel good, or that their skin was too damaged and sensitive from radiation. One previvor I spoke with who didn’t like having her breasts touched, or even seen, is struggling with psychological and body image issues. While some women like Kimberly enjoy wearing lingerie, another woman I spoke with wears it so she doesn’t catch a glimpse of her nipple-less reconstructed breasts during sex, which turns her off. Whether or not, and how much, the breast area was involved in intimate play greatly varied, which often times lead to women discovering new erogenous zones or focusing more attention on areas like their neck, shoulders, fingers and so much more kissing!
Many of my discussions meandered from the role of breasts during sex towards these new focus areas and intimate activities. One woman told me about how cancer changed sex after years of marriage for the better. Her husband slowed down, was more gentle, dedicated more time to touching her entire body, and started asking her what felt good. They’d even started making out, she said, which they hadn’t done in years. Kimberly said that although she didn’t discover any new erogenous zones, she enjoys full body massages as part of foreplay more than she did before. She confessed that her medications make her body ache, so the massages are physically relaxing as well as arousing. More importantly, massage has made her slow down and feel more connected to her partner.
Another long-married woman confessed that it took almost a year after her final surgery before she even felt ready to think about having sex again. The emotional struggle of coming to terms with her potential mortality and then adjusting to her new body squashed her libido. When she was ready to get back to having sex with her husband, it was a little awkward – there was some crying, and some joking, including her touching his “moobs” (man boobs) in the way she wanted him to touch her “foobs” (fake boobs).
Your story:
The women I spoke with ranged from newly dating to having long-term relationships. And the vast majority felt accepted, cared for, and like they had understanding and supportive sexual partners. However, many were struggling to rediscover themselves as sexual beings. As with most things, often it’s our own thinking, about a situation, our bodies, or our expectations, that needs adjustment.
What I learned from these conversations is that sex is just like the rest of life. Sometimes it’s completely amazing, other times it’s weird, or unsatisfying, or confusing, or just meh. Upon reflection, what the success stories all have in common are good communication and a solid sense of humor.
It’s clear that while the stories varied– there are many more to tell. And that’s why WomanLab is here! So here we go: what’s your story? Tweet us at @WomanLab_, follow us on Facebook, and email us at info@womanlab.org.
Edited by Megan DePumpo