A mastectomy is a surgery to remove all breast tissue from a breast in order to treat or prevent breast cancer. (A lumpectomy, a surgery to remove only the tumor from the breast, may be an option for some breast cancer patients.) We spoke with three anonymous women about their relationships with their bodies and their experiences of sex and love after mastectomy.
How old are you?
Woman A: Twenty-six.
Woman B: Thirty-three.
Woman C: Forty-two.
When and why did you decide to have a mastectomy?
Woman A: I was diagnosed with breast cancer at age 26 in October of 2015. I underwent chemo and was given the option to have a double mastectomy and reconstruction done all in one procedure. I made the decision because I am BRCA1-positive, meaning I have a genetic mutation that greatly heightens the chance of breast and ovarian cancer and reoccurrence. My family history of reoccurrence is so rich that the decision was easy.
Woman B: I have breast cancer and I had a single mastectomy last year because the tumor in one of my breasts had turned into painful necrotic tissue and was basically rotting inside of me. The procedure was palliative, not curative. Surgery is not a treatment when you have metastasis like I do. [Editor's note: Metastatic breast cancer, also called stage 4 or advanced breast cancer, has spread beyond the breast to other organs.]
Woman C: I was diagnosed with stage 3 breast cancer at age 31. It was a single mastectomy on my right side with a small lumpectomy on my left side.
How did you feel right before your mastectomy?
Woman A: I knew for about three months I was going to have surgery. The first 10 weeks, I was counting the days. I was excited the whole time. Well, also antsy, but excited to get it over with. The week before surgery, I realized I was slowly becoming more stressed and irritable. I wasn't scared of surgery: I was very sad my breasts I had always known were going to be gone. The sadness for my natural breasts was hard to cope with in the few days before surgery. I was also very intimidated by the idea of once again forming a new identity. From chemo, I had lost my hair. On top of that, I had quickly gained about 30 pounds during chemo from the steroids that are given during treatment and from stress-eating. My hair was finally starting to grow back; as a natural redhead or strawberry blonde, it was a shock when my new hair began to come back platinum blonde. It was tiring every few weeks or months to become familiar and comfortable with the change in the way I saw myself and the way others saw me.
Woman B: I was relieved that the painful thing was finally coming out of me.
Woman C: I was scared beyond belief but also much more desperate to have it cut out. Once I knew there was a deadly tumor spreading rapidly in my chest I wanted it out immediately. It's like having an alien land in your chest and refuse to leave. Of course, before the surgery, no one mentions how truly painful the recovery will be, as a mastectomy truly is an amputation, although I'm not sure a warning would have helped.
What was your relationship status at the time?
Woman A: I've been with my boyfriend, whom I live with, for the last three years. We had been together for about 2 1/2 years at the time of surgery.
Woman B: I was and am married.
Woman C: I had been seeing someone for over a year who was also involved with another woman. When I told him that I had cancer, he responded with, "Well, I can't be your boyfriend." At that moment in time I cut all ties with him, and relied on my family and friends for support instead. I mean, who needs that kind of drama when your life is distilled down to survival? Ironically, he came back around six weeks later claiming to be single and wanting to help during my chemo treatment. We've been together now for over 10 years. He saw things that no one should ever have to watch their partner go through. To this day, I'm not sure how he still finds me beautiful!
Did you decide to get reconstructive surgery? If so, did you also have nipple reconstruction? Why or why not?
Woman A: The mastectomy and reconstruction were all one procedure: They came off and were put back in immediately. Not getting nipple reconstruction isn't something I regret. I miss my nipples daily, but the idea of fake nipples made from my skin honestly was very weird for me. I have a problem with things that aren't real or natural. It makes me feel like a phony. I never wore a wig when I lost my hair [from chemo]. There's something odd to me about pretending to have a body part, which is funny, seeing as I have fake boobs. To me, I don't need heavy eyelashes or heavy eyebrows to be sexy, I don't need concealed skin. I do, however, need my curves that I am so used to. I do need to be looked at in a crowd and passed over, instead of getting lingering glances to check if I really am missing breasts. I got a lot of attention the past year, and the thought of having more attention because not having breasts was stressful. I just wanted to be normal...Nothing to see here. Just a girl and some boobs.
Also, recovering from surgery was stressful. It involved surgical bags, tubes coming from the surgery site connected to airtight bags that suck out access fluids. They were connected to me for a month. Nipple surgery would have been another procedure and at that point, another procedure felt like hell on earth.
Woman B: Yes to breast reconstruction and no to nipple reconstruction. I had a really bad reaction to the anesthesia. It was terrible—throwing up constantly is not fun when you've just been cut open and sewed back together again. I am too scared of the anesthesia to do something extra when neither I nor my husband cares if I have a "nipple." I have a little nubbin of skin my doctor created but no areola and it's all the same color.
Woman C: I definitely wanted reconstruction since only one side was removed. I felt really lopsided. However, I had so little extra skin after the mastectomy (my surgeon cut into my chest wall and couldn't get a clear margin) that I had a ridiculously painful tissue expander in my chest for a full year. My (first) reconstruction happened almost exactly one year after the mastectomy. My plastic surgeon wasn't a huge fan of nipple reconstruction and I agreed. It turned out to be a wise decision because the implant ended up being too large and had to be removed and replaced in a third chest surgery yet another year later. I've considered getting a tattoo over the years, but the implant will need to be updated in five years, so it would just look like a mess after a fourth surgery!
How did your relationship with your body change after the procedure?
Woman A: It was actual surprisingly easy to become accustomed to my new breasts. I think that's because I honestly expected the worst. I thought I was going to feel freakish and gross not having nipples, knowing mastectomy scars are across the whole breast. I'm definitely not saying I enjoy my new boobs. But it is livable. It's hard to imagine myself as being sexy. It actually nearly never happens...It really never leaves my head that a large part of my sex appeal as a woman was ruined. Luckily, my relationship helps me feel as secure as I do. I can't imagine dating again and having to tell someone new about the silicone, scars, and the jarring fact I have no nipples. It's pretty embarrassing to think about. I have no interest in one-night stands, obviously. But if I were ever single again, those would be out of the question because nothing would ruin the mood like explaining my cancer plight and reconstructive surgery.
Woman B: I love my body. I think my scars are sexy as hell. My other breast was lifted and looks amazing. I can wear clothes I was never able to wear before. I also went a cup size down (from a 36DD to a 36D) and everyone thinks I lost weight...I've always been pretty confident, but I didn't realize how much my chest was holding me back from doing things, like running. I also appreciate my body so much more for what it does for me. I'm less focused on how skinny I am, or how much I fit into a cookie-cutter idea of beauty, and much more on being grateful for everything I do have.
Woman C: It's hard to explain because my body changed multiple times over the three years of surgeries. I can admit that I felt horribly ugly when my hair started to grow in. I also felt chubbier than I'd like to be and simply didn't recognize myself in the mirror. It was a very disconcerting experience. For my third chest surgery, I also had liposuction at the same time. My surgeon understood how unattractive I felt and was kind enough to reduce her fees so I could tackle my hereditary thighs! That wasn't the best decision in the short term, because the recovery from liposuction was a nightmare. About eight months after that last surgery, I lost weight...Slowly I started looking like myself again on the outside, but I always felt like I was an unattractive person undercover. I don't think I've ever completely gotten over that feeling.
What was your partner's reaction to the mastectomy?
Woman A: Very supportive. He doesn't always understand my emotions, but that's not important because he knows how to deal with them even if they don't make sense...I asked for his opinions on many options, like silicone or saline, nipple reconstruction or not. He only ever told me to do what felt right for me.
Woman B: He loved it. He loves my perky boobs, and he loves my fake boob. He's so into it sometimes it bothers me (I mean, I had amazing real boobs) but then I realize I'm being ridiculous.
Woman C: He wasn't there during the mastectomy period prior to my chemotherapy so he didn't see it firsthand. That said, he had no information about how bad my cancer was or if I was going to live. Over a year later, my closest friends admitted that he had contacted them without my knowledge because he was so upset that I shut him out. He just wanted me to survive and was on board with anything that enabled that outcome. He held back tears the first time I showed him my un-bandaged chest, but not because he thought it was ugly, but rather because he saw the remains of what I had endured. He felt guilty for not showing up when he should have.
What effect did the mastectomy have on your relationship?
Woman A: I feel horrible for my boyfriend. I would never expect him to say it, but sometimes I want him to just tell me he wishes I still had my old boobs—not because I'm OK with hearing that, but because I want to know he has fully accepted the fact my breasts are no longer sexual. I constantly feel guilty that he is a 24-year-old man and if he decides to stay with me forever, he will give up nipples. We argue sometimes because I can't understand what he's actually feeling, so I ask questions and bother him about it. He constantly tells me my breasts are not a issue, but that's really hard for me to accept simply because I am having the hardest time putting myself in his shoes...I need a lot of reassurance that I am still sexy. Unfortunately, a couple times a day, I say the wrong thing trying to find the reassurance and it causes fights. We've been through a lot together.
Woman B: It was very positive for us. It was like a weight was literally lifted off our bodies. I used to hate it when my husband touched the diseased breast, and of course the pain sucked and made me feel incredibly unsexy.
Woman C: My partner is 20 years older than me, and he has always, always made sure to tell me that I'm stunning, and he doesn't notice or care about my missing breast. Having someone show me that much acceptance and tell me that I was beautiful no matter what (even when I was in my eighth month of chemo and looked like death warmed over!) was one of the greatest gifts he has ever given me. To this day, he tells me I'm beautiful when I feel my most unattractive. I cannot imagine what it would feel like to be with someone who had reservations about my body post-surgery. He always jokes that it just helps him focus on the breast that's left!
What effect did it have on your sex life?
Woman A: I have only had sex twice in the last three months since surgery. It's definitely the breasts that cause a lack of sex drive lately, but it's also not having hair and gaining all the weight, so it's hard to pinpoint what exactly is giving me anxiety about having sex. I can't imagine myself doing it. I can't imagine my boyfriend wanting to.
I have been a pretty sexual person all of my adult life. There's a disconnect between myself and sexuality. I'm hoping it doesn't take long to get over. Even when I imagine myself thinner and with my hair grown in from chemo, I still have a very hard time imagining that I will be enjoyable to have sex with.
Woman B: We did not take a break from sex. I think we may have even done it a little too early because I remember being in pain after the first time. I still had my chest expander in and we had to construct a little fort out of pillows to cradle my body. Sex has always been important to us—we had sex when I was on chemo, we have sex almost every day—it's how we connect to each other and how we relieve stress, and it's fun. My husband always thinks I'm sexy, and I realized when I was going through chemo that what really mattered was if I thought I was sexy. There were times during the chest expansion when I felt hideous, when I refused to take off my shirt. But my husband would just tell me how sexy my butt was and then compliment me until I felt sexy again, and then we would have sex. I have to say going into chemical menopause was much harder on our sex life than the surgery ever was.
Woman C: The mastectomy was quickly followed by eight months of rapid cycling chemotherapy so sex wasn't really at the forefront of my mind. I honestly don't have a sense of how much or little we had sex, but I can say that I spent most of my waking hours violently ill and hardly able to stand. It's hard to feel sexy when your boyfriend has seen you throwing up and having diarrhea at the same time! Gross but true!
What else have you learned since your mastectomy?
Woman A: I have definitely learned that I know how to be upset about something but also be at peace with it at the same time. I have learned my body is resilient. My doctor was very surprised at my healing process and told me I was very lucky. The words I would have rather heard are, "You are very healthy." I just spent a year ruining my body. It would have been nice to hear that it was running great again.
Whenever I get sad about having ugly, scarred boobs, I just remember these ones will not sag. They will not hurt from pregnancy. They make clothes fit more nicely. Also, I never wanted to breastfeed, so that's not an issue for me. In fact, it was kind of a relief, because I feel like if you tell women these days that you're not breastfeeding, they judge you harshly. Well, now I have an excuse!
Woman B: I wish I had gotten more pillows [before having sex]. I had a sex wedge that some people recommended, but pillows were so essential for us as we navigated the healing from surgery.
I think I've learned that it can always be worse—so appreciate what you have now. I also think I learned that feeling sexy in my own head is so much more important than anything else.
And not needing to wear a bra is awesome.
Woman C: For me, once the chemo was over, I slowly found my way back to having a libido. I was so insanely grateful that my doctors had finally stopped poisoning me within an inch of my life that everything felt like a gift—including sex. The biggest takeaway from my mastectomy was that it's not a minor surgery. It's a violent amputation and the only thing that dwarfed the pain from the first surgery was the chemo that followed. I've often joked that the mastectomy felt like a massage compared to the chemo I went through afterward.
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Hayley MacMillen covers sex, relationships, and health. She is passionate about tacos, coffee, and her IUD.
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