What breast cancer and menopause at 30 have taught me about sex and body image

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Straight / Female / 28–32 / North America / Long-Term Relationship

Welcome to another cambyo story. Subscribe to our newsletter so you can continue on your journey of intimacy development. This is our friends story about getting breast cancer at 30 and how that has affected her thoughts on sex and body image.

My journey of understanding sex and sexuality has been a slowly unfolding one. Like many people, I’ve hit some bumps along the way: just when you think you’ve got it figured out, life — and sex — has got a way of changing.

I spent most of my teens terrified of sex, convinced that sex was all men wanted and that if I wasn’t yet ready for it, then I couldn’t date. A friend at summer camp told me that after you dated for six months, you had to have sex, so I broke up with every boyfriend around 5 1/2 months.

I spent much of my early 20’s figuring sex out and learning what I wanted. I realized that receiving pleasure and knowing what I needed was just as sexy to my partners as knowing and delivering what gave them pleasure. I learned to love sex.

I spent my mid-20’s celebrating sex and open relationships. I learned to love the many surprises that present themselves when getting to know someone in bed — the rough guys who are such gentle lovers and my partner’s faces when they realize that the apparently-demure me knows exactly what I want. I love the pleasure of orgasm, of course, and watching a partner enjoy that, too. And yes, I even love the awkward moments.

I spent my late 20s learning about monogamy and sexual commitment. I met an amazing guy soon before my 27th birthday, and we had both incredible sex and an incredible relationship.

I planned to spend my 30s with him enjoying sex together.

Then, at 30 years old, I was diagnosed with breast cancer. Pulling the rug out from under my professional life. My personal life. And yes, my sex life.

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I found a lump in my left breast, but for a couple weeks I pretended it was just a knot in my pecs from newly increased workouts. When it didn’t go away, I went to my doctor who assured me it was just a cyst, but sent me for a mammogram anyway. I trusted her. I was so sure it was nothing that I didn’t bring anyone with me to the appointment. I texted a client and my partner, complaining about how long they make you wait at the doctor’s office. A few minutes later, the radiologist told me he was pretty sure it was cancer. I convinced myself he was wrong, that we’d only know after a biopsy. I went back to work and tried to keep living my life.

I didn’t tell very many people about the possibility, but a friend who was a resident in OB/GYN oncology called me so I gave her the news. She urged me to ask every doctor about fertility and make sure I went through egg freezing before starting chemo. Most chemotherapy treatments pose a risk of sending women into early-onset menopause and/or significantly or entirely reducing a woman’s fertility. So, amidst doctors appointments about surgery and chemo, more tests, and more biopsies, I managed to get an appointment at the best fertility clinic in my area. I wasn’t certain, and still am not sure, if I really want kids, but I definitely didn’t want my chance to have biological children robbed by a disease or its treatment.

My partner and I had been together for just over three years at the time of the diagnosis, one year of which had been long-distance. We had moved in together six months before my diagnosis, and while we had talked very seriously about a life together, we hadn’t yet talked seriously about kids.

Suddenly, we had to answer dozens of questions we had only spoken about in the vaguest of terms with a doctor we just met. How many kids did we want to have? How important was having my own children to me? How sure were we about having kids together? Did we want to freeze eggs or embryos? Given that the eggs I would get during this treatment could be my last, we had to make the decision about whether all of my potential children would be his. Even though we loved each other so much, we hadn’t yet made a long-term commitment to each other, it seemed that we’d have to talk about all kinds of things if we froze embryos. What would happen if we did split up? Would he be okay if I had his children with another future partner? There is a small benefit in freezing embryos, but it didn’t seem to be enough to justify all of the stress that came with it. Not for lack of love, but mostly because the conversations around making babies together that day we’re just too intense to have amidst everything else, I decided to freeze my eggs.

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We also had to decide whether egg freezing was really worth it considering my cancer was hormonally responsive. Was it worth it to speed the growth of the cancer inside of my body, by giving me the hormones necessary to produce and extract multiple eggs? Was I — and were my doctors — willing to delay chemotherapy if I needed to go through multiple rounds of extraction in order to guarantee viable offspring from this? As it turned out, any delay would significantly change my treatment plan. We spent all day in that doctor’s office, on the phone with my other doctors, discussing the financial and physical implications of this, and decided — my doctors, my partner and I — that I could go through exactly one round of fertility treatment and then would start chemo.

Over the next two weeks, I gave myself hormone shots twice a day in order to induce my body into hyper-fertility — producing in my case 28 eggs rather than the normal one during each menstrual cycle. I went to the fertility clinic daily for blood tests and to have ultrasounds in places I genuinely didn’t know you could ultrasound, and thought a lot about fertility. We were told not to have unprotected sex during this time, because pregnancy during hyper-fertility could cause a lot of risks to me and any potential (28!) offspring.

As if I needed one more thing to worry about when getting it on: sex was hard enough! My breast was incredibly bruised from the biopsies and so being close together was painful. My mind was constantly racing all over the place, generally killing the mood. My (hormonal) IUD had been removed, and the moment it took to put on a condom was usually enough for my mind to race back to the cancer. Plus, I was tired in the evenings after days full of doctor’s appointments, and generally found myself crying pretty much every evening as soon as my partner came home from work. Still, I wish I had cherished whatever sex we did have during that time because it was the last enjoyable sex I’ve had. My chemotherapy and medically-induced menopause have led to intense vaginal pain, a major drop in my desire and huge changes for my body.

The day after my eggs were retrieved, I started getting monthly shots to send my body into menopause. Essentially, by shutting down my reproductive system, we could hide my ovaries from the chemotherapy. Since traditional chemotherapy attacks all fast-growing cells, it attacks oocytes and eggs. In short: menopause means no growth, so no attacks.

These shots should — the doctors claim — be completely reversible: as soon as I stop the shots, I’ll go back to the joys of menstruation. Of course, there’s no way of predicting if I’m in the percentage that these shots help, or the percentage that still gets sent into menopause or radically declined fertility anyway. I may never have a period again (one silver lining, maybe?). My doctors have recommended I get these shots for the next 10 years, potentially pausing to try to have kids, if I’m willing to bear the risk of all the hormones that come with pregnancy. What a choice to have to make! In the meantime, I’m facing the realities of menopause at 30.

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From what I’ve heard, menopause is never fun, but at 30 and flirty it’s pretty much the worst. My only expectations of menopause came from Mrs. Doubtfire, in which Robin Williams, dressed as an old woman, sets his (fake) breasts on fire while cooking. He says, “Less than 24 hours a woman, and already I’ve got hot flashes.” I assumed menopause would be a bit like that — burning breasts? The only thing I knew to expect was the hot flashes. They are uncomfortable, of course, suddenly feeling hot all over, but wearing layers and turning on a fan tended to make me feel better pretty quickly. My doctors warned me of mood swings and a lot of emotion, but given everything else going on, how could I not have all the feels? My doctors did not warn me about vaginal pain or decreased desire. Normally, both are treated with hormones that I couldn’t take, because again, these very hormones were feeding my cancer.

Vaginal pain is not fun to talk about, but I can assure you it’s even less fun to experience. My partner and I tried different types of lube, but anything other than coconut oil irritated me. Pretty soon, I realized there was something even more serious going on, so I went to see a gynaecologist. She diagnosed vaginal vestibulitis brought on by the chemo and menopause. Vestibulitis is, yet again normally treated with estrogen pills or creams, but since I couldn’t have that, my doctors tried an antidepressant that was supposed to help with the pain. It didn’t help my vagina, and it didn’t help my moods either! I’ve finally come off it, after months of hoping it would work, while still facing pain during any kind of penetration.

This was not my first time having painful sex. In fact I faced it every few months during a period of what was diagnosed as recurring yeast infections earlier in my life. Then, two years ago, I was finally diagnosed with a vaginal condition (lichen sclerosus) that usually affects women after menopause, but that had probably been affecting me since I was 13 because it is often misdiagnosed as yeast infections among young woman. I never knew during adolescence that vaginas were intended to be pain and itch-free. When I was finally diagnosed in my 20s, I was so sad about the years I had spent misunderstanding my vagina and angry at the doctors who hadn’t diagnosed me sooner. Once I was appropriately diagnosed and started the right treatment, I enjoyed sex all the more.

Having already overcome pain in the past, I was upset that painful sex had reared it’s ugly head again. Given all that we were going through together, I wanted to connect with my partner in a way that only sex provides.

To oncologists and surgeons, sexuality never seems as important as saving your life. I value saving my life pretty darn highly as well, but is it wrong to also want a thriving sex life? I brought up my vaginal pain in every meeting with my oncologist, who always recommended discussing that with my gynaecologist, who has no expertise in chemo-related sexuality changes herself. It was as awkward as a conversation about sex with any stranger, but also frustrating, since all of my doctors couldn’t quite seem to grasp how painful this was.

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I admit that sex wasn’t my main priority during this time. I was having major digestive side effects of chemo that brought me to my oncologist and specialists weekly; I was struggling to think straight because of the intense brain fog that is ‘chemo brain’ and I was tired all of the time. I was seeing doctors every day of the week and scheduling something with my gynaecologists always seemed to be the last priority. When I did see her, she suggested massaging my vagina twice daily with coconut oil to better lubricate it, but given how intense my vaginal pain was, this was an excruciating prospect. It was hard to be motivated to do it every day, or even once a week, particularly when I had zero libido.

Chemo and menopause had brought my sex drive to its lowest point ever: I normally love sex at least several nights a week and really enjoyed the time in my life when five times a day was an achievable ideal. During chemo, I was almost never in the mood. All of my doctors told me this was normal, considering everything that I was going through, but it was hard for both me and my partner. We had already gone through a period when my sex drive was lower than normal, soon after we moved in together. At that point, my loss of libido was mostly because of the stress of the move and a major professional transition for me: I wasn’t feeling like myself without a thriving career. That had been really difficult for him, as he took my loss of sex drive personally, seeing it as me losing interest in him. We had talked a lot about how arousal is shaped not only by desire, but by mental and physical factors, particularly stress. We worked on how I could show him just how attractive I still found him even when sex wasn’t involved. In some ways, it was easier for us both the second time around, because there was a clear and understandable medical reason for my lost libido, but in other ways I think it may have been harder for him, because, well, you can’t really complain about your cancer-patient-girlfriend not having enough sex with you.

For me, wanting to have sex also has to do with feeling sexy in my own skin. I wasn’t as comfortable being naked as I had been before. My body wasn’t my body anymore. The breasts I had always known and loved had somehow betrayed me and suddenly one had an expiration date. I was reminded of this every time he would touch one of my breasts.

I had a medical port in place right above my healthy breast to make it easier to give me IV drugs. I lost all of my body hair, and while I tried my best to make the process as fun as possible — a cute pixie cut, sunflowers buzzed into my short hair and amazingly colorful wigs — it really didn’t feel the same.

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I had been afraid of breast cancer since my mother had a double mastectomy when I was 13, a really aggressive response to her very early-stage breast cancer. I never feared dying of it, and to be honest, I was mostly afraid of losing my fast-growing hair. From 17 onwards, I donated my hair every two years to make wigs for cancer patients, even when my college boyfriend said he didn’t think I’d look great with short hair. At 28, I had gotten a pixie cut, with the support of my current partner, partly, I think, to prove to myself that I would look good with short hair and to do it while it was fully within my own agency.

As it turned out, losing my hair wasn’t the biggest change to my body because of chemo. Movies always show cancer patients as skinny and wasting away, but I gained 30–40 pounds during the course of chemo. For my body, this felt like a huge amount. I had to buy new clothes as the old ones didn’t fit, and then had to buy new new clothes because the new ones didn’t fit. Clothes shopping itself was awful, having to constantly look in the mirror at this new body, and wondering whether this weight gain was permanent. Early on in my diagnosis, I tried to find a positive side to everything: I had joked about weight loss as one of chemo’s perks. It was a bad joke, and it felt like fate was trying to prove how wrong I was.

Hair loss, a port, weight gain… My body just didn’t feel like the one I had been used to. While my partner said he thought I was as sexy as ever, I still didn’t feel the same. I didn’t feel comfortable in my own body or seeing my body in the mirror, and I definitely didn’t feel sexy.

My therapist suggested trying out some new things, like sexy costumes, new bras or role-playing to increase my desire and my sense of sexiness. I bought a bunch of lacy bras and wore the clothes I felt most beautiful in when we were together. That did work: I felt sexier in my own body, and felt more like having sex because of it. Intercourse was still so painful, though, and while I kept wanting to try to see if the medication was working, neither of us thought it was a good idea for me to just “push through the pain,” as one gynaecologist, a therapist and several friends had recommended.

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I still loved going down on my partner, and we tried some new things. Most memorable by far was giving him road head after a particularly long and late night appointment far from home. I’ve also tried new vibrators focused on clitoral stimulation. He encourages me to use my vibrators when I am with him. He also really enjoys going down on me, but I have never in my life been able to come from oral sex. I’ve read more about sex since going through this, and I’m intrigued by the idea that heterosexual couples may be too focused on orgasm to enjoy all of the pleasure along the way. That said, I miss my orgasms during intercourse, especially those few times when we came together.

This story doesn’t have a clear or fabulous ending because I’m still in the middle of my journey. I’m writing this exactly 2 weeks after a single mastectomy, which amputated my left breast, and replaced it with tissue from my stomach. I have a scar from hip to hip and several scars all across my breast. It took me at least a week to look at my breast in the mirror and I’ve avoided it for several of the days that have followed, but as I look down on it now, the scars from the surgery look better and better. I’ve got to say, my noob is pretty hot.

I moved states to have my surgery, and Yale New Haven has recently opened a clinic called Sexuality, Intimacy and Menopause Services (SIMS), where I was able to meet with the first doctors who really took my sexuality concerns seriously. It was an amazing feeling to talk to doctors who understood that I had other really serious medical issues going on, but that this was really important too. They made me feel normal: that I’m not the only cancer patient going through this, and I’m not the only young woman (or man) struggling with pain during sex and lack of sex drive.

We laughed, I cried, and they showed me some magic. It sounds crazy, but a little bit of lidocaine (numbing cream) in just the right place made everything better. I could still feel sensation, but I couldn’t feel the pain anymore. They gave me a lot of other systemic suggestions, including plant-based supplements to increase libido, vaginal moisturizers, and the use of dilators to help reduce my pain. The combination of the supplements and the chemo meds leaving my body are definitely helping: my desire is coming back and with it, my desire to make sex less painful. I’m using dilators and moisturizers daily, and playing around with vibrators when I’m in the mood. My partner and I still haven’t been able to have sex yet — add long-distance and my living with my parents post-surgery to the list of things getting in the way — but I am optimistic that by the time the logistics get us back together, I’ll be ready and able.

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Right now, the SIMS clinic is only open once a month, but I hope that for all of the other young women and men that struggle with pain during intimacy that more of these types of clinics open to help us, and that more doctors of all kinds begin to see sexuality and joyful sex as something to plan around and protect, just as they are beginning to do around fertility, and just as they have always done for survival.

And as for relating to my body, I know that once I’m able to really get back to my life and my exercise I’ll lose some of my chemo weight. I’ll start to feel more like myself not only in my body but in my mind. I have found ways to love my body no matter what happens to it, and I think that’s pretty damn important.

When I started losing my hair, I shaved my head at a black barbershop for a nice fade and asked for daisies in my buzz. When I lost all of my hair, I painted my bald head. When totally bald, if I dressed to the nines (think ball gowns and saris, when appropriate), I felt like a goddess or a queen from Game of Thrones, rather than a cancer patient. When I look in the mirror, I try to focus on the parts of my body that I love, and I accentuate those. I’ve discovered that blush and bright lipsticks make me feel more whole.

I take a moment every day to be grateful for the parts of my body that are working perfectly. No matter how short the list, there’s always something. Some days that list could look like my liver showing no signs of difficulty and perhaps the beauty of my forearms. There is always something. I talked to fashion friends about what clothes would work best with my current body type, and I went to consignment stores to seek those out. There are now so many days when I look great — and more importantly, when I feel really really good.

A friend told me a year ago, long before this all started, in a conversation about body image, “You’ve got to love your body as it is right now. Your body might get better, more like you want it to be, but the only guarantee over a lifetime, is that your body is going to get less like that ideal you strive for.” That ideal, most often shaped by what society tells us is attractive and sexy, isn’t often realistic. She reminded me that the things I dislike about my body have actually never changed, no matter how much weight I’ve gained or lost, I’ve still found things to hate about my neck and the way my thighs touch. Reframing that, it means that no matter how much weight you gain or lose, you can always find ways to love your body.

I’m so glad that she and I had talked about that, and that I had begun to put it into practice before my diagnosis. There have been moments where I haven’t been able to make it work, but there have also been moments where I have loved my ever-changing body so deeply, simply for breathing and having a heart that continues to beat. So, a promise to you, dear reader: if you can love your body as it is right this very minute, you’re set for whatever comes your way.

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