Sex & Cancer: Sexuality During Cancer Treatment

Erika Lust Films producer and director Rebecca Stewart shares her personal experience of sex & sexuality during treatment for breast cancer. Rebecca has just directed her first movie for XConfessions, Wash Me, based on her own story of rediscovering her desire after cancer treatment. To mark Breast Cancer Awareness Month, the movie is available to watch for free during the month of October.

Check out more information and watch the film for free here.

Upon receiving a cancer diagnosis, sex is probably the last thing to enter your head. The first few weeks are filled with anxiety, blood tests, bone scans, MRIs, and more anxiety. I had so many needles stuck in me I felt like a pincushion, the last thing I wanted was my boyfriend sticking something else in me. But as I absorbed the news and became accustomed to my new routine of hospital visits, my usual desires returned. I may have become a patient, but that didn’t stop me being a sexual human being.

One of the first things a fellow patient said to me was “this will ruin your sex life.” I was surprised she said that before anything else, the thought hadn’t even occurred to me. When it comes to the side effects of cancer and its treatment, we talk about the hair loss, the nausea and the appetite loss but we rarely talk about our sex lives. No matter what kind of cancer you are diagnosed with its treatment has a profound effect on all aspects of your life. From changes in your physical body image due to surgery, to erectile dysfunction, vaginismus and chemopause. These side effects are so rarely spoken about that doctors are often at a loss of how to help or even clueless to their existence. In a 2010 Livestrong report, 43 percent of the 3,000-plus cancer patients surveyed had physical problems related to sexual functioning and only 13 percent got help for them.

My professing friend was right. My cancer had a huge impact on my sex life in ways I couldn’t have imagined. As a porn producer I’m used to speaking about sex on a daily basis, often forgetting it’s not normal to talk about my favourite sex toys at polite dinner parties. My ease a discussing the inner workings of my vagina and fluctuations in libido made me a veritable lab rat to my oncologists who used my insights to confirm suspicions they’d had about common side effects but that so few people report. Now six months after finishing my treatment, my sexual rollercoaster ride is nearly over. I hope telling my story will encourage the conversation.

When I was diagnosed the information didn’t sink in for several days. I was in such shock I couldn’t react. I even went into work as normal the next day, albeit like a zombie. The moment it hit me was a few days later when my doctors told me my treatment plan – 6 months of chemotherapy followed by surgery and radiotherapy. I knew what that meant. I’d seen it in the movies. I suddenly had visions of myself bald, pale and translucent lying in bed unable to move. My main concern quickly became about my image. How could my boyfriend find me attractive like that? How was I going to keep him satisfied when I was sick? We’d only been dating a few months it didn’t seem fair to put him through this. As I began to panic producer mode kicked in, I opened an excel spreadsheet and started planning.

I researched the best eyebrow tattoo artist in Barcelona and visited every store in the city to find the perfect wig so that I could hide my impending hair loss. I knew I wouldn’t want to wear the wig 24/7, not in the Barcelona heat, but my boyfriend could never see me without it. If he ever saw me bald then, like seeing me do something unspeakable on the toilet, he’d never find me sexy again. So I decided I’d wear my wig every evening when he got home, I’d have a special hat for sleeping in, and once a month I would put on my hair, draw on my eyebrows, glue on my eyelashes and we’d have a date night with sex afterwards. That way, with all my “trimmings” I would feel attractive enough to be intimate with him. These plans thankfully lasted as long as my hair did. Everyone knows you lose your hair when you have chemotherapy. But many probably don’t realise that means you lose it everywhere. My pubic hair actually fell out first. I had come out of the bath and after towelling myself dry down there I noticed I’d sent a confetti shower of pubes all over my bathroom floor. Like a budgie in the mine I knew what was coming. It may not be nice to go bald but having a painless (and free) Hollywood wax down there all summer long was definitely a perk.

A couple of days later my hair started to fall out. As advised I went to the hairdressers to have it cut down to a crop. I still had a couple of days before the falling strands became falling clumps so I wanted to ease myself in, like splashing myself with water before the big jump. I knew my natural blonde hair made me something of an exotic creature to my dark, mediterranean boyfriend and I was nervous to show myself to him without it. As I sheepishly walked into the bedroom he exclaimed how much he liked my short crop. I brushed off the compliment, sure he was just being polite. But as I placed my bags on the bed he put his arms around me and pressed his hard on into my back. I guess he must have been telling the truth…

There’s nothing like being faced with your own mortality to get you in the mood. Once the initial anxiety wore off and we relaxed into the “new normal” our sex life exploded. I needed affirmation of life and what’s more life affirming than sex? I also felt a bond with my boyfriend that was deeper than anything I had experienced. He had held my hand when the doctors told me the bad news, he’d made up children’s stories to distract from the claustrophobia as MRI machines swallowed me whole, he’d waltzed with me down hospital corridors to calm me down from panic attacks. It didn’t matter that I was bald as an egg, we had fallen in love with each other in a completely new way and we needed to show it. As the months passed by the chemo began to take its toll. By now I had started to lose my eyebrows and eyelashes as well, I’d also lost about 10 kg and I felt tired all the time. Chemotherapy works by attacking all rapidly reproducing cells in your body. In its assault on cancer cells it also damages the cells in your hair follicles and digestive tract, hence the hair loss and nausea. It also fries your ovaries and damages the mucous membranes in your mouth, nose, eyes, ears as well as vagina, penis and anus. I had regular mouth ulcers, nose bleeds, unrelenting thrush, vaginal dryness and unbearable hot flashes as my periods had stopped, possibly forever. As well as dealing with the effects of treatment, my body was also undergoing the physical processes of the menopause. Suddenly I was a 29 year old woman with the libido of a 60 year old.

On the few days I was interested in sex my body no longer played ball. No matter how much I wanted it, no matter how much foreplay we did, I physically couldn’t be penetrated. It was like the gates had closed. This was a completely alien experience to me and when I brought it up with my doctor she explained it was probably vaginismus. In a previous Lust Zine article my colleague Brogan talks about her experience with it, explaining that it’s the body’s physical rejection of penetration.

Up to 17% of the general population suffer from vaginismus but these statistics are unreliable as so few people are comfortable reporting symptoms. One study shows that around 70% of women diagnosed with breast cancer and 90% of men diagnosed with prostate cancer will experience some sort of sexual dysfunction like this. But again this is impossible to know for sure as so few people report the problem. The symptoms may have psychological or physical causes, or both. In my case I expect my body was going through so much physical trauma that it had just decided a penis was the last thing it wanted to deal with. It was a hard reality to accept at first. Sex was what made me feel healthy and normal during all the trauma and now it was taken away. I kept trying to make it work but it seemed as though the more we tried the harder it became so we decided to take the pressure off and remove penetrative sex as an option. No matter how hot and heavy we got, neither of us would even suggest we try penetrative sex for at least two months. It was an eyeopener. Like suddenly going vegan it forced us to get creative. It made us relax and take things slower. We focused more on each other, making whole sessions sometimes just about one person’s pleasure. For the first time in my life I felt comfortable enough to receive head and then just fall asleep in a post coital haze rather than “returning the favour” or “rewarding” with sex.

Unfortunately post-coital hazes were almost as hard to come by as hair on my head. My whole body felt slightly numb and my head hazy, like I was walking through water. Consequently, orgasm became almost impossible to reach. On the days that it was possible to get there it took great effort and my boyfriend deserves an Olympic medal for his stamina. I became frustrated and grumpy. There was almost no joy left in my days: I couldn’t run because I was too weak, I couldn’t eat anything other than plain potatoes because of the nausea, I couldn’t cuddle because of the hot flashes, and now I couldn’t come. In the end the no penetration spell lasted well over 4 months and the orgasm block until well after I’d finished treatment. But that period, although difficult at the time, enhanced our sex lives more than ever. I learnt to relax and enjoy the sexual experience for what it was and stop worrying about reaching the finish line. As an added perk, my boyfriend’s heroic efforts to get me off when it was nearly impossible have honed his skills to master levels. Like training with weights on, we have now taken them off and he’s fitter than ever before.

Now that I have finished my treatment I’m getting used to my new body. I’m lucky that I didn’t need a mastectomy but I still have some large scars where the surgeon removed the area around the tumor. I’ve actually never minded scars. I see them as good story starters and these ones serve as proof of everything I managed to do that I never thought I could. I show them off whenever I get the chance – probably another faux pas for polite dinner parties.

My life is slowly returning to normal but there are parts of me that will never be the same, not just physically but psychologically. I’m sure many fellow survivors will agree that the real battle is in the mind and it’s a struggle that lasts forever. Looking back on my experience I view it positively. Of course I was lucky with my diagnosis to have a cancer that responded well to treatment and that didn’t require a mastectomy. But I was also lucky to be part of a social circle that is very open about sexuality and so I always felt supported and confident talking about the problems I was facing. Cancer treatment is bad enough without also feeling embarrassed or ashamed about how you and your body may be reacting. As a newly minted survivor, my goal now is to make everyone I meet more comfortable talking about cancer and its effects. It doesn’t need to be the elephant in the room, and especially not in the bedroom.

Wash Me is a new adult film that offers an intimate portrait of a woman re-discovering her body and desire after breast cancer. Based on the director's own story, this is the first explicit film in history to raise awareness about sex with breast cancer.