After being diagnosed with breast cancer, Darlaine struggled to feel comfortable with her body and dating. She shares why it is so important to share experiences about sex and intimacy after breast cancer.
Surgery left my confidence shattered
I was diagnosed with breast cancer in October 2016 after attending a routine screening appointment.
When they told me, I felt strangely calm. I just wanted the cancer gone and to get on with my life. My partner came with me on the day of my diagnosis. He said to the nurse, ‘Don’t worry, I’ll look after her.’ We had been together for four-and-a-half years.
My partner stopped paying me attention
After my first operation, I noticed that my partner had stopped giving me any sexual attention. At first, I thought it might be because he was scared to hurt me, but it continued throughout my treatment.
By January 2017, I found it increasingly hard to manage emotionally. I was working full time, commuting for four hours a day and going back and forth from the hospital – it was overwhelming. I gradually felt the need to be on my own for a while, so I temporarily moved out of our home into a bedsit nearby.
We still spent some evenings together, and all the weekends together and we spoke constantly – we were still very much a couple, even though we’d stopped having sex.
I found out he was on a dating site the day of my mastectomy
On the evening before my final double mastectomy, which was my final surgery, I found out that my partner had been on a dating website. I challenged him and he made a big show of deleting the profile. When I was in recovery, I checked and saw that his profile was still active.
It was a huge shock, especially as he had been outwardly so supportive after my surgery and taken care of me.
I was in a lot of emotional pain. It was like a double whammy. Having breast cancer and losing my breasts was bad enough, but being rejected by him was traumatic.
I was anxious about starting another relationship
I felt anxious about the possibility of starting another relationship. Not only did I worry about being knocked back again, but I was concerned about negotiating sex with someone new as my body has changed so much due to treatment.
Hormone therapy, which I’ll be on for at least another seven years, comes with a whole host of side effects, including painful joints, vaginal dryness and mood swings which would make it near impossible to have the sex life I used to. I also experience fatigue – can you imagine if I fell asleep in the middle of the date!
I was also worried about what people would think of my body. I’m okay with my reconstructed breasts – they remind me of what I’ve been through. But I’m sure that the lack of nipples would look strange to someone else. I’m still on letrozole and have gained weight, something I struggle with.
It’s important to share experiences
It’s so important to share experiences with each other, especially about something like sex that isn’t regularly spoken about. As an NHS sexual health adviser, I encourage women to discuss their sex lives and issues in my everyday life at work.
I’d urge anyone who has just been diagnosed to join forums, like Breast Cancer Now's, and to speak to other women. This will help you learn and prepare what questions you need to take to your healthcare team, so you can get the answers you need.
I’ve taken back control of my body
I’m starting to feel stronger and more able to move forward with my life. Recently, I had my reconstructed breasts tattooed. I spent nearly a year looking at tattooists’ work until I found the right one. We collaborated on a floral design steeped in personal symbolism as each flower represents part of me and the people I hold close.
When the tattoo was finished, I felt amazing and had a real sense of closure – I had taken back control of my body.
I’m upfront about my diagnosis
In terms of dating, I joined a broadsheet dating site last year. It was unsuccessful, but I think that was down to my mindset. I was still nervous about dating again.
This year, I joined another dating website. I’ve been upfront about my breast cancer, letting them know that I’m two years post-treatment. I don’t know if I’ll stay on the site, as out of the 1,200 odd men who have looked at my profile, only seven have been in touch.
I’m not sure if this is because of my age, or my diagnosis, or both. While I completely understand, it does make me feel somewhat undesirable.
Talking to other women about sex is so helpful
Although my care during my breast cancer treatment was generally great, the topic of sex was only touched lightly on by my doctors and nurses. It was all about the immediate things in hand, and I didn’t feel prepared for the aftermath.
I had the pleasure of attending a focus group on sex, intimacy and body confidence after breast cancer with Ann Summers and Breast Cancer Now. The session aimed to understand how best to help women who feel anxious about sex because of early menopause, side effects and ongoing treatment.
It was a diverse group, but we all had similar experiences of trying to adapt to our new normal. We talked about how this has affected our sex life and the lack of aftercare there is available to us.
It was brilliant to discuss something that’s usually so personal with other women and to share our experience of post-surgery sex, both good and bad.
There are many challenges to improving sexual wellbeing for women affected by breast cancer, and one of the first steps is starting the conversation and supporting all women who have had a diagnosis to talk openly with their loved ones or health care professionals if they choose.
Today we are launching our new partnership with Ann Summers, to help highlight the scale of the issues many women are facing, as well as encouraging and supporting this important conversation.
Find information on sex and intimacy after breast cancer.