First-Hand Accounts On BRCA & Our Sexuality

Nipples, boobs, foobs and scars all under wrap! ⁠This breast cancer awareness month we've been talking to BRCA communities about our experience of breasts and sexuality. From Instagram's censorship whilst we all try to raise awareness, through to a reluctance for our own sexual pleasure to be spoken about during consultations; there's a lot of to unwrap. ⁠

What Is BRCA?

BRCA stands for BReast Cancer gene. Everyone has both BRCA 1 and BRCA 2 genes in their body, and they are good; they work as tumour suppressors to help prevent certain cancers from developing in places such as breasts, ovaries and prostates. So, when we talk about the BRCA community we are actually referring to those of us that have a BRCA mutation. Having a mutated gene means it doesn’t work as effectively, and as a result we’re more likely to develop these cancers.

Both men and women can carry BRCA genetic mutation, and it can be inherited from either our mother or father – so if one parent has it, there’s a 50% chance it is passed on. As it runs in families, most people are tested for the mutation after a strong family history of the associated cancers (ovarian, breast and prostate).

Testing positive for a BRCA mutation is not a cancer diagnosis. We can live with the genetic mutation and never develop cancer, but the chances are pretty high. There are many options available to us once we have the knowledge of a mutation, these include; getting to know our breasts to increase early detection, regular breast checks through MRIs and mammograms, certain medicinal treatment called chemoprevention or undergoing a preventative mastectomy. A prophylactic double mastectomy is a procedure in which both breasts are removed to reduce the risk of developing breast cancer specifically by up to 90%.

These opportunities for prevention and discussion raise lots of questions and thoughts. Once we discover we have a BRCA mutation we start a journey, in which we all take different paths and at different paces (just like most things in life!). Whilst exploring our options or routes, there’s a lot to address with professionals, loved-ones and, perhaps most importantly, ourselves.

With help from The BRCA Project and BRCA Chatter, we opened up the conversation to 100s of vulva owners that have the breast cancer gene mutation – and here’s what came up. Consider this a BRCA forum for sex, sexuality and sexual pleasure.

BRCA, Breasts and Sexuality

‘I just know that the spaces where I've discussed BRCA and sexuality (e.g. hospitals) don't make me feel very open and usually come after a very intense day of meeting surgeons etc. Post-surgery I haven't had any opportunity to talk to others about sex post-mastectomy and it would be great to just chat.’ E

100% of the people that contributed to our discussion believe that our relationship between our breasts and sexuality isn’t addressed enough during BRCA chats with doctors and experts when we explore prevention options. One contributor highlighted how the focus is often very ‘clinical’, a practical approach that from a top-line perspective may be about cancer prevention – yet is so much more. Neglecting to consider how vulva owners connect conversations around BRCA back to their breasts (it’s in the acronym, people!) is another example of how many a taboo still needs to be broken.

From reaching out to BRCA communities, there’s two reactions when considering BRCA and breasts;

our perception of our breasts changes once we realise we are at a greater risk of them impacting our health.
Our perception of our own bodies and femininity changes if we choose to undergo preventative surgery.

‘Breasts and bodies are not discussed in terms of body confidence and sexuality.’ LM

BRCA and Sexual Wellbeing

‘I would want to know about how the mastectomy impacts sexual wellbeing. But I most certainly wouldn't want to talk to a surgeon about this... I think this needs to me more community based!!’ Christen from BRCA Chatter

Throughout consultations our mental, physical and emotional wellbeing is considered – as well as our relationship with partners – yet, there’s little said about our sexual wellbeing. We all know that our sexual wellbeing contributes significantly to our overall wellness and has mighty benefits – and is also linked to each of the other well beings.

Sexual wellbeing encompasses a lot, so naturally many themes came from our conversation. We hope that by highlighting these themes and questions we wished we could ask out loud as BRCA carriers, we can encourage more chats out in the communities – and show that we are not alone in wanting to ask such things or considering certain things.

Sometimes these conversations can’t be answered by one expert, but by a community – every experience is unique and our bodies and minds all react differently, so by having open conversations we can share and compare experiences – flag similarities, learn that some things are completely normal and unlearn negative biases we have on ourselves.

Female Body & Femininity

‘We're always told to love our bodies, whatever, but sometimes that's just not possible. I'm still quite scared about losing my nipples, for the look as well as the sensitivity. Also, I'm trying to be ok with the fact that I might never breastfeed as so many women can't anyway but sometimes wish we didn't have to make quite so many decisions that are so entwined with stereotypical "womanhood" or "femininity".’ RD

When it comes to the female body, breasts are often considered a determining factor. There are many reasons for this. The sexualization of boobs in pop culture as we grow up impacts our views on attraction and beauty standards. The heteronormative expectations of how vulva owners perceive their bodies from a male gaze and the confidence, or lack of, that it instils. The censorship of the nipple on social media platforms reiterating this phenomen and impacting how we perceive nipples; as something to hide and be precious about. The more biological defining functions that we learn at school and then are reminded of on our possible journey into motherhood; breastfeeding.

‘I often consider how I used to cherish my breasts as they made me feel so feminine - now sometimes I get upset during sex as I look down and think ‘will it be the same once I have them removed/reconstructed?’ Susie

‘One of my biggest anxieties is how my mastectomy and reconstruction might effect my relationship with my body and my sex life. I feel as though I’m vain for worrying so much about the aesthetic aspects and that I should be grateful regardless of the outcome. But body confidence is really important to me, as is my sex life. But seeing so many inspiring women who are post surgery show off their new boobs publicly is definitely encouraging!’ B

Changes In Sensation

‘I felt quite alone with the fear of loss of feeling. Shortly before the operation, I stood in the shower, let the water run over my breasts and wondered if I would ever feel something like that again. I could not stand the touch of my husband on my breasts. Now after the mastectomy I still can't consider my breasts as a part of my body that belongs to sexuality. During sex I find them rather disturbing and I don't know how to "integrate “them.’ Shit.happens_brca.too

Breasts also affect how we experience sexual pleasure – our own sexual pleasure – not that of a partner. Not only are they part of a female identity that pop-culture often so heavily negates, but they are also part of our pleasure-anatomy. Our sexual pleasure stems from more than just our genitalia, and nipples are an erogenous zone that ignites arousal and releases oxytocin; so, no wonder we worry about the loss of sensation. However, loss of sensation and sexual pleasure from this particular zone does not equate to loss in libido. Breast sensation may play a big role in our sexual pleasure, but we are not taught enough about where all our sexual pleasure comes from as females – and this could be the key! Learning more about our pleasure potential, the different ways to feel sensual and the physiological reactions that happen in our body could provide a new way to explore sexuality.

‘The loss of nipple sensation was glossed over in my appointments. Disregarded as not being important without asking me. My breasts are a sensual part of my body and with sensitive nipples and enjoyment I struggled through understanding this loss on my own. A bit more thought and conversation around this would have helped me understand and prepare better. Rather than just assuming not breast feeding my future children was the only negative.’ Louisa

‘It is odd to have zero sexual feelings from them where I used to before.’ Laura

‘I want to know about the loss of sensation in our breasts, post mastectomy and how that will affect pleasure during sex.’ RD

Me, Myself and I

‘A lot of the groups I see on Instagram, the focus is on children and family. How do they discuss this issue with single people/ LGBT/ people who do not want a family? It’s the 21st century! Wish people would stop asking me if I had a partner. Ask me how I will feel in myself and in my body.’ LM

‘My breasts are an important part of my identity and my relationship with myself, including self-confidence.’ Anonymous

‘I find it quite stressful that all the medical advice is around making decisions once you’ve had a family. Both for breast removal (after breastfeeding) and ovary surgery (after having children). What if you’re single? Should you wait until having a family to decide? It can put such horrible pressure - make you feel like you have no control over your own body as you wait for external circumstances to change so you can make a decision.’ Amitsa

Partners & Relationships With Lovers

‘My BRCA diagnosis affected my sex life more than I recognised. It completely changed my relationship with my boobs, and I became really weird about my partner touching them. He in turn became really awkward about what was allowed and what wasn't. The worst thing was, that we never spoke about it. We eventually split up 4 months after my mastectomy. There was a huge focus on how I looked post op. It came as a massive shock to me, because I was really happy with the outcome, and I had no idea that he wasn't. I think at the end of the day, there needs to be more support to have these uncomfortable conversations.’ Christen from BRCA Chatter

‘My only hesitation with going through with prophylactic mastectomy is that they won’t be attractive to my husband anymore.’ MelRose

Having Sex

‘I feel like I have had to learn all about my body again. I don't think I realised quite how much my breasts impacted on sex. I dont think I ever thought that they did that much. But now (post mastectomies) I can really feel that my implants make me feel the distance between me and my partner...like literally. He thinks he is close to my body because our chests are touching, but I feel like I'm far away because I have no sensation. Another thing that has been interesting and tricky to negotiate is that he actually finds my new boobs really sexy. That is obviously brilliant but throws up weirdness for me because I have no sensation whatsoever...which doesn't make it a very sexy experience for me and just reminds me of everything I went through. I'm trying to find ways to communicate that when he touches my boobs now it's like his hand disappears for me which is strange...but for him, they look sexy (thanks surgeons!) and so it's a bit of a head fuck for us both.’ E

‘I feel more sexy with my new small boobs. But at first, I wasn’t sure if this would be the case. When I first had sex with my boyfriend after my prophylactic mastectomy, I wasn’t sure whether to take off my post-surgery support bra. Would it have a negative impact on my breasts? Would my boyfriend be able to find my scars, ports and implants sexy? I hesitantly asked him if I should take it off. ‘Why wouldn’t you?’ He asked. ‘You always do!’ At the time, my boyfriend didn’t realise quite how powerful this small act of acceptance was. But it had a huge impact on how I felt in my new body. So yes, the bra came off, and I feel more sexy than ever.’ C

Tips From A Chat With @BRCAChatter

Christen from BRCA Chat is on a mission to get us talking about all things BRCA in a safe space, with her target audience she describes as ‘me, 5 years ago’ she’s determined to be a BRCA buddy that goes beyond hospital leaflets, consultation spaces and clinical terminology.

As a BRCA 2 mutation carrier, Christen decided to go ahead with preventative surgery last year. She gave us some tips on how to reconnect with our chests and sexuality post-surgery…

Feel up your foobs or scars - For women that have chosen to have preventative bi-lateral mastectomy, with or without reconstruction, the aftercare is often based upon exercises to encourage movement of shoulders, arms and the chest area. But, shouldn’t we be getting physical in another way too? Our surgeons and nurses may be too shy to tell us to feel ourselves up, but we think that’s exactly what we need to do! Getting hands on with our post-surgery chests could be a good way to get familiar and comfortable with the changes to our bodies.
Make it a date – It can be easy to avoid touching our chests in the everyday, kind of like burying our heads in the sand. From chatting, we realised that perhaps the longer we do this the more we can become disassociated from our chests. So, why not set aside some me-time; a romantic rendezvous for ourselves, our foobs or our scars.
Try a massage – There is a type of massage called myofascial massage, which is suitable post mastectomy. It focusses on addressing any chronic pain women might have post-surgery. It can also help soften any scar tissue. This could also be useful to start getting use to the feeling of touch on a sensitive area. Only book a massage once properly healed.
Chat about it - For your own wellbeing, it is so important to start having conversations about BRCA. Firstly, speak to others in the community, they are really warm, welcoming and always willing to share their experiences (and photos). Check out #BRCAchat on Instagram, where the community have already started answering your FAQ. It’s also important to talk to partners about how you are feeling. You might suddenly feel awkward about your breast. If you are open and honest, there will hopefully be less awkwardness during intimate moments.
Embrace what makes you feel good - Both pre and post mastectomy you might feel uncomfortable about your breasts. That doesn’t have to stop intimacy and pleasure. Explore new and exciting things - use this experience as an opportunity to focus on other parts of your body and getting to know your pleasure anatomy. Is there hidden sexual pleasure in erogenous zones you had never considered before? Maybe there’s more sensations to unlock within your vulva or vagina. You can do this both alone and with a partner. Get adventurous.

To learn more about the BRCA gene mutation and cancer prevention, head to @brcachatter and @thebrcaproject!

We will be working with these communities in the future, so if you have any questions, stories, thoughts or ideas – let us know here.