Are Nipples a “Gay Thing”?

Hi – I’m 55 and I’m a gay woman. I want to write briefly about my experience of a preventative double mastectomy, partly because I think the gay perspective is one that isn’t heard often. Of course, I don’t speak for “the gay community” or anything like that – once you’ve met one gay person, you’ve met one gay person, and generalisation is not a good idea! Everyone’s experience – whether it’s of being gay or of being a BRCA mutation carrier – is different.  

I finally had confirmation that I have a BRCA 2 mutation in 2019. It was the end of one long journey and the start of another. I had always known there was something different about our family – most of the women on my mother’s side had died, very quickly, from breast cancer, usually in their early 70s. My aunt had been discovered to be a BRCA 2 carrier a couple of years before, and my mother developed breast cancer in 2018. She died before the genetics appointment came round but was able to give consent for her blood to be taken and tested, and the result came back a few weeks later – she had the same mutation as my aunt. Armed with that, I was tested, and came back positive. 

 For me, I think, there was partly a sense of relief about the diagnosis. I had personal experience of cancer – I had bowel cancer in 2010 aged 41 – and had become quite worried about the fact the family history might well mean that there was a chance that I’d be susceptible to breast cancer too. Knowledge – of the mutation and of what it means in terms of the “mechanics” of cancer – felt powerful. Yes, the estimated risk was very high, but – unlike with the “surprise” bowel cancer – I had a chance to do something.   

 Logic v’s emotion 

 As many BRCA carriers will understand, the decision to have a double mastectomy was both easy and difficult. Logically, it was very simple: I did not want to go through cancer and chemotherapy again, and I didn’t want to die young either – the surgery gave me the best chance. The emotional side of the decision was far less straightforward, and I think the fact of my being gay (or at least of being a gay woman of a certain age) played a role in that. I think there are aspects of the gay experience, too, which it would be valuable for medical professionals to understand: after all, it’s likely that 5% or more of the women they encounter with a BRCA mutation will be gay. 

The most obvious manifestation of that femaleness was, for me, my breasts. Now, of course, I remember them fondly as simply amazing: they were huge, responsive and beautiful. But, as a young gay woman, I certainly did not appreciate them – they were deeply embarrassing. I wanted to express myself in clothes which didn’t draw attention to my curviness – I got quite a bit of harassment which I put down to the sheer size of my breasts. Quite honestly, I wanted to be flat-chested. I wore wired bras which were far too tight and attempted to push my breasts flatter. It took me many years – and the love of my amazing wife – to move away from that. In some ways, the BRCA diagnosis – in the first instance – pushed me right back there: my breasts were being embarrassing again. 

Shame and embarrassment about the body becomes quite difficult in the context of a BRCA diagnosis. As soon as you’re referred to a breast surgeon, everything is kind of “out there”: you need to engage, quite quickly, in some very intimate conversations. My surgeon (Miss P) was magnificent, but there have been times when the conversations have gone a bit further than she would ever have anticipated – partly as I needed to use them as a space to work out how I was really feeling about the various surgical options. I’m deeply grateful to her for having given me the space and time. (Covid gave me a lot of time to think, too: I waited 3 years for my mastectomy, which took place just over a year ago. I am currently waiting for the expanders to be swapped out to over-the-muscle implants).  

 Celebrating my femininity and my lesbianism 

 The most difficult – and in many ways the richest, most precious discussions have been around reconstruction. Miss P was very pragmatic about the need for reconstruction: my breasts were simply too large for her to be able to achieve an aesthetic flat closure – however much my younger gay self would have wanted that. But, as I said earlier, I’ve moved on from that – embracing the idea of reconstruction has actually become an important part of asserting and celebrating my femininity and my lesbianism. For my wife and I, at least, the most beautiful part of being with a woman is the symmetry. When you hug, you embrace someone who is the same size as you, and things ‘line up’ in a really comforting way. In bed, that symmetry becomes amazing: you make love understanding what the other person is feeling, physically, and they reciprocate that, understanding you in a deeply intimate way. There is something beautiful about looking down and seeing two pairs of breasts touching each other and feeling that closeness. 

I feel very guilty that I have robbed my wife of that, but the logical part of me (and of her) knows that it was necessary. Even though things are obviously different since the mastectomy, it means a lot to us that that symmetry is still there.  

Where my wife and I really struggled was with the fact that it was not possible to save my nipples. Again, Miss P was pragmatic – it would be very difficult to get them in the right place, even if they survived the surgery, and there was a slight risk associated with keeping the tissue. However, nipple play is a very large part of the symmetry of lovemaking, for us at least, and we have both struggled with losing that.  

The initial idea was to have 3D tattoos once the reconstruction is finally over – Miss P did some research on that, and the results are visually stunning. However, I explained that I find that idea – of having something flat fooling us into remembering what we have lost – just hammers home the brutality of what has happened, and of what I have taken away from my wife. Instead, she is going to reconstruct nipples when the expanders are swapped for implants, so that we have something physical – obviously, the sensations won’t be the same, for either of us, but it feels more comfortable. It has been interesting – and perhaps at times embarrassing – to work through this with Miss P, but she’s had a great attitude to it: she says she’s certainly learned something about how “nipples are a gay thing” (I hope they’re not just a gay thing, but I appreciate her attitude!).   

 Don’t make assumptions 

I’ve generally had a very positive experience with medical teams through my BRCA journey – and I am hugely grateful to them – but I do think there are some aspects where people do need to think a bit more carefully about some of the assumptions they might make about patients, and the way these can come across, even when not intended.  

Hospitals do assume heterosexuality – even on the ward after my operation, kindly nurses were asking me how my husband had reacted to my mastectomy! I attended initial discussions with the gynaecology team without my wife and found that my shame was making it too difficult for me to communicate clearly about my biology and past experiences. A lot of that was “baggage” from previous difficulties – for example, with needing to explain my sexuality when having smear tests. I suspect I’m not alone, in women of my age, in feeling that, and it would be valuable if medical teams understood some of those experiences and the effects they might have. 

 

Thank you for writing such a deeply personal blog. It’s very brave of you to share, so honestly, the emotions that you have faced during your jouney and it’s important for us all to hear and understand it from a different view point. Xx