Angelina is a brave woman

Is it old news to do a post responding to Angelina’s brave announcement last week?

You can imagine how many people have asked me my thoughts on this. I appreciate your interest, and I think it’s great how much dialogue Angelina’s words have sparked. I could have done without the narrow-minded, withering and smarmy responses to Angelina’s announcement that popped up periodically on Facebook, but then, the haters will always hate, won’t they?

So what do I think?

That Angelina is a brave and strong woman, and that she deserves our respect. Bringing this complicated subject in to the public eye can only be a good thing.

But…

(There’s always a but…).

What worries me, coming at this from the less fortunate side of the bilateral mastectomy debate, is that a good news story like this can over-simplify the subject matter a little.

Just in case you’ve only recently started reading my blog, a quick refresher on my experiences thus far.

Last June, after a woefully slow diagnosis process, I was found to have an invasive ductal carcinoma underneath my right nipple. It was roughly the size of a twenty-cent coin (that’s a bit bigger than a quarter, my USA friends…). At my doctor’s advice, I underwent genetic testing, and found that I carried the BRCA2 gene mutation.

After some consideration, I decided to undergo a bilateral mastectomy – prophylactic on my left, removing the cancer on my right. I had no choice but to lose my nipples – one was already affected by the cancer, and from my perspective, any remaining breast tissue wasn’t worth the risk. I didn’t have enough spare tissue (eg a tubby tummy) for a natural tissue reconstruction, so I had the first stage of my breast reconstruction along with my initial surgery, just as Angelina did.

In the weeks following the surgery, I was really quite happy with the aesthetic result. Sure, I didn’t have nipples, but I did have rapidly expanding breasts, which was good fun. They were also gravity defying. Bonus.

Unfortunately, there were also tiny amounts of cancer found in my right lymph node. This meant that I had to start chemo before my final reconstructive surgery (the point where the expanders are replaced by silicon implants). I was assured that it was fine to keep the expanders in for the six months or so of chemo.

Sadly, it was not the case. My left breast developed a bad infection. It took months before it was correctly diagnosed as cellulitis (the bug responsible was called Pseudomonis) and by that point, the infection had also spread across my chest wall to my right breast. I was in terrible pain, and it took three additional surgeries, three week-long hospital stays, and five weeks of IV antibiotics (and the end of chemo) before the infection was finally banished.

The day they removed my left implant was absolutely heart-breaking. Ditto the day they removed my right implant. For months following I couldn’t look at my naked body in the mirror. I couldn’t bear to see the long ragged scars, the loose flab where my beautiful breasts used to be.

It’s still really hard. While I’ve now grown accustomed to my breast-less torso, at certain moments I’m suddenly abruptly reminded of how different I am from other women. I’m too scared to get a massage or a spa treatment because I don’t want to have to explain why I have no breasts. At the gym and the swimming pool, I now get changed in a toilet cubicle because I don’t want myself or anyone else feeling uncomfortable or awkward. For months I even tried hiding my scars from my own partner. It’s still many months before I can start again and embark on two more major surgeries to hopefully get my breasts back.

But what does this have to do with Angelina?

What she’s proposing avoids most of this nastiness. By having the bilateral mastectomy preventatively, you can usually keep the nipples. They go a good way towards hiding the nasty scars. And being healthy throughout the reconstruction (rather than immune suppressed while undergoing chemo) means that the chance of infection is very small.

However.

Here’s the interesting part. When I was debating the bilateral mastectomy, I was debating it on largely aesthetic grounds. It’s human nature to view it that way. But the thing is that having a bilateral mastectomy has a much, much deeper impact than purely aesthetic.

Let’s not beat around the bush here. Mastectomy is a pretty word for what is actually an amputation. Along with the breast tissue that is scraped out from the chest area go the nerves as well.

Over the months, the nerve endings try to repair themselves. A lack of sensation turns to strange dull pins-and-needles. Sometimes it feels like two phantom breasts are hanging off my chest. The lack of sensation extends right around to the start of my back, which feels quite painful to the touch.

It’s easy to say so what, you don’t need breasts. But actually, psychologically, I say you do. Without going into gory detail, breasts form an important part of a woman’s sexual physiology. It’s in this context that I miss them the most. I actually feel like less of a woman without them.

Will having fake, reconstructed breasts help reduce this? Maybe. But it won’t bring the sensation back. Those new breasts will never be completely part of me.

Looking back on those difficult days leading up to my mastectomy, I wish that someone had told me to really feel how it was to have breasts, and to remember that feeling. But everyone was too busy telling me how great my new breasts would look.

Right now, with my ravaged flat chest, do I most want the appearance of my breasts to return? No. I want the sensation to return. I want my chest to feel like it belongs to me again. I would be interested to know whether in six months time, Angelina feels the same way.

I’m not saying bilateral mastectomies are a bad thing. They’re a life saver. And I commend any woman with the strength to go through with it, particularly prophylactically.

But I just want the dialogue to go deeper than it was three months of discomfort but then I popped out the other end with great breasts – the end.

It’s just not that simple.

And we’re doing women a disservice if we make it out to be that simple.

This is my honest opinion. Please respect it for what it is – an opinion. I don’t know if my experience is typical, good, bad, middling, but it’s worth sharing. I hope it may prove of assistance to someone making what is possibly the hardest decision of a lifetime.

All my love, as always.

__

Postscript: As per always, Scorchy has posted some incredibly insightful comments on this topic. Definitely worth a read.

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6 comments

  1. Benj

    This resonates strongly with my feelings on the subject and, frankly, I feel a whole lot better hearing similar thoughts coming from you, as I was a little worried that my perspective was coloured by my … well, my perspective, as a man, who’s never had breasts (beyond the man-boob-y kind, which doesn’t really count in the same way) and whose gender identity isn’t informed by the breasts I have.

  2. Scorchy

    Brava! I couldn’t agree more. The more I speak to women about mastectomies, the more I learn that two things are discussed: the life-saving nature of the surgery and the eventual appearance. Women need to know the potential impact on their sexuality. Like you said, I certainly get the urgency, but a woman’s sexuality is not an afterthought. I mean, pills for erectile dysfunction were covered by insurance when birth control for women often was not. It’s madness. (Thank ye for the link.)

  3. annaphillips

    Have just finished reading you, Scorchy and the Orenstein article, she refers to. Pity that the public debate gets dumbed down by vested interests, even when those interests had pure beginnings. The other issue the general attitude to the poor breasts and their wearers. When is the medical profession going to learn that breasts are attached to real people, who love their perfect/imperfect boobies as much as blokes like their penises? A little empathy might improve doctor-patient relationships.

  4. Hayley

    Thank you so much for sharing this with us. It’s so much easier to understand what this surgery involves when you explain it from a sensory perspective. I will never take for granted the feeling of my breasts from the inside ever again. I think Angelina is a very brave women….but not nearly as brave as you Nic! xxx

  5. Jo-Anne Peters

    Yeah!
    I agree one thousand per cent!
    Even from this distance, that’s the aspect that hurts me so much. I know that it’s life saving but it’s …………..
    I’ve never mourned another woman’s breasts as I have mourned yours Nicci.
    Jo-Anne

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