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I was talking to 2 friends the other day, who both had double mastectomies for advanced breast cancer. Kim and Ellen (not their real names) had complete reconstruction and neither one had been able to save their nipples.
They were both talking about how difficult it is to look at themselves in the mirror and not feel dejected and guilty at the same time.
Why it’s taboo to talk about
It’s embarrassing to talk about, they both agreed, because they feel like they shouldn’t complain, I mean after all, they’re alive, right? Well, that’s part of the problem, there’s a lot of shame that’s just under the surface and feelings of frustration that their bodies aren’t their bodies anymore.
Kim said that she doesn’t feel like a woman and in hindsight is questioning her reconstruction. “I’d rather be flat than have these things, with this weird fake nipple. The whole area is numb, like your face is, after seeing the dentist, only it doesn’t go away.” I asked her about sex and any sensation that’s left. She frowned, “That’s been a challenge?” She pointed to her breasts, “I’m still getting used to my new girls and it’s been 2 years.”
A recent study from the Breast Program at Massachusetts General Hospital showed that for some women, Nipple Sparing Mastectomies (NSM) offers the same chance at survival as total mastectomies. More and more women are now making this choice because this is one of many studies that show that women don’t need to sacrifice their nipples to decrease their chance of having recurrent breast cancer.
It’s normal to feel angry
Ellen was even more ticked off. “I’m sick of having this thing re-done and re-done. I’m just going to live with it. It’s hard to talk about it, because I feel so grateful not to have cancer, and yet, I look at myself and I have to let go of who I was and try to accept who I am now. I know it’s just a body, but it was MY body and now this seems like someone else’s.”
She went on to talk about her reconstruction and how long it took to have the expansion, how painful it was and how overwhelmed she felt.
She was frustrated by how much of her body and her self-image she had to literally let go of. She also said that she just wanted one thing in her life to be easy.
I have other patients who decide to have a total mastectomy and then have a tattoo of their nipples done by a highly trained tattoo artist. These are lovely and look like the areola and nipple. They aren’t raised like a nipple, but are another option.
If you or someone you love is contemplating a mastectomy, it’s important to consider if it’s safe to spare the nipples. As overwhelming as it is, and as much as you want to put this all behind you quickly, try to pause and take the time to think about your life after surgery.
Most women who have breast cancer and those who need a mastectomy will beat their cancer and go on to live very healthy lives for decades. In fact, there’s a new word for this: Survivorship, because, after the initial shock of diagnosis and treatment, most women will integrate any post-cancer treatments into their regular lives. So, do talk to other women, get second or third opinions about surgery and consider all of your options.
It’s been my experience with patients and friends, that everyone needs time to think about many aspects of their life after surgery. Everyone needs a safe place to walk through the options and discuss the longer-term issues of what survivorship and their life will be like after the surgery with the medications that are now being used, what is involved in the surgery and after-care and what other women’s experiences have taught us.
I’d like to hear from you. Did you have a mastectomy or a nipple sparing surgery? Have you had nipple tattoos?
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