I was talking to 2 friends the other day, who both had double mastectomies for advanced breast cancer. Kim and (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 have one nipple that’s horizontal and points straight ahead like a headlight, and the other that’s off in it’s own direction, like a wandering and wayward child.
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. It’s numb, like your face would be after seeing the dentist. I asked her about sex and any sensation that’s left. She just laughed, “Are you kidding me? I’m not comfortable with my body and it’s been almost 2 years, then add to it the dryness from tamoxifen and forget about it.”
Now, a study from Georgetown shows that for some women, nipple sparing mastectomies offer the same chance at survival as total mastectomies.
Here’s the YouTube video from the Journal of Plastics and Reconstructive Surgery.
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 complain that sex was different. She was grieving so many losses that she just wanted one thing in her life to be easy.
It’s been my experience with patients and friends, that they need to have a safe place to vent and talk about their very valid feelings without someone trying to “make them feel better” or give well intentioned cliches. Recently I did a segment on Breast cancer.