Thursday, April 3, 2014

What's All the Flipple About the Nipple? (Part One of a Trilogy)

When I was diagnosed with breast cancer back in 2006, I remember asking my surgeon here in Minnesota if there was a way they could just remove the insides of my breast, while saving the outside, and then re-stuff it with something else. I guess I was thinking implant, since I didn't know that you could use your fat to rebuild your breast. I wince as I remember actually comparing it to a purse. Even to me, that sounded pretty dumb and desperate, and I figured he thought so, too. He looked at me like I was one bulb short in the attic and replied with one word, "No." Only later did I find out that my purse metaphor wasn't that far-off, nor was my question stupid. In fact, turns out the surgeon was the ignorant party in that conversation.

Someday I'll blog about skin-sparing mastectomies. But today I feel compelled to zoom in on a particular sub-area of the skin envelope (or purse)--and the part I was truly the most worried about when I asked my surgeon that question. This part of the breast can often be spared, as well, but it's not talked about a lot, even though it isn't nearly the fringe procedure it used to be a few short years ago. And again, as with so many issues involving reconstruction, a big part of the problem has been so many surgeons lacking training in newer breast recon techniques. So they decide not to inform their patients about alternatives they, themselves, don't happen to know how to do.

Maybe a woman not being informed that her nipple(s) could be spared doesn't rate up there in seriousness with other issues--such as docs recommending breast recon procedures best relegated to the surgical dark ages. But still, nipples are super important. I know lots of women who have suffered additional surgeries and procedures in the nipple quest to replace those lost to breast cancer--and it turns out they're not that easy to reproduce. I don't know exactly why this small, circular bulls-eye of pigmented skin emanates such strong juju in the context of the rest of the breast, but it's not difficult to imagine why. I'd guess part of it is mammalian hard-wiring.

After my lumpectomy (that was later followed by a mastectomy), what I feared most about removing my bandages was that my nipple would be gone. No one told me whether that was part of the "lump" they removed in the lumpectomy. And I felt embarrassed to ask the question, "Excuse me, nurse, do you know if I still have a nipple on this breast?" I was so happy to later find it there, in the middle of my bruised and battered breast, that I cried.

In fairness, part of the reason sparing the nipple is not universal practice yet is because there have been no large, longitudinal studies--as there have been in comparing regular to skin-sparing mastectomies--to determine the risk of nipples harboring or being potential incubators for breast cancer cells. Because of this, some women, even if offered the alternative of nipple-sparing mastectomies, decline. I've heard many women who've undergone prophylactic mastectomy due to their BRCA status, for example--which makes their risk of getting breast cancer sky high--say that if they are already going to such lengths to avoid cancer, they sure aren't going to take any unnecessary chances just to save their nipples.

But there is still a significant amount of research that strongly indicates nipple-sparing mastectomies are a safe alternative under certain circumstances, at least. And those circumstances may be expanding. That research has led to a greater understanding of where cancer cells seem to start-up and hang-out in the breast and the structural make-up of the nipples themselves. Since breast cancer often begins and dwells within milk ducts, and milk ducts reside in nipples, it's not a leap that nipples could give birth to breast cancer. Yet the cancer literature does not report any breast cancers originating in the nipple, so if one did, it would be a pretty freak occurrence. Instead, studies of actual nipples and breasts removed in mastectomies show that cancer starts out in very tiny ducts or the lobes that produce milk. But the ducts in the nipple are significantly larger, and the very few lobes in that area are found only where the nipple meets underlying breast tissue, nowhere near the nipple peak.

There is so much fascinating information about nipples that this warrants at least a nipple blog trilogy. So I'm going to close Part One with the list of factors surgeons now use to determine if a woman is a candidate for a nipple-sparing mastectomy. But I will be writing more about some new research--and there have been some relatively recent, exciting findings--so stay tuned!

1. At least two centimeters should separate the cancer from the nipple. Some docs think four.

2. Cancer tumors in the breast should be less than three to four centimeters, whether invasive or non-invasive.

3. No lymph node involvement.

4. Cancer should not be present in more than one quadrant of the breast.

8 comments:

  1. Well said, Eve! I've done the alternative...gave up my nipples even though I was reassured that nipple sparing was safe. If anyone out there has given up theirs during reconstruction either because she chose to do so, or was advised to, they do a wonderful job of recreating new ones that don't show through your clothes even if you don't wear a bra.
    Still feeling whole,
    Mary

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  2. Thanks, Mary! I have one of each kind.

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  3. Witty and informative.

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  4. Thank you, Marly! And I agree with Mary that docs can do a great job building new nipples. I've heard plenty of stories (and experienced it myself) where other doctors, in reviewing your medical records, say things like, "Wait, this says you had a mastectomy. There must be a mistake here . . ."

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  5. Great blog, Eve. Doc Scott did a great job with my fipples. I just wish the guy who did the tattoos had not ruined them...

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  6. I have a recon nipple and a spared one. Not a perfect match, but I wanted to keep as much of my original self as I could. The spared nipple still reacts as original which I understand is not always the case. I'm content with the sisters as I can be and glad to feel very whole even with the required alterations of the reconstruction. I had the best surgeons at CRBS. Great subject and one that is important to the decision process, which in my case Eve, your sharing your experiences with me were major in my decision. Thank you. Keep writing!

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