The sense of loss women feel after losing one or both nipples post-mastectomy is hard to describe, but perhaps this sums it up best: “Without a nipple, a breast isn’t a breast—it’s just a mound,” says Dr. Joshua Levine, a natural breast reconstruction surgeon in New York City.
That’s why nipple reconstruction can have a huge impact on the emotional-recovery process of mastectomy patients, say experts like Dr. Anastasia Bakoulis, assistant professor of surgery at Stony Brook School of Medicine’s breast center.
Her research suggests that about 90 percent of women now opt for breast reconstructions after mastectomies (up from just 10 percent in the 1980s). Nipple-sparing mastectomies are a choice for some, depending on the specifics of the cancer, but others are limited to options like tattooed-on nipples, reconstructions built from, say, leg tissue, or prosthetics that need to be reapplied for each use.
Research backs up the fact that nipples play a key role in the emotional-recovery process: One recent study, for example, found that women reported significantly higher levels of psychosocial and sexual well-being after a nipple-sparing mastectomy, compared to a total mastectomy.
“The nipple restores a sense of normalcy and health to a woman,” says Levine. “It can help her leave the memory of surgery and disease behind her.”
For patients who can’t keep their nipples, reconstructed, tattooed, or prosthetic options can greatly improve their quality of life. “I’ve seen women who have refused to remove their bras in front of their husbands for years that have no problem whipping off their tops to show off their marvelous breasts today,” says Friday Jones, a tattoo artist who does post-operative tattooing. “It’s like they finally recognize themselves again.”
Here, five women who have undergone post-mastectomy breast reconstruction share how they dealt with the loss of their nipples—and how it impacted their lives. —Amber Brenza
‘Getting my nipples surgically reconstructed was the one part of this process that felt like it was for me.’
“I was only 25 when I was diagnosed with invasive breast cancer, so everything about it—from the diagnosis through my recovery—was a total shock.
“I had a life-threatening diagnosis, so at the beginning, I was so worried about surviving that I didn’t care at all about losing my breasts, much less my nipples. Having a mastectomy was something I needed to do to live, so I did it.
“I chose to have reconstruction surgery for both breasts shortly after my double mastectomy, but I had to wait several months for my previous surgery to heal before I could have nipple-reconstruction surgery—it ended up being three years between my first surgery and when I had my nipples done.
“I was really excited to get the surgery—seeing my new breasts with no nipples was just too weird. But I had to make a lot of decisions I never thought I’d have to think about—like how far I’d want my nipples to stick out.
“My surgeon used grafts of my own skin from the inside of my upper thigh for the nipple reconstruction. It was incredibly painful—I couldn’t walk for weeks afterward—but totally worth it. The skin from my thigh gradually darkened on its own into the areolas, and the nipples themselves were created by a series of incisions and tucks in the skin and fat.
“When I finally saw my new nipples after the bandages came off, I immediately knew I’d done the right thing. Even though there was a lot of healing to do still, I felt like myself again.
“Since my nipple reconstruction, I’ve ended up talking about them a lot. I’ve had conversations about my post-cancer nipples with female acquaintances who were curious about my reconstruction process, I’ve shown them to women who were about to go through their own breast-cancer battle, and I’ve even had to convince more than one well-meaning mother that, no, I really couldn’t breastfeed my child, even though I technically had nipples.
“These days, I’m super-happy with how my breasts and nipples look; the reconstructive surgeries have given me a lot of peace.
“The nipple reconstruction was especially gratifying, as it was the one surgery I did just for me. Every other one was because I didn’t want to die, or didn’t want my body to be so messed up. It felt wonderful after years of my life being in the control of the medical community to make a decision that was purely mine.” —Mary Smith, 42, diagnosed at 25
‘My fake nipples look better than my real ones ever did.’
“I have a long family history of breast cancer, so I decided to get tested. Sure enough, I have the BRCA2 mutation. So in 2017, I chose to have a preventative double mastectomy, followed by reconstruction.
“At the time, I was told I was a good candidate for nipple-sparing surgery, where they keep your original nipples and reattach them to your new breasts, but that it would involve one extra surgery. I think everyone was surprised when I told them not to bother. Unlike a lot of women, I never had any real attachment to my nipples. In fact, I had always thought they were too big and looked kind of weird.
“Even though I felt no emotional attachment to my original nipples, I wondered if I’d look down after the surgery and feel upset that they were gone.
“I didn’t miss the old nipples at all, but I wanted to look whole again, and I wanted my breasts to look as natural as possible. So I decided to have nipple-reconstruction surgery.
“I chose to go down a few sizes—from a 34DDD to a 34D—so I knew my boobs were going to look different. The surgeon created new nipples out of little flaps of skin. Then, a few months after that, I got tattoos done on the new nipples to make them look more realistic. My tattoo artist even added little bumps to mimic the glands women have on the areolas.
“They look so good that my doctor forgot they weren’t real for a minute at my checkup.
“Ultimately, I couldn’t be happier with my decision. The one downside is that I don’t have any sensation in my nipples. I do miss feeling aroused there, but my breasts look amazing—better than they did before the surgery.” —Maggie Gaines, 45
‘I’m not sure if I’ll reconstruct my nipples at all.’
“My experience losing my nipples to breast cancer is hard to put into words.
“I wasn’t a candidate for keeping my nipples, because of the type of cancer I had, and I went through a real grieving process for them—it felt like I was losing an essential part of my femininity.
“After I woke up from the mastectomy surgery, I was in so much pain, and all I could see were the drains and expanders and bandages—my body looked like a medical battlefield.
“At first, it was gut-wrenching, but as I looked at the scars seared across my chest, I realized how strong I really am and that the scars where my nipples used to be were just one more sign of how I’d kicked cancer’s ass and won. That, to me, was worth way more than keeping my nipples.
“After my mastectomy, I had several breast-reconstruction surgeries, and currently, I don’t have any nipples—I’m not even sure if I want them at all, tattooed ones or reconstructed ones.
“This surprises people, but I don’t feel like I need nipples to be sexy. Real men—the kind worth having around—are just happy you’re alive and won’t care about the no-nipples thing.
“Besides, I’ve had a lot of fun trying on ‘new’ nipples—using pepperonis, whipped cream, cherries, peach candy rings. For me, keeping a sense of humor about everything has been one of the most important parts of my recovery.
“I also have two daughters who may or may not have the same breast cancer gene I have. I want them to know that nipples and breasts are feminine and sacred—but when it comes to cancer, it’s not about saving your breasts, it’s about saving the brave, badass woman underneath them.” —Brooke Parker, 31; diagnosed at 28
‘As soon as my nipple prosthetics arrived in the mail, I couldn’t wait to try them on.’
“There are four generations of breast cancer in my family, so in 2015, after finding two precancerous growths, I decided to have both my breasts removed as a preventative measure.
“I opted for a double mastectomy immediately followed by reconstructive surgery. One year after my mastectomy, I got the final surgery to put my breast implants in, and three months after that, the soonest I possibly could, I had nipple-reconstruction surgery. Unfortunately, it didn’t work at all.
“The surgery didn’t take, and the new nipples totally flattened back out and looked strange—which can sometimes happen after reconstruction, I was told. My surgeon tried to tattoo them so at least the color would give the appearance of nipples, but they just didn’t look real.
“I was devastated. I felt so unattractive that I refused to take my top off during sex and cried to my boyfriend about how awful I felt. I had no self-confidence. Finally, I went to a tattoo artist and had 3-D tattoos done over the ones my surgeon had done. These turned out a lot better, but as great as the tattoos were, my nipples still didn’t stick out at all from my breast, so they didn’t look real.
“Then, I was searching on the Internet one night and came across Pink Perfect, a company that makes prosthetic nipples for women. They had a bunch of different style, size, and color options so I could find a pair that felt right for me.
“As soon as they arrived in the mail, I couldn’t wait to try them on. They attach with a removable adhesive, and once I stuck them on, they felt totally natural. I ran to my room and put on a tight T-shirt. When I saw my nips poking out through the fabric, I was overjoyed. I don’t think I’ve ever felt more beautiful than I did in that moment.
“The nipple prosthetics look unbelievably real. When I went to my follow-up appointment with my plastic surgeon, neither my doctor nor the nurses realized they were fake at first. Now, I wear the prosthetic nipples all the time—to the gym, out running errands, and, yes, during sex. They change my overall look and give me so much more confidence. They’re life-changing.
“I’m really happy with my look now, and my health is great. I even found out after my surgery that one of my breasts really did have breast cancer, and I am so lucky we caught it that early.” —Dana Reinke, 45, diagnosed at 42
‘Doctors can’t even tell my 3-D nipple tattoos aren’t real.’
“I’ve had breast cancer twice. The first time, we treated it with chemo and radiation. When it came back two years later, I decided to get a double mastectomy, immediately followed by reconstruction surgery.
“I wasn’t able to do the nipple-sparing surgery on the side with cancer, but I was told I could keep the healthy nipple if I wanted to. I opted to have both removed because I didn’t want them to be mismatched.
“The first time I saw my breasts after the implant surgery, which followed my mastectomy, I remember thinking how good they looked…except for the lack of nipples. It was a huge shock to see two large, oval-shaped scars where they should have been.
“Honestly, losing my nipples was one of the hardest parts of my cancer. Every time I felt cold or aroused and my nipples didn’t react, it was just another reminder of how much I’d lost to this disease.
“I was desperate to feel normal again, so a year after my breast-reconstruction surgery—as soon as I was healed—I decided to have nipple-reconstruction surgery. My surgeon was a genius, but I was not prepared for what I would see post-surgery—my new nipples looked like raw meat. They were so red and inflamed and were covered in stitches. I’m not sure what I was expecting, but they looked terrible at first.
“Caring for my new nipples was also lot of work. Every day for weeks, I had to put on ointment, cover them with bandages, and then try to figure out a decent outfit I could wear without needing a bra, since I wasn’t able to wear one during the recovery period. It was overwhelming, and even worse, I still wasn’t thrilled with how they looked when they were healed.
“They didn’t look like ground meat anymore, but they still didn’t look real. The areola was too big, and the color was lighter than the surrounding skin—not darker, how nipples typically look.
“About a year later, I decided to get my reconstructed nipples tattooed. It’s unbelievable how realistic the tattoos look. The artist corrected the coloring and added details like shading and dots that look exactly like real nipples. In fact, the last time I went in for a checkup, neither my dermatologist nor my gynae realized they weren’t real.
“Today, I wouldn’t change a thing about my nipples. And interestingly enough, my choice to get both nipples removed turned out to be a life-saving one: When the pathology came back on the ‘healthy’ nipple, I found out I had a second cancer on the other breast. So now when I look in the mirror, I’m both happy and healthy.” —Jana Muntin, 44, diagnosed at 40
Special thanks to Dr. Oren Lerman, for his consultation services.
This article was originally published on www.womenshealthmag.com