4 Women Get Real About Numbness Post Mastectomy and Regaining Their Confidence
About one in six women diagnosed with early-stage breast cancer choose to remove their breasts with a double (or bilateral) mastectomy, according to a study published by JAMA Surgery. Aside from having cancer, those at a high risk of the disease because of family history or due to BRCA1 or BRCA2 genetic mutations can opt to get a preventative mastectomy, which reduces the likelihood of developing breast cancer by up to 90 percent and 95 percent, respectively. Either way, numbness mainly in the chest area, and sometimes other parts of the body like the arms and shoulders, affects people who undergo mastectomies — and women we spoke to who had these surgeries said the topic isn't talked about nearly enough.
Numbness is one of the symptoms of what's called "post-mastectomy pain syndrome" usually caused by nerve damage, affecting 25 to 60 percent of mastectomy patients, according to The New York Times. Depending on the extent of the surgery, nerves can heal and regenerate overtime, but there are instances where women lose feeling for years. If surgeons don't try to actively keep or restore nerves during a mastectomy, you're going to have numbness — and that numbness ranges.
Shelley Hwang, MD, MPH, chief of breast surgery at Duke Cancer Institute, told POPSUGAR that the degree of numbness occurring post mastectomy has to do with a number of factors "including the extent of surgery, whether reconstruction was performed and what kind of reconstruction, incision placement, and whether the lymph nodes were removed." She explained that if the mastectomy is being done as part of cancer treatment, lymph nodes are often removed, which can cause numbness or nerve sensitivity in the area under the arms.
Anne Peled, MD, who is trained in both breast oncologic surgery and plastic surgery, emphasized that what kind of nerves are cut and how widespread your mastectomy is contributes to loss of sensation. She has adopted a nerve-grafting technique not yet widely used by surgeons called Resensation, which she does alongside her husband, plastic surgeon Ziv Peled. The technique is performed the same time as flap reconstruction surgery (using the body's own tissue for reconstruction as opposed to implants) and, as a term, has traditionally been used for flap reconstruction only. Because Dr. Peled has found a way to implement the nerve-grafting technique with implant reconstruction, she doesn't refer to the procedure as Resensation in her practice thus far, and instead uses "sensation-preserving mastectomies."
While Dr. Peled performs a mastectomy, her husband works to preserve as much of the nerves as possible. Then, while Dr. Peled executes implant reconstruction, her husband uses nerve allografts to reconnect the nerves and provide sensation to the nipples and breast skin. The key is having, as she described it, a "thoughtful mastectomy technique," something that's especially important because many people do experience nerve pain post surgery.
Even just a year ago, Dr. Peled wasn't hearing from women about preserving sensation during mastectomies, but now she'll have a handful of potential patients reach out to her per day. Restoring sensation isn't typically a focus of breast reconstructive surgery and she wants to change that, especially after being diagnosed with stage 1 breast cancer herself in 2017. She opted for a lumpectomy (removal of a "lump" or part of the breast) with oncoplastic surgery, though she knew that many women at a similar stage in their diagnoses were undergoing full mastectomies and those surgeries happened without sensation preservation. "Now that our technology's evolved, now that our awareness of the importance of sensation has evolved, we have these different ways to try to optimize the sensation," she said. It's about giving women more options (especially since breast reconstruction has risen over the years).
When asked about Resensation, Duke Cancer Institute's Dr. Hwang said that she thinks it's an interesting new area of research "and an emerging procedure that is still only offered in a very small number of centers," adding that it is "probably too early to know whether consistent results can be obtained." However, Dr. Peled noted that 80 to 90 percent of her patients get their sensation back in the areas that lost that sensation (namely, in their chests). In a study published last July, 12 of her patients had a three-month followup post surgery with the doctor, and 87 percent of the breasts had preservation in NAC 2-point discrimination, which Dr. Peled said basically is a "woman's sensation to fine touch in their nipples." She and her husband now have data on over 150 breasts that is yet to be published.
How fast Dr. Peled's patients regain feeling depends on the nerve preservation itself. "If you're able to preserve and keep some of the nerves during surgery, it's faster, but when you're actually talking about reconnecting and reconstructing nerves, we really need to be talking about six months to a year and, in some cases, even a little longer," she explained. She also said that if chemotherapy and radiation are needed for someone who is having a mastectomy due to cancer, that can impact how long the nerves take to heal.
While it's essential that people undergoing mastectomies know about their options — and their potential to regain sensation — numbness still occurs. Four women POPSUGAR spoke with who underwent mastectomies (two of whom had nerve grafting done) all experienced, or still experience, some type of numbness. Keep reading for their stories, as well as their tips for how to connect with confidence post surgery. It's a long journey, but understand that it's more than possible. It's absolutely probable.
Meet Bri Majsiak, 26, Healing From a Preventative Mastectomy
After having a procedure planned without any sensation preservation, Bri Majsiak, one of the cofounders of The Breasties, got a nipple-sparing preventative double mastectomy (aka, her nipples and areolas were kept intact) with direct-to-implant reconstruction on June 29 of this year. She actually was a patient of Dr. Peled's and went through with nerve-grafting during the surgery.
It's only been a few months of recovery, and when we spoke to Majsiak at the end of September, she said that she didn't have much feeling in the lower half of her breasts and in her nipples. "I think I still feel a huge adjustment in my body because things are still hurting and feel different," she told POPSUGAR. At that point, she hadn't been as physical or worked out yet.
This adjustment, Majsiak said, "stems from feeling a little uncomfortable with the fact that these scars are very fresh. I definitely feel shock every time I get in the shower or see myself in the mirror." Plus, the compression bra that she wears during the day and while sleeping is the biggest reminder that her chest is still "very medical" and that it's healing. She's slowly beginning to feel more like herself again.
Bri Majsiak Says Going Through Surgery Was a Mental Relief
Majsiak's mom died of breast cancer when Majsiak was 5, and she said that cancer has weighed heavy on her mind the majority of her life. "I always felt threatened by my breasts and my chest," she explained, and due to that, she's had intimacy issues with her chest. "If I felt like something hurt, I wouldn't want to be touched there because I would think there was a tumor there and that I had breast cancer already." Going through with surgery, she said, was a mental relief.
Majsiak's partner was her main caregiver after surgery, and she noted that leaning into better communication with him has been key. She also knows that it's possible to feel sexy again — that's something she's working on — but she admitted, "if I never felt sexy again in my life, that's a small price to pay for knowing that I did everything I could to prevent getting breast cancer and prevent that risk."
When it comes to gaining her confidence, Majsiak is taking it one day at a time and said that she plans on incorporating more movement daily. There have been limitations post surgery, and she's also afraid of being too physical — "it feels like a reminder of this big change that happened to your body, and naturally, we're afraid that our bodies can't do what they used to do," she explained. That being said, once she's over that hump, she expects to feel more at peace with her body and more like herself.
Meet Sarafina Nance, 27, Who Is 11 Months Post Mastectomy
Sarafina Nance received a nipple-sparing preventative double mastectomy with direct-to-implant reconstruction in November 2019 after she'd tested positive for the BRCA2 genetic mutation, and she, like Majsiak, was also one of Dr. Peled's patients. She decided she wanted to go through with the mastectomy because doctors found a benign tumor in her breast at age 25 — that process of getting it biopsied gave her anxiety, and she felt ready to move forward with surgery.
Nance has sensation in most of her right breast and at least half of her left breast, which she said she regained soon after surgery. She recognized the initial numbness for the first time when her boyfriend was helping her put gauze on her wounds. "It feels like you can't understand what's going on with your body and somebody else touching it," she said.
"I think I've been very lucky in that, because I have most of my sensation, my body feels pretty much 100-percent mine," Nance explained. "I have no issues moving through my day-to-day life, which includes exercise and intimacy with my boyfriend, and feeling like nothing has changed."
Sarafina Nance Says Exercise Helped Her Find Normalcy
"No matter how much sensation you have, I think you have to relearn your body and relearn what it's like being intimate with someone with your body . . . and that's scary," Nance said. She and her partner are still exploring what it means to be intimate post surgery, and she described it as a journey they're figuring out together.
Exercise also helped her find a sense of normalcy. "Being able to regain strength and control and flexibility and all of those things is, for me, the most empowering thing," Nance said. And, she's grown to appreciate her body for what it's done for her thus far.
"I think another thing that's really important to me is knowing that my body has showed up for me at every step of this process and learning to love my body because of that," Nance said. Her body got her through a breast reduction in August 2019 to prep for her mastectomy; the mastectomy itself; and a third surgery, fat grafting, in July. So, rather than resenting the changes to your body, Nance suggests cherishing the strength it provides you.
Meet Dr. Simran Malhotra, 32, Who Chose Not to Get Reconstruction
Simran Malhotra, MD, a palliative care physician, received a nipple-sparing preventative bilateral mastectomy with aesthetic flat closure (no reconstruction) in September of this year, as well as a total hysterectomy with bilateral salpingo-oophorectomy. Her mom is a two-time breast cancer survivor, and Dr. Malhotra found out she was positive for the BRCA1 genetic mutation at age 26.
Dr. Malhotra said that she felt like her breasts served their purpose — she was able to breast-feed her two children before going through with surgery — and she knew that they would not feel or look the same with reconstruction. "My breasts do not define my femininity," she said, further adding that she was OK with not getting any nerve preservation or grafting done. "Because this was a preventative surgery, I had a lot of time before surgery to grieve the loss of these special parts of my body," she said of her breasts.
In terms of numbness, it affects where Dr. Malhotra's breasts used to be, her nipples, and the incisions on the sides of her chest. "The strip of skin over my sternum and between my breasts still has full skin sensation," she noted, and the numbness itself does not interfere with daily tasks.
Dr. Simran Malhotra Says Letting Herself Grieve Helped Her Heal
Dr. Malhotra said that she does not anticipate chest numbness impacting her sexually. Due to her total hysterectomy, she went into surgical menopause overnight, and she's instead more worried about that affecting sex. "I have been on a transdermal estrogen patch since surgery and have not experienced any symptoms of menopause, so that is reassuring for my sexual health," she added, noting that she and her husband discussed the anticipated numbness and changes with menopause at length before her surgery.
An important part of coming to terms with her surgery was letting herself grieve, especially beforehand. "I wrote a letter to my breasts, ovaries, and uterus before surgery, ending it by saying, 'Thank you, I will carry on your legacy with the two beautiful miracles you created for our family,'" Dr. Malhotra explained. This was cathartic.
"I would encourage women to pay close attention to what inspires them and brings them joy to cultivate more of that in their life," Dr. Malhotra said. For her, that's gratitude journaling and surrounding herself with a tribe of positive people.
In terms of navigating a flat chest, Dr. Malhotra stopped wearing push-up bras several months prior to surgery and invested in some "sexy lacy bralettes and backless tops" to see what her body would look like. Now, she said she has fun going back into her closet and seeing what clothes work.
Meet Paige More, 28, Who's Almost 4 Years Post Preventative Mastectomy
Paige More, another cofounder of The Breasties, had a nipple-sparing preventative double mastectomy in January of 2017, followed by a separate exchange surgery where she got her implants (she's also planning on doing a revision surgery in the future because of persistent discomfort). She tested positive for the BRCA1 genetic mutation, and she said that she still has numbness in her chest and her armpits post surgery.
"So much information is thrown at you, and your doctors probably will say something along the lines of, 'You'll probably lose sensation,' but you don't understand what that means until you experience it," More explained. "It's like when your foot falls asleep and you touch it and you know that your finger's touching your foot, but you can't feel your finger touch your foot."
More said that for previvors like herself, survivors of cancer, and thrivers (those living with cancer), the biggest hurdle is "trying to separate your physical surgery and your physical body from the emotional trauma of the entire diagnosis and surgery." Though self-acceptance is key, it took going back out into the dating scene and meeting her current partner to really differentiate her emotional scars from her physical ones.
One day More's partner told her that he understood what she went through was traumatic, but that, to him, she is "healed" and a complete and beautiful woman. "We're conditioned to believe that our scars make us different, and different in a way that's undesirable or unworthy of love or ugly," she noted. "And to know that they actually can make you beautiful, not in spite of, but because of, who you are and what you've been through is such a gift. So that was life-changing for me and something that I'll never forget."
A Tip From Paige More For Reconnecting With Your Body? Get Naked
For More, finding her confidence and sexuality again wasn't easy, and there are still some everyday activities that are not what they used to be. But she's very open about the process of reconnecting with her body — here is a list of tips from her:
- Stop comparing your body to what it was before: "When anything really traumatic happens to your body, you want to go back to how you were before, and the reality is you're forever changed," More said. "You have to find a way to merge who you were with who you were meant to become. Once you find that, you stop comparing."
- Find a community: More was able to feel empowered to regain confidence by being with her fellow Breasties, many of whom went through similar surgeries.
- Rip the Band-Aid off when it comes to dating: More describes herself as a go-getter and said that though she felt almost "unworthy," she had worked so hard to get comfortable with her body on her own that she needed to push herself to take a chance with other people. "I learned that if you own who you are and you own your story and you own your body and you own your scars, people do not have a choice but to accept you for who you are." Essentially, she said, you're teaching people how to treat you.
- Find new ways to enjoy your body: More doesn't feel the same sexually, but she said that one of the most crucial lessons she's learned over the years is that she still deserves pleasure. Start slow, she said. Light a candle, put on some sensual music, get body oils, and experiment with what feels good, she advised.
- Spend time naked: More said seeing yourself in the mirror and really examining your "new" body is helpful. "Look at your body and say nice things out loud," she suggested.
More stressed that reconnecting with your body in the face of numbness, and post surgery in general, is a long process. "This is the rest of your life that you have, so it's a marathon," she said, "and don't expect to just fall in love with your body overnight. It takes time, and you have to get to know your body again."
Editor's Note: At POPSUGAR, we recognize that people of many genders and identities have breasts and ovaries, not just those who are women. For this particular story, the experts we talked to and research we cited generally referred to people with breasts and ovaries as women, and those we interviewed regarding their surgeries all identified as such.