Comedian Tig Notaro has been known to remove her shirt — and keep it off — while performing on stage.
Notaro had surgery without reconstruction after being diagnosed with bilateral breast cancer in 2012.
“I think it’s funny that I take my shirt off,” she told Vogue last year. “I think it’s funny that I don’t acknowledge it. I think it’s funny to talk about air travel while my scars are on display.”
Before the breast cancer awareness movement, mentioning breast cancer was considered by many to be taboo.
Now Notaro, star of the Amazon Prime series “One Mississippi,” which is based on her life, is taking on the stigma of mastectomy.
She’s not alone.
It’s not just the scars
Melissa Jacobs, 51, of Ohio, was diagnosed with stage 2 triple-negative breast cancer in 2013. Like Notaro, she had a bilateral mastectomy without reconstruction.
Would she ever consider taking off her top?
“Absolutely. I don’t have breasts anymore, so there’s no reason not to, but my family and friends tell me I’m not allowed to do that,” she said in an interview with Healthline.
Jacobs said she does sometimes take off her shirt without covering herself with a gown during a medical appointment, a move that has caused an intern or two to turn a little red.
“Other than at a doctor appointment, I don’t do that. I wouldn’t do it in mixed company,” she explained.
Jacobs didn’t originally plan on getting prosthetic breasts. She waited almost nine months after surgery to get them, and that was because of her niece’s upcoming wedding.
“I was pressured to get them. Most of the time I don’t wear prosthetics, but if I wear a dress or something fancy, I do,” she said.
While she’s comfortable in her own skin, she said there’s definitely a stigma.
“People in my support group talk about this more than anything else. Some talk of being deformed. There are a few women who are several years out from surgery, but their husbands still haven’t seen them naked yet. It bothers them much more than it does me,” Jacobs explained.
Read more: Early stage breast cancer patients should think twice before opting for mastectomy »
Breast reconstruction can leave scars, too
Christine Handy, 46, of Florida, learned she had stage 2 triple-positive breast cancer four years ago.
She had a lumpectomy, followed by mastectomy, and string of reconstructive surgeries.
“I would absolutely take off my top,” she told Healthline. “I have posted photos on my Instagram that show the reality of mastectomy with reconstruction.”
Handy is the author of the book, “Walk Beside Me,” a fictional depiction of her illness and recovery.
“I have a scar that looks like a large “X” on the top of my breast. That bothers me a bit because I imagine the doctors cutting me open and digging out my breast tissue,” she said. “It’s so obvious where they cut me that it’s hard for me to see it differently right now, and it’s hard to look in the mirror, but only for that reason. Once that scar settles down, I will feel much more settled in my soul. I have had 17 surgeries in the last five years. That image of my breast with the big X is unsettling. But I love my breasts now.”
Handy has sympathy for women who feel the stigma.
“I was one of them. I understand it and empathize. I had to go through a lot of emotional changes to redirect that stigma and shame I felt,” she said.
Challenging the stigma
Jacobs shares a few thoughts about the stigma.
“I think if a woman wants to, and she doesn’t have breasts, there shouldn’t be any reason not to go without a shirt in the appropriate time and place. Just like if you go to the store, you don’t want a man going around without a shirt either,” she said.
Jacobs spoke of images of women postmastectomy who adorned their chests with tattoos. The images have frequently been removed by social media sites.
“We should quit focusing on women’s breasts as anything other than a body part, no different than any other body part. So many women in my support group are absolutely traumatized and that’s just not right,” she continued.
Handy said she’d love to see a large picture of a group of women with no tops on.
“We aren’t deformed. We are stronger, more unique, and just improved versions of our old selves,” she said.
Read more: Treating breast cancer without chemotherapy »
Health and cosmetic considerations
Dr. Andrew Salzberg, chief of the division of plastic surgery at The Mount Sinai Health System in New York, said patients who forgo breast reconstruction complain that their scars tend to be wider and longer.
“In general, studies have shown that the patients do not look or dress themselves in the mirror,” he told Healthline in an email. “They tend to be uncomfortable with themselves and the scars.”
Salzberg said that almost all women are candidates for immediate breast reconstruction.
“Many patients do regret the fact that they did not do an immediate breast reconstruction and do come in for a consultation,” he said.
Salzberg explained that techniques have improved a lot over the past 15 to 20 years. Surgical scars are smaller and heal better.
Dr. Jane Kakkis, medical director of breast surgery at MemorialCare Breast Center at Orange Coast Memorial Medical Center in California, agrees.
In many of her patients where the original nipple can be used, no one can tell they’ve had a mastectomy and reconstruction.
Mastectomy and reconstruction options and techniques vary according to individual circumstances.
Prophylactic mastectomy is performed to reduce the risk of developing breast cancer, not because the patient has cancer. This is sometimes done in women who carry BRCA gene mutations and are at high risk of breast cancer. In these cases, it’s often possible to preserve the nipple and leave minimal scarring.
When cancer is present, that’s not always possible.
In an interview with Healthline, Kakkis said much depends on the surgeon.
“I have seen videos and documentaries posted online where there’s a big horizontal line and very visible surgical staples or clips. It looks terrible when that heals. We don’t do that kind of closure,” she said.
For patients who have keloids (growth of extra scar tissue), she said radiation can help reduce them.
Kakkis said that her patients who proactively choose not to do reconstruction are generally satisfied.
Of those who have second thoughts, she said it’s more about the missing breast or asymmetry than it is about scarring.
“Some patients who thought they’d be OK with one breast missing really weren’t. They’d look in the mirror and cry,” said Kakkis. “Prosthetics only work to a certain extent.”
Many women wear one or two prosthetic breasts without a problem. Others find them uncomfortable or too limiting when it comes to clothing.
“In my patient population, fear of waking up with a missing breast is the sensitive part,” said Kakkis.
“People identify breasts with sexuality, femininity, and other things in addition to being part of the body. They don’t want to look deformed. I don’t have a lot of patients who don’t want reconstruction. When you have one breast removed, the mirror is a constant reminder of cancer,” she said.
When you’re facing mastectomy
If someone is considering mastectomy to reduce their risk of recurrence, Kakkis said the focus should be on treating the cancer first.
“Stay as strong and healthy as you can until you’re cancer free. Then you can discuss removing healthy tissue for risk reduction,” she advised. “We counsel people extensively about risk reduction mastectomy. In many cases it’s not medically necessary and we can often achieve symmetry without removing both breasts.”
Kakkis said the decision is an individual one and should be based on the potential health benefits.
In her practice, she’s seen cases where a lumpectomy is the appropriate treatment. The patient may even be on board with it initially.
“Then friends and family members tell them they should have both breasts removed and scare them so much they change their minds. This is more common than celebrity influence,” she said.
Kakkis said once family members convince a patient to do it, it’s hard to talk to them about their own cancer and the risk of recurrence based on mastectomy.
As someone who has been there, Jacobs has a few words of advice.
With so many healthcare decisions to make, she cautions women not to feel pressured into reconstructive surgery.
“A lot of people do. But there are many women who have issues from the reconstruction surgery,” she said.
Jacobs doesn’t go to great pains to hide her scars. She believes having the double mastectomy, rather than a single, helped her deal with the way she looks.
“There are times I look at the scars and it’s a reminder, but not something that really upsets me. Especially now, almost three years out,” said Jacobs.
Handy advises patience.
“I am very impatient and I realize that is a lot to ask. But with time, patience, and unity, the stigma can change. I truly believe any woman who has conquered cancer and mastectomies should be filled with tremendous pride,” she said.