About 266,120 women in the United States will be diagnosed with breast cancer this year.
Only about 23 percent of women understand all their breast reconstruction options.
But new ideas and techniques are providing more choices.
“More options are now available to patients in the areas of breast reconstruction, including expander/implant or direct implant placement, acellular dermal matrix, autologous flap reconstruction, autologous fat grafting, and oncoplastic techniques for breast preservation,” says Dr. Linda L. Zeineh.
Zeineh, a board-certified plastic surgeon in private practice in California, also serves as section chief of plastic surgery at St. Joseph Hospital in Orange, California.
“Innovative options exist for patients after mastectomy and also after lumpectomy. With genetic testing, more patients are choosing prophylactic mastectomies. The advancements in breast reconstructive techniques allow the patients more of an opportunity to achieve their goals of restoration,” she told Healthline.
Once a rather taboo subject, many women now speak openly about their breast reconstruction — or their decision to “go flat.”
Healthline spoke with five women about the decisions they made, how they feel about it now, and what they want other women to know.
Women’s health journalist Catherine Guthrie spent years writing about breast cancer and knew lumpectomy was the least invasive option.
But the placement of the tumor and relative size of her breast took that option off the table.
Her surgeon recommended a single mastectomy and latissimus dorsi flap reconstruction. That’s a technique using muscle and tissue from the back to reconstruct the breasts.
“I was just so caught off guard by the whole conversation,” Guthrie said. “Fifteen minutes after I realize there’ll be no lumpectomy we’re talking about severing muscles and rearranging them and, by the way, the natural breast won’t match the new one so why not implant that one, too.”
When she asked her surgeon if that muscle was needed, he replied that most women just want to look normal in clothes — they hardly miss it.
Guthrie, author of “Flat: Reclaiming My Body from Breast Cancer,” also has scoliosis.
“I had worked through back issues using yoga and got to this point where I was strong and confident. Suddenly all that was deemed less important than looking normal in clothes. I thought I was being asked in that moment to choose between physical strength and the perception of feminine normativity,” she explained.
“It felt like he was saying I should have reconstruction for other people so I would look normal when other people looked at me. That was shocking and threw me off balance. Even if doctors say it’s a big muscle and you can lose some of it, severing a muscle is permanent. It wasn’t given the weight I think it should have,” she continued.
Guthrie said her thought process revolved around the kind of body she wanted to occupy for the rest of her life.
She chose a double mastectomy without reconstruction. She sought symmetry and balance, which would be helpful for the scoliosis and the yoga. It would also provide freedom from having to wear a bra and a prosthetic breast all the time.
And she’s not shy about saying you can be flat and sexy.
“What makes me feel sexy is being strong and confident and pain free and bringing that to the bedroom. That’s the kind of lover we all want — one who is confident, carefree, and feels comfortable in their own body,” she said.
Guthrie has no regrets about her choices.
“But it’s important in these conversations to acknowledge that you can both be happy with your decision and mourn the loss of your breasts. It’s an amputation. I still miss my breasts and the pleasure of them and the shape of them in clothes,” she said.
Guthrie has full range of motion and is able to do all the things she did before cancer.
“That alone, on a daily basis, makes me so happy,” she said.
Some women choose to have a mastectomy and delay the decision on reconstruction.
Carol Hartman was concerned about the long-term effects of implants. So when she had a mastectomy in 2010, she chose not to have immediate reconstruction.
Her surgeon left her skin loose so the procedure would be easier if she ever changed her mind. To date, she has not.
Hartman, who asked Healthline to use a pseudonym to identify her, said the remaining tissue is especially sensitive.
“That takes getting used to. It really helps to wear a soft prosthesis, even to bed at night,” she explained.
“I’m very happy with my decision not to have reconstruction, though I confess I’ve dithered about it through the years. It was very hard to get myself to go swimming again, as there aren’t a lot of good prosthetic options in swimwear. Other people have to look at me but if it’s a problem for them, it’s their problem. I’m going swimming!” said Hartman.
Uninsured at the time of her mastectomy, Alisa Savoretti waited three years for reconstructive surgery.
“I was 38 at time of my mastectomy, so I would say in my case, as a young woman in her 30s and not yet married, I absolutely wanted reconstructive surgery,” she said.
“When I finally received it I was elated, to say the least. When I looked in the mirror and saw two breasts again with a nipple and areola. I felt that was the moment I was done with my cancer treatment,” Savoretti told Healthline.
She has since founded My Hope Chest, a nonprofit that helps fund breast reconstruction for uninsured and underinsured breast cancer survivors.
“For many women applying to our organization, they say they feel less than whole. After they received their surgery, they tell us they feel whole again and have found closure from the disease in body, mind, and spirit. Getting back to feeling like yourself and closing that chapter is truly the best feeling,” explained Savoretti.
Jamie Kastelic, owner and founder of Spero-Hope, LLC, had a bilateral mastectomy at age 30.
She chose to delay reconstruction until completing chemotherapy.
But about a month after breast tissue expanders were implanted she developed a severe infection that landed her in the hospital. She decided to have the expanders removed and give up on reconstruction.
“I thought I’d have implants and it would be a finish line, that the bad part of my life would be over,” Kastelic told Healthline. “Once I knew I wouldn’t attempt it again, I had to learn how to live with this.”
“To be totally honest, I was lying in bed after the expanders were removed and I picked up my phone and looked at Facebook. There was a picture of a bald girl with a puppy, then another five years later where she had long, blond hair and the puppy was a dog. She inspired me to get out of bed and move forward,” she continued.
Kastelic says she’s totally comfortable being flat and wears prosthetics about half the time.
“I have zero regrets even though reconstruction failed. I never look in the mirror and feel maimed,” she said.
As pleased as she is with her decision, Kastelic knows other women who became depressed when it didn’t work out for them. So she doesn’t push her choice on others.
But she does post pictures of herself online, scars and all.
“If me putting it all out there can help one person, it’s worth it to me. As women, we have to lift each other up,” said Kastelic.
Rachael Ocello was only 21 years old when she had a double mastectomy and immediate reconstruction. Age was a big consideration.
“It was a really hard decision. Having fake breasts was never something I wanted. It took me two months to decide, but I didn’t consider not getting reconstruction. I didn’t want a flat chest, especially in my 20s, which is a really vulnerable time. Being so young and not having breasts would have affected me more emotionally and mentally,” said Ocello.
She opted for silicone implants, which were placed over her muscles. In her case, there was no need for expanders or for fat or tissue to be taken from another part of her body.
Ocello has a few typical side effects such as numbness, tingling, itching, or an occasional sharp pain. Minor back problems resolved once she adjusted to the implants. She’s had no unexpected complications and is pleased with the results.
“It gave me back my sense of womanhood when it kind of got taken away from me. It was the best choice for me and I stand by it,” she said.
Dr. Constance M. Chen is a board-certified plastic surgeon based in New York City.
She uses natural techniques to optimize medical and cosmetic outcomes of breast reconstruction.
“According to the implant manufacturers themselves,” Chen told Healthline, “about 50 percent of women who undergo breast reconstruction with implants will need another operation within seven years after their ‘final’ implant placement. Most commonly, this is due to painful capsular contracture, infection, or rupture. Breast implants also have a 10-year warranty because they are expected to need replacement eventually.”
Any of the surgeries come with the risk of infection, bleeding, and problems healing.
“If flap reconstruction is performed, there can be issues with blood flow to the flap and delayed healing at the donor site. With breast reconstruction, patients may require revisional surgery in order to achieve desired results,” said Zeineh.
Natural tissue breast reconstruction is a more complex but permanent operation, according to Chen.
“It creates living breasts that grow and shrink as a woman gains and loses weight,” she said.
Chen explained there are many factors, such as BMI over 30, smoking, and uncontrolled diabetes, that can increase the risk of healing problems. Cancer itself can increase the risk of blood clots and affect healing.
“There are many ways to set up a woman for the best possible result after surgery, such as mastectomy incision, but many surgeons are not trained to focus on the long-term aesthetic outcome,” said Chen.
She noted that almost all women lose sensitivity in reconstructed breasts, particularly those who have implants.
Chen uses a technique called ReSensation, in which nerves in the new breast are connected with nerves in the chest wall. This is done with donated human peripheral nerve tissue (allograft nerve tissue) to bridge the nerve gap.
“With sensory restoration, it also allows a woman to feel her breasts and truly move on with her life after breast cancer. For women with implant-based breast reconstruction, in order to possibly restore sensation to their breasts they would need to have their implants removed and replaced with natural tissue and ReSensation,” said Chen.
There are also a variety of ways to perform nipple reconstruction.
“This includes moving the patient’s tissue to create a projecting nipple. After healing has occurred, tattooing of the nipple and areola is performed. Patients can also forego surgery and proceed with nipple areolar tattooing to create a 3-D effect,” said Zeineh.
Breast reconstruction isn’t always an option.
“In some instances, women with stage 4 breast cancer who have been in remission for a period of time have been able to undergo breast reconstruction. But it should only be done in consultation with their oncologist. Survival is obviously more important than reconstruction. Some of these women may also not be candidates for mastectomy or lumpectomy,” said Chen.
Zeineh added that lengthy or multiple surgeries may not be in the best interest of patients who currently have unstable medical issues.
Zeineh recommends choosing a surgeon you’re comfortable with and who is certified by The American Board of Plastic Surgery.
“It is important for the patient to be fully informed about her options in breast reconstruction in order to choose the pathway that fits into her life and will achieve the desired outcome,” said Zeineh.
Asked what they want newly diagnosed women to know, all the women interviewed for this story agree that these decisions are intensely personal. They should be made based on what you want for your body. It’s not a decision you should make for anyone else or out of fear of what others may think.
As a journalist, Guthrie has spoken to women who were pressured into getting reconstruction.
Others awoke from surgery with pockets of excess skin for future reconstruction — even though they had chosen to remain flat.
“Some surgeons don’t trust or respect women’s choices. They’re seen as incapable of making solid decisions about their bodies. That is happening. I don’t think they’re necessarily malicious. It’s the cultural indoctrination of paternalism and misogyny in the world of medicine,” said Guthrie.
For the best results, she suggests seeking a surgeon whose primary specialty is breast surgery.
And take your time.
“Often women are met with a sense of urgency to make all these decisions in the first few weeks. Most breast cancers are not that dire. You have a little bit of time to make some decisions and reconstruction is something you can revisit. When it happened to me, I didn’t immediately decide to be flat for the rest of my life. But I put reconstruction on the shelf because I really just wanted to get through cancer, get on the other side, and think clearly about my options,” she said.
“If reconstructing your breasts feels like something that would give you a sense of sexiness and femininity and power in your body to move through the world the way you want to move through it, then by all means have reconstruction. The same with going flat,” said Guthrie.