This is what it's like to have breast reconstruction following a risk-reducing mastectomy
Plastic surgeons explain what breast reconstruction options entail, and one patient shares her experience with DIEP flap breast reconstruction.

"My grandfather passed away from cancer from BRCA2 when I was 17 – as I got older, the reality of cancer seemed more real, and I decided to find out what my options were if I had [the] BRCA2 [variant], as well," said 27-year-old Cailynn Madigan. "When my genetic testing came back positive, it felt like a no-brainer for me to have surgery – it was a very hard decision [to have to make], but I felt it needed to happen."

The procedure that Madigan chose to have at the age of 24 goes by a few different names – surgeons typically refer to it as a risk-reducing mastectomy, but you might also hear it called a prophylactic or preventative mastectomy. During it, a breast surgeon removes as much of the breast tissue as possible, in order to significantly lower the patient's chances of developing breast cancer throughout their lifetime. One recent meta-analysis of six observational studies published in the journal JAMA Surgery, for example, found that female carriers of BRCA1 and BRCA2 pathogenic variants who underwent risk-reducing mastectomies had "lower overall and breast cancer-specific mortality rates" than those who did not have the procedure, the study's authors explained. While a risk-reducing mastectomy "is not a perfect risk reduction, it is a significant risk reduction – there will always be some breast tissue cells left behind, because cells exist at a microscopic level," said Alicia Billington, MD, PhD.

Candidates for risk-reducing mastectomy include patients, like Madigan, who have an elevated risk of breast cancer, which can be determined in part by genetic testing.

"The BRCA gene was the first one that we talked thoughtfully about, but there are many genes that we test for now, and we usually ask patients who have a significant family history of breast cancer to retest every five years, because the number of genes we've discovered has changed so dramatically," said Warren Ellsworth, IV, MD.

Other factors, including high breast tissue density combined with a family history of breast cancer, can make certain patients candidates for a risk-reducing mastectomy.

"For some women, genetic testing is normal, but they have a 40 to 50 percent, or sometimes higher, risk of developing breast cancer in the next 10 to 20 years," said Dr. Ellsworth. "Those women are also thoughtfully screened and given their options for risk-reducing mastectomies."

Breast reconstruction with a risk-reducing mastectomy

The decision to have a risk-reducing mastectomy is a complex one, and it comes with another big decision that has to be made – removing your breast tissue leaves behind "a big cavity where that tissue was," said Dr. Billington.

It can be filled with a patient's own tissue taken from elsewhere on the body – a complicated procedure known as autologous reconstruction – or with a breast implant, or with a combination of the two. These procedures are different forms of breast reconstruction surgery, and they are performed at the same time as the risk-reducing mastectomy whenever possible – "we try to do it all at once because we've shown that aesthetic outcomes are better," said Dr. Ellsworth, explaining that usually the plastic surgeon who performs the reconstruction works side by side with the breast surgeon who performs the risk-reducing mastectomy.

Another option is to skip reconstruction altogether in favor of a flat closure, which is what it sounds like – instead of reshaping the breast, excess skin is removed and "a prosthesis can be worn on top if desired, or not," said Dr. Billington. "People might be interested in flat closures for a variety of reasons – sometimes it's personal preference, they like how it looks. Other people see it as the simplest, easiest thing to do."

For her part, Madigan chose to have the most commonly-performed type of autologous reconstruction, which is called a DIEP flap breast reconstruction.

"We build a breast using the patient's own tissue, taken from the tummy – and I use a microscope to also dissect the arteries and veins that give that tissue life," said Dr. Ellsworth. "Much like an organ transplant, we reconnect the tissue to arteries and veins on the chest."

Once the tissue has been integrated into the chest, the results last for the patient's entire life.

"That's a big deal to a lot of young women, and it gives the most natural feeling and looking reconstruction, I think," said Dr. Ellsworth. "It's warm when you touch it because blood is running through it, and I'm a big believer in neurotization, which gives the possibility of sensation return."

What to expect after breast reconstruction

While any risk-reducing mastectomy can result in a loss of sensation to the skin of the breast, with neurotization, "we try to dissect nerves on the tummy and nerves on the chest, and hook them up with a nerve graft," explained Dr. Ellsworth.

It's not going to give you back the potential for "erogenous sensation like what God gave you, but if you could feel the hug of your child or grandchild, and feel the shirt coming over your chest, that is an important thing," said Dr. Ellsworth. "We strive to achieve that whenever possible."

After an autologous breast reconstruction, patients will "go to the ICU for monitoring to make sure that the connection of blood vessels does not get clotted off or kinked, and if that happens, you have to emergently go back to the OR," said Dr. Billington.

Then, patients are sent home with drains in their abdomen and breasts, which they have to tend to for about one to three weeks.

"I told people that I was an octopus because I had eight drains," said Madigan. "You have to physically grab them and stretch them so that blood clots come out [of your body] and go into a ball [on the drain], and then once the ball is full, you empty it out and clean it. I'm not going to lie, juggling those was extremely difficult."

Autologous breast reconstruction "is a complex surgery that takes many hours – you don't go to Joe Schmo Surgery down the street, you know what I mean?" said Dr. Ellsworth.

Madigan said her own surgery took 16 hours, and explained that the recovery "was really tough."

"Most people honestly see it as a boob job and tummy tuck, instead of what it really is," said Madigan. "I struggle with keeping my composure when people say things like, 'Where do I sign up?' because in a way, it feels like you're diminishing what I went through."

Taking tissue from the stomach leaves "what's really considered a lengthy scar from hip to hip, but it's underneath the bikini line – and some people who wouldn't have worn a bikini before actually can now, because they have a flat, tight tummy," said Dr. Ellsworth.

However, that also means the recovery includes a tightness in the stomach "because it is tight," said Dr. Ellsworth. "And it will take time for swelling to go down – that happens dramatically during the first few weeks, then we see changes to the torso over three or so months, so it gets better and better with time."

Madigan said she never realized just how much she used her abs until she temporarily couldn't use them during the initial period of her recovery.

"I was flabbergasted – I couldn't get into bed, I couldn't even put my feet up unless I was in an electric recliner," said Madigan. "It took a good four months before I was standing completely straight without pain, but I had complications."

Madigan had a seroma (a fluid-filled bump) and an infection in her abdomen, "then I went into kidney failure – all these extra things that don't normally happen," she said. "But almost immediately after surgery, it felt like this weight was lifted off my shoulder – my chances of getting cancer are so slim now. I'm reminded of it every now and then, but that worry isn't in my head 24/7 like it was before."

Without postop complications, patients can still expect to have – or be offered – a second surgery for aesthetic revisions, explained Dr. Billington. The revision surgery typically takes place about three to six months after the initial surgery, added Dr. Ellsworth, and might involve liposuction and fat grafting to smooth out the breasts (fat is taken from one part of the body, like the thighs, and injected into the breasts). Or it might be a "breast lifting procedure, revising scars on the tummy to make it look more aesthetic, or sometimes we put implants under DIEPs, if patients want to have a more augmented appearance," he explained.

Breast implants can also be used to fill the space created by a risk-reducing mastectomy on their own, without being paired with autologous reconstruction. This is a relatively simpler procedure, yields symmetrical results and does not involve an operation on the abdomen, so the recovery is usually more straightforward – but it's not the same thing as a standard breast augmentation.

For starters, breast reconstruction with implants requires drains after surgery to remove any fluid that might otherwise accumulate. There is a higher risk of infection because you're putting a foreign object into the body. Aesthetically, you might see ripples from the implant through the skin because you don't have natural breast tissue on top of the implant to help hide it.

Opting for implants over autologous reconstruction

But what if patients ask about the safety profile of implants? And they often do.

"I tell them that most experts describe breast implants as the most studied device that's put in a human body – meaning, there are so many studies and we have proven, for the most part, that breast implants don't cause cancer or autoimmune issues," said Dr. Ellsworth. "I tell patients, 'I trust them in my wife, mother, sister, friend.' I think that's important for a woman to hear. But I also tell them about the risks."

One big one is that you can expect implants to require more surgeries down the road, usually to address complications such as implant shifting or rupture, or capsular contracture, in which a hard, often painful capsule forms around the implant.

"These are not big surgeries, they're not scary surgeries, but many of the women getting risk-reducing mastectomies are young, and implants are not lifelong devices – that's just the reality," said Dr. Ellsworth, who typically advises patients that they can expect to have revision surgery for implants after 12 to 15 years.

Making these kinds of decisions is not something to take lightly, and plastic surgeons who devote their careers to risk-reducing mastectomy and breast reconstruction support patients through the process.

"We talk about the pros and cons," said Dr. Billington. "Sometimes people want to have a family and want to be able to breastfeed, so maybe the conversation is, 'We'll plan on doing this in a few years, and you'll get screenings in the meantime to make sure that, if anything comes up, we can catch it as soon as possible.'"

Surgeons can also show patients before and after images of other women who have had breast reconstruction following risk-reducing mastectomy, to help demonstrate what results and scars might look like.

"Most experts have a thoughtful cohort of culturally-appropriate diverse patients, so we can show patients of different sizes, colors, shapes, nipples saved or nipples not saved – that's really important, so that women can identify with someone that might be like them," said Dr. Ellsworth. "And it's important that they're not all the best results, either – they need to be real results."

Modernizing insurance coverage for breast reconstruction

Of all the things to think about, what should not have to be on the list is whether or not your insurance will cover your breast reconstruction.

"If a patient is high-risk, she should and does have the right to meet with experts and understand her options," said Dr. Ellsworth. "We are working towards legislation that will broaden and protect these women, and allow them access to care if they've received lack of access before."

You can learn about the ASPS' nationwide effort to modernize breast reconstruction coverage – for previvors seeking breast reconstruction following risk-reducing mastectomy, and for breast cancer patients regardless of where they live or what type of insurance they have – through the Advancing Women's Health Coverage Act as well as new or stronger state coverage laws.

To find a qualified plastic surgeon for any cosmetic or reconstructive procedure, consult a member of the American Society of Plastic Surgeons. All ASPS members are board certified by the American Board of Plastic Surgery, have completed an accredited plastic surgery training program, practice in accredited facilities and follow strict standards of safety and ethics. Find an ASPS member in your area.