Do Sensation-Preserving Mastectomies Really Work?

Many people who get a mastectomy are surprised and distressed to find that afterwards they have little to no feeling in their chest. The nerves that provide sensation to the breast and nipple are cut or damaged when the breast tissue is removed, if the surgeon is doing the surgery in the traditional way. This can result in permanent chest numbness and in some cases pain from nerve damage.

“Loss of sensation is one of the most overlooked and life-altering consequences of breast cancer surgery. It’s not a minor side effect,” says Lucy Maria De La Cruz, MD, chief of the Breast Surgery Program at MedStar Georgetown University Hospital in Washington, D.C.

“When your chest is numb, you can’t feel your children hug you. Your chest can get accidentally burned and you won’t feel the heat. And you can’t feel intimate touch, which can affect sexual arousal,” she says.

One Breastcancer.org community member who was diagnosed with early-stage breast cancer at a young age was surprised by the loss of feeling: “I wish someone would have told me I would lose sensation in my breasts and talked more about the sexual side effects I would face,” she says.

Recently, doctors and researchers have been paying more attention to sensation loss and trying to find ways to prevent it. Starting in 2018, some surgeons began using new techniques to preserve and repair sensory nerves in the chest during a mastectomy or a delayed breast reconstruction surgery. They found that, for some, the techniques could successfully restore sensation in the breast area and nipples and prevent chronic pain from nerve damage. Now, a growing number of people are seeking out sensation-preserving mastectomies — also sometimes referred to as nerve-sparing mastectomies.

If you’re considering getting a sensation-preserving mastectomy, it’s important to know that it’s a newer option that is still being studied and refined. And among surgeons, there’s some disagreement about how well it works.

The biggest question surrounding sensation-preserving mastectomies, according to experts, is whether they help restore enough sensation. Some surgeons feel that these procedures aren’t consistently effective enough to recommend to all the patients who might be candidates.

“I think it’s important for patients to have clear expectations and to understand that they may not retain or regain sensation [after a sensation-preserving mastectomy],” says Mediget Teshome, MD, MPH, FACS, chief of breast surgery and director of breast health at UCLA Health in Los Angeles. “I discuss this with my patients and if they understand this limitation and are motivated to try it, I don’t think there is a downside.”

Others are concerned that effectively sparing nerves could potentially mean leaving more breast tissue behind during the mastectomy, which could raise the risk of breast cancer recurrence. It’s possible that some surgical teams leave behind more breast tissue in the interest of preserving sensation than others do. But there haven’t been long-term studies yet looking at recurrence rates in people who had sensation-preserving mastectomies because the procedures are so new. But this seems to be a more minor concern overall, with most surgeons saying that they consider sensation-preserving mastectomies to be safe. 

“I personally think it’s safe, since we only preserve tiny nerves that are one to two millimeters in diameter and only if the tumor is far from the nerve,” says Tarek Zaghloul, MD, PhD, a breast surgeon and assistant professor of surgery at the University of Texas Health Science Center in Houston. 

De La Cruz agrees, saying that surgeons who do sensation-preserving mastectomies are careful not to leave breast tissue or tumor behind: “To me, the most controversial thing is: why aren’t we offering this to more patients? We reconnect nerves when patients have surgery for cancer in other parts of the body.”

 

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More breast and plastic surgeons are getting trained in how to do sensation-preserving mastectomies, but the procedures aren’t widely available yet.

Where they are available, many people who are getting a mastectomy are candidates for them. Whether or not the surgery’s an option for you depends on the location and stage of any tumors in the breast. When the cancer is close to the nerves, those nerves can’t safely be preserved.

The surgery’s most commonly done in people who are getting a nipple-sparing mastectomy and breast reconstruction (with implants or flaps). Usually it’s done at the time of the mastectomy — surgeons say this is when you get the best results. But it can also be done in a separate surgery (typically, a flap reconstruction procedure) up to a year later.

Some people who are getting larger-size breast implants may not be able to have certain nerves reconstructed. This is because a nerve tissue graft (donated nerve tissue used to bridge the gap between two damaged nerve ends) may not be long enough to stretch over larger implants.

It’s possible to get sensation-preservation procedures if you’re going flat, but fewer surgeons have experience with this.

Sensation-preserving surgery is also an option for people who don’t have breast cancer but are getting a prophylactic mastectomy to reduce risk or a gender-affirming mastectomy (“top surgery”).

There are several techniques that may be used during the surgery. Note that you may come across the name Resensation when you’re researching your options. Some people use that term — coined by the maker of the nerve tissue graft — to refer to sensation-preserving mastectomies (“My microsurgeon is performing a procedure called Resensation,” as one Breastcancer.org community member put it).  

Preserving nerves

The surgeons identify nerves in the fatty tissue layer beneath the skin to preserve. These nerves might otherwise have been cut during the mastectomy. Keeping them intact can improve sensation in the chest wall.

Reconnecting nerves

The surgeons reconnect nerves that run through the breast tissue that did need to be cut during the mastectomy. This can be done by either directly connecting nerve ends or, if there’s too much of a gap between two nerve ends, connecting them using a nerve tissue graft.

If you’re getting a nipple-sparing mastectomy, the surgical team can often reconnect nerves that run under the nipple and areola and restore sensation to the nipple, areola, and central part of the breast.

Connecting nerves in a tissue flap

The surgeons connect nerves from an autologous tissue flap (such as a DIEP flap) to nerves in the chest. This is an option for some people who are getting flap reconstruction. It is known as flap neurotization and it can be done with or without the use of a nerve graft.  

There’s no guarantee with these procedures that you’ll regain sensation. But if you do, you should expect it to return slowly — over a period of 6 to 18 months or more. Radiation therapy or chemotherapy, before or after your surgery, can make the nerve regeneration process take longer.   

Anne Peled, MD, a plastic and breast surgeon and the co-director of the Breast Care Center of Excellence at Sutter Health California Pacific Medical Center in San Francisco pioneered sensation-preserving mastectomy techniques. Along with her husband Ziv Peled, MD, who is a plastic surgeon and peripheral nerve surgeon, she has done more than 1,500 sensation-preserving procedures.

When they surveyed 151 of their patients who had a sensation-preserving mastectomy and immediate reconstruction with implants (6 to 18 months later), 60% reported “a lot” or “some” nipple sensation and 83% reported “a lot” or ”some” overall breast sensation.

“We’re seeing very consistently that most people are getting back most, if not all, of their sensation,” says Peled.

De La Cruz says she tells patients in her own practice that it takes 18 months to 2 years to tell how much sensation has been restored. “And I tell them that the level that you’ll recover sensation is highly individual,” says De La Cruz. “The outcome is never completely predictable. But the opportunity to regain sensation is meaningful, and many patients feel it’s worth pursuing.”

An added benefit of sensation preservation, according to De La Cruz and other surgeons, is that it does seem to lower the risk of developing chronic pain after a mastectomy (a condition called post-mastectomy pain syndrome).

“Nerves that were cut or damaged and can’t find a track to regenerate sometimes form a mass of scar tissue called a neuroma that’s very painful. But we avoid that problem when we reconnect nerves. It’s a preventive approach,” explains Zaghloul. 

Doctors say that to get the best results after a sensation-preserving mastectomy, you need to do sensory retraining exercises. These are simple exercises that help retrain your brain to recognize and process sensory signals (like those related to pressure and temperature) while the nerves in the chest area are regenerating. Your surgical team should give you information on exercises to do. They may also recommend that you have some sessions with a physical therapist.

Sensation-preserving mastectomy isn’t yet offered by most breast surgeons and plastic surgeons. You can search online to find the surgeons who do have experience and training in sensation-preservation, and you may want to read the threads in online message boards where people share their experiences with these procedures and with particular surgeons.

In most cases, you’ll need to seek out a breast surgeon and plastic surgeon who have experience working as a team. Usually the breast surgeon identifies and preserves nerves, and the plastic surgeon reconstructs them. Keep in mind that even surgeons who perform sensation-preserving mastectomies don’t necessarily do the procedure for all possible candidates or use all of the techniques mentioned above. (For example, some only do sensation preservation in people who are getting a nipple-sparing mastectomy and implant reconstruction).

Zaghloul recommends that you ask about sensation preservation when you’re starting to meet with breast surgeons and plan your breast cancer surgery: “The surgeons that you choose for this surgery should really believe in it and feel that it’s the best way to offer care.”

Sensation-preserving procedures are often billed separately from the rest of the mastectomy and reconstruction surgery. Some insurance companies cover it, but others consider it experimental and won’t cover it — even when they’re covering the mastectomy and reconstruction.

You or your surgical team can try to get prior authorization from your insurance company and to appeal if the initial authorization is denied.

Some people who can afford it end up paying out-of-pocket for just the sensation-preserving part of their mastectomy, which can cost several thousand dollars or more.

If you’re getting a mastectomy and are interested in sensation preservation, it may be worth finding out if you’re a candidate for the procedure and if your insurance will cover it. It’s best to keep in mind that individual results vary and studies are still looking at what, if any, risks come with the procedure.

“It’s part of the natural evolution of medicine that when a procedure is new and different, it’s controversial at first. That was true when nipple-sparing mastectomies, skin-sparing mastectomies, and even lumpectomies were first introduced,” notes De La Cruz. She sees sensation-preservation as one of the advances that can improve some patients’ quality of life after surgery: “These advances help move us away from the idea that breast cancer surgery must be disfiguring."

For some people, sensation preservation helps them feel whole again and helps with the emotional recovery from a mastectomy — even if the results aren’t guaranteed. “Hugs were not the blank nothings that I feared,” wrote one Breastcancer.org community member about getting feeling back after a sensation-preserving double mastectomy. Although she hadn’t recovered all sensation after a few months, she was happy with the results: “Emotionally this was a really, really good thing.”  

 

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This information made possible in part through the generous support of www.BreastCenter.com.