Breast cancer is a devastating disease that affects so many people. The statistics speak for themselves: Approximately one in eight American women will be diagnosed with breast cancer in her lifetime. This staggering number means it’s inevitable that breast cancer is going to touch all of our lives—ourselves, our sisters, our mothers, or our friends.

This is why breast cancer awareness—being mindful of the various factors before, during and after treatment—is so important. First and foremost: curing cancer is crucial, however, even when cancer has been cured, there is still a person who lives on. And that is where breast reconstruction comes in. “Once you have become healthy, it’s vital experts also help women rebuild their lives and to do so, they need to rebuild their senses of self and rebuild their identity,” says Lara Devgan, MD, MPH, a board-certified plastic and reconstructive surgeon in New York City and Chief Medical Officer (CMDO) of RealSelf.

For Devgan, her one in eight is her mom. “It was a profound experience to watch her go through breast cancer as well as through breast reconstruction,” she says. “I had the opportunity to witness first hand how curing cancer saved her life but undergoing breast reconstruction, for her, really made her feel as if she put her life back together. For my mom in particular, she felt that that was a way to put her disease behind her. In a way, it closed that chapter and allowed her to shelf it so she was not walking around feeling like she was a victim because she wasn’t. She was a survivor.”

 

Being able to make the right choice for you

Devgan explains that one of the reasons reconstruction can play such an important role in a survivor’s post-cancer story is that breasts are more than an organ. “Not only do they sometimes cause cancer but they also, for many people, can be part of their identity of femininity,” she notes. “They can be gender affirming or not gender affirming. They can be a sexual organ. They are a source of nutrients for children if you decide to breastfeed. There’s so much wrapped up in the breasts that whether or not breast cancer survivors decide to take the path to reconstruction is quite complicated.”

To make those decisions, it’s crucial for us as a society and as a medical community, in particular, to give women appropriate options. “After you have your treatment addressed, and you’ve been taken care of from a cancer standpoint, the next question is What do I do next?” says Devgan. “Typically, when it comes to reconstructing the breasts, there are three options, each of which will be dependent on your particular cancer journey, the type of treatment you received such as the presence or absence of radiation or chemotherapy, as well as your tissue type and end goals.” First is to reconstruct the breast—or breasts—with your own tissue. Second, to do so with implants. Third, is to not reconstruct or ‘go flat’ which is the common terminology often used among survivors. “Regardless of which is chosen, having a conversation about breast reconstruction can be very empowering,” says Devgan. “Even if you decide that you don’t want to go through a reconstructive process at all, the dignity of being able to make that decision for yourself and not have someone else make it for you is very important.”

 

Knowing your breast reconstruction rights

However, many women who are affected by breast cancer, are not aware of the fact that reconstruction is even a possibility after their cancer is cured. It’s estimated that less than half of women even know reconstruction is an option and that fewer than 20 percent undergo breast reconstruction immediately after their mastectomy. “As a plastic surgeon, and a woman myself, I think that that’s unfortunate because it can help to feel in control of a situation that is inherently uncontrollable,” Devgan says.

These statistics are alarming because first off: it’s a woman’s right—by law. The Women’s Health and Cancer Rights Act (WHCRA), which was put in place in 1998, actually requires all insurance companies to cover the cost of breast reconstruction after treatment. And as of October 2016, The Breast Cancer Patient Education Act (BCPEA) was put in place, making it mandatory for medical professionals to inform breast cancer patients that they can undergo breast reconstruction and prostheses and that it’s covered by insurance.

As for why this is happening, the potential factors vary. “Sometimes it’s because—and I must say up front not out of malice in any way—medical professionals, despite the BCPEA Act, may simply stay in their own lane inadvertently creating a communication gap between those treating cancer and those that would connect the dots about plastic surgery options post-treatment,” Devgan notes.

 

Why some women aren’t getting breast reconstruction

Then there can be cases where reconstruction is only casually mentioned by their medical professional. Or maybe a woman picks up a pamphlet in a waiting room but then doesn’t do further research. Both scenarios do not help the survivor fully realize that this is a viable option. Or perhaps because, when it comes down to it, reconstruction is still plastic surgery and she thinks it would be expensive and out of pocket so she doesn’t even entertain the idea or inquire further.

What could also be preventing women from considering reconstruction is that after undergoing the tedious details of their cancer-free journey, they no longer want to deal with any unnecessary medical concerns. And because any surgery, including breast cancer reconstruction, can potentially lead to more surgeries or complications of varying levels, they simply choose to forego it. A 2018  JAMA study surveyed approximately 2,300 women who underwent breast reconstruction from 2012 to 2015 at 11 different medical facilities in the United States and Canada. That study showed that one in three women who do post-mastectomy reconstruction had some type of complication two years post-surgery while one in five women needed to have another surgery.

According to some research and statistics, disparities in breast reconstruction are even more prevalent across racial as well as socio-economic lines. A study published in Cancer Control in November 2017 found that there is significant evidence of racial disparity among post-mastectomy breast cancer survivors and that African American women, in particular, tend to not undergo breast reconstruction. That same study does cite that in general some reasons for women of all ethnicities not to have reconstruction is due to lack of insurance coverage as well as the financial factor, however, it is not deemed the most influential cause. This research also calls out the issue mentioned above regarding the lack of referrals between surgical oncologists and plastic surgeons, which is more prevalent for African American woman compared to their Caucasian counterparts.

Another key question: Is it related to the outcome of their cancer? Because another alarming statistic to take note of is that according to the Susan B. Komen Foundation, from 2011 to 2015, breast cancer mortality was 41 percent higher in black women than in white women. Black women also tend to be diagnosed at a significantly younger age. Or is that not the main factor and in fact, the disparity among racial lines when it comes to reconstruction is because there’s a cultural influence that makes them not want to pursue it? The bottom line is that the answer—or answers for that matter — are not entirely clear. Therefore, continued research and surveys as well as making this a key talking point in the cancer medical community is essential.

Devgan points out that women also need to continue to advocate for their health and wellbeing. Her advice: Ask the questions for yourself and suggest others ask them as well to ensure that the potential for reconstruction eventually becomes as common a part of the breast cancer conversation. “It’s so important that we’re not leaving segments of the population behind,” says Devgan. “In some women’s lives, breast reconstruction can be the secret to allowing women to create the narrative for their own breast cancer journey.”