‘The Fear and Anxiety I Felt Was the Hardest Part of My Mastectomy’
The majority of women faced with a diagnosis are confronted with a crucial decision: whether or not to get a lumpectomy (surgery to remove cancer or other abnormal tissue from the breast), mastectomy (removing the whole breast), or a double mastectomy (removing both breasts). According to a 2017 study, 33 percent of breast cancer patients between the ages of 20 and 44 (and 10 percent of breast cancer patients aged 45 and up) decided to get a double mastectomy in 2012—regardless of whether or not they have cancer in both breasts. In 2004, those rates were 11 and 3 percent, respectively.
Mastectomies in particular can be life-saving surgeries, but for better or for worse, breasts are so deeply tied to identity and self-esteem in American culture that for many patients, losing one or both of their breasts is a lot to process mentally. How do you navigate your relationship with your new body when you're literally just trying to survive—and when your new scars and shape is a constant physical reminder of your cancer battle?
The emotional toll of a changing body
"The worst part of my double mastectomy wasn't the physical surgery, it was the fear and anxiety I felt afterwards," says Deisy Loya, who is 37. She was diagnosed with breast cancer two years ago when she was 35. "In the beginning, I was in denial about needing a double mastectomy," she says. "I told the doctor I only wanted a lumpectomy because I didn't want to lose my breasts." But after going through chemotherapy, Loya says she realized that there was "no way" she ever wanted her cancer to come back. "Even though I was really sad and depressed about losing my breasts, I did it."
Loya says her depression continued after her surgery, too. "I felt anxiety about the future. I'd just lie in bed at night awake, and so sad." Still, she didn't talk to anyone about her emotions at any time during the process; she says she felt the need to appear strong for her son, who was 19. None of her doctors, she says, asked her about her mental health at any point in the process, leaving Loya to feel like she didn't have anyone to talk to about the mental health struggles she was experiencing.
According to Aaron Pinkhasov, MD, the chairman of the Department of Behavioral Health at NYU Winthrop Hospital, "women getting a mastectomy are already primed for some anxiety and depression" because they're dealing with the specter of cancer. And mastectomies specifically come with an additional mental burden—a 2017 study found that depression rates were higher in women who had a mastectomy than post-op patients who did not have breast cancer, and could last about three years after the operation. "This can come with symptoms such as social withdrawal, inability to sleep, and feeling hopeless,” Dr. Pinkhasov says.
Lisa Lurie remembers feeling confused and conflicted throughout her mastectomy process—feelings made more complicated by a rapid treatment timeline. She was diagnosed with breast cancer in 2008 when she was 47. "I had two weeks between that devastating phone call with the doctor saying I had cancer to going in for my double mastectomy, which is when they wanted to do the reconstruction, if I chose to get that done," she says. She says the information overload about the choices she had to make for her health was "overwhelming."
"When I look at the scars, it represents to me the trauma of the treatment, but it also represents my choice to live." —Allyn Rose, preventative mastectomy patient
For some women, "the physical loss of their breasts is a daily reminder of the trauma they went through," adds Alexes Hazen, MD, a plastic surgeon at NYU Langone. It's the trauma of chemo and all its side effects, radiation, waiting rooms, medical bills, trying on bras and shirts that don't fit right, and reassuring family members they'll be okay despite not really knowing. Just a glance at the scars and changed silhouette in the mirror can potentially bring back the trauma of it all.
The scars and physical discomfort are a daily reminder for Loya, too, who had the first part of her reconstructive surgery in July and will have a second surgery where she receives tissue expanders (essentially empty breast implants that are slowly filled with saline over the course of a few weeks to prepare your body for the permanent implants) in six months. Now, she dresses for comfort first while trying to conceal her sunken chest. Her oncologist had recommended that she wear a sports bra every day, but the tightness isn't as comfortable as the bras she used to wear in her pre-breast cancer life. Typically, she wears a loose button down and slacks to make up for the uncomfortable bra, grateful that her job as a medical interpreter allows her to dress casually.
Allyn Rose, 31, now sees her mastectomy scars in a different light. Though she tested negative for the BRCA gene, she has a family history of breast cancer (her mother died of it when Rose was only 16) and so she decided to get a preventative double mastectomy at age 26. (People whose mother, sister, or daughter have had breast cancer are generally considered to be high risk for breast cancer themselves.) Her surgery played out in three phases. "I had the initial mastectomy with these things called tissue expanders, which are basically empty balloons they put onto your chest wall, and then slowly expand them to kind of accommodate room for breast implant. Then, I had a small complication and had to have another surgery, and then finally had my reconstruction," Rose explains. When she looked in the mirror after her reconstruction, she saw the seven scars in her breast area, which she knew would always serve as a visual reminder of what she had to do to preserve her health. "When I look at the scars, it represents to me the trauma of the treatment, but it also represents my choice to live," Rose says.
Grappling with feeling feminine in a new, changing body
For better or for worse, breasts—regardless of the size—are typically considered a marker of womanhood in American culture. There are myriad bras you can buy to push them up to make them more pronounced, keep them in place during a workout, or ensure they're supported so you can go about your day without giving them much thought. But society doesn't prepare breast cancer patients for what it's like to lose their breasts. "Breasts have an associated role with femininity and motherhood; when a woman loses [one or both], she is going to feel different. It's important to acknowledge that, which is why I recommend therapy alongside chemotherapy and other parts of breast cancer treatment,” says Dr. Pinkhasov.
For Loya, her breasts play a major part in what makes her feel like a woman. After her double mastectomy in 2018, she says she felt like she lost that part of her. "After the surgery, I didn't like to look at myself in the mirror or while I was showering," she recalls. "I felt sad about losing my breasts, and anxious and stressed about the medical bills my cancer was causing. But I didn't talk to anyone about it."
Rose says she thought getting reconstructive surgery would eliminate the emotional toll of her mastectomy, but says it's still something that occupies her mind. "I went into it thinking it would be a relatively easy surgery. I didn't realize that even if you have a 'positive' cosmetic result, the impact of losing your breasts [can affect] you as a woman and the way you view yourself," she says. "Right now I'm doing IVF with my husband. I know I'll never breastfeed my children. I don't have sensation in a large part of my breast. I was just talking with a woman who told me she lost all sensation in her breasts [after getting a double mastectomy]. When she gave birth to her child and the doctor placed the baby on her chest, she burst out into tears because she couldn't feel it. I think about that."
While Lurie says she feels at ease in her body now, it didn't happen overnight. "I was at a loss about my mastectomy," she says. "I had a dear friend who was six months ahead of me [in her breast cancer journey], who opted not to get reconstruction. She came over and said, 'I'm going to show you what it looks like,' and she pulled up her shirt and let me see." A few weeks later, the two went bra shopping together. Seeing what another woman’s mastectomy looked like helped Lurie start to feel more comfortable with her own body.
Recovering, inside and out
While many women who have had a mastectomy choose not to get reconstructive surgery, both Loya and Rose say reconstructive surgery was an important part of their mental recovery. In 2014 (the latest year data is available), roughly 40 percent of women who had a mastectomy got reconstructive surgery, according to the Agency for Healthcare Research and Quality, though the percentage has likely risen in the past five years.
"Multiple studies show that the majority of women are happier and feel more like themselves quicker if they do get breast reconstruction," Dr. Hazen says. Unfortunately, many breast cancer survivors who want reconstructive surgery find it too expensive for them to consider. Dr. Hazen says insurance companies are legally required to cover breast reconstruction, but with so many people on high-deductible insurance plans, the out-of pocket costs can be prohibitive. Loya, for instance, says she doesn't have medical insurance, so on top of her cancer bills, a plastic surgeon told her that reconstructive surgery would cost her over $40,000 out of pocket. "I started researching to see if there were any organizations that could help, and that's how I came across the AiRS Foundation [a non-profit that works with doctors to make reconstructive surgery an option for women who would not otherwise have access to it], which not only got the cost down to $23,000 but is also paying for it," she says.
That doesn't mean that reconstruction is required for recovery. Lurie initially decided not to get a reconstruction with her mastectomy, knowing she could opt to get it in the future if she wanted. "Then, I just got busy living my life," she says. "Two weeks after my surgery, my daughter was going to play Maria in The Sound of Music at her school and I wanted so badly to be in the front row. I wanted to focus on living my life."
"Getting cancer is out of control. But you can control where you go from there." —Lisa Lurie, founder of Cancer Be Glammed and breast cancer survivor
In fact, one of the most healing moments for her came from her daughter. "She was 9 at the time and she kept asking to see my chest. I didn't want her to. But she kept begging me and finally I said yes. My daughter had to have surgery when she was an infant, and because of that, she had a scar across her stomach. When I lifted up my shirt to show her my chest she said, 'Mommy, that's not so bad! I have a scar, too. What are you so afraid of?' I thought to myself, 'What am I so afraid of? She was comfortable with me, so in that moment I decided to be comfortable with myself and move on."
Indeed, Lurie says her decision to go flat has given her a sense of freedom. "Some days, I leave the house with no bra at all, and it's nice to be able to do that." Other times, she says she wants to dress with more of a silhouette, so she wears breast forms and shapers. She's also learned other style tricks, like wearing ruffles to give the illusion of a fuller top. "You learn to draw attention away from it if you want to, and I have to say, it feels like a relief," Lurie says.
There are many roads to emotional recovery, which is why Dr. Pinkhasov emphasizes how important it is for women to prioritize their mental health at every stage of breast cancer treatment. There are, he says, pharmaceutical treatments for depression and anxiety available, but it's important to work with a psychiatrist who specializes with breast cancer patients because they know what options won't interfere with the cancer treatment. Some hospitals offer therapy and hold support groups on site, but other support groups include Lurie's own Cancer Be Glammed (an online community for cancer patients with bra, clothing, hair, and makeup tips), SurvivingBreastCancer.org, and the National Breast Cancer Foundation.
"Doctors are obviously consumed with healing, but getting a mastectomy is extremely emotional," Lurie says. "It's important to really address how you're feeling and not bury it. You have to acknowledge what happened to you and make a plan on how you're going to deal with it. Getting cancer is out of control. But you can control where you go from there."
Some good news: breast cancer isn't as fatal as it used to be. And just a reminder, yes, getting a mammogram is important.
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