How To Take Control Of Your Mastectomy Journey

While it is important to know what to medically expect from a mastectomy, understanding the emotional toll of choosing to remove one or both breasts is equally vital. Here, two women share their deeply personal and resilient experiences.
Patient Perspective
Written by Nisha Fernandez
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How To Take Control Of Your Mastectomy Journey

Since 1985, October has served as Breast Cancer Awareness (BCA) Month — a period devoted to educating the public on the disease that, according to the Centers for Disease Control and Prevention (CDC), is the second most common form of cancer in women, regardless of race or ethnicity. Men can also be diagnosed with breast cancer (albeit at a much lower rate), and The AEDITION is devoting much of its coverage this month to BCA, from expert guides to mastectomies and reconstructive breast surgery to powerful patient perspectives and roundups of products that give back.

According to the World Cancer Research Fund, breast cancer is the most commonly occurring cancer in women worldwide and the second most common cancer overall globally, with two million new cases in 2018. In the United States, it is estimated that one in eight women (or approximately 12 percent of the female population) will be diagnosed with breast cancer in her lifetime.

The mastectomy plays a large role in the prevention and treatment of breast cancer, and, while The AEDITION has covered what to expect before, during, and after the surgery from a medical perspective (more on that HERE, calling attention to the emotional toll of choosing to remove one or both breasts is just as important.

Here, two women share their deeply personal and resilient experiences with breast cancer, mastectomies, and breast reconstruction.

Rena, 53

In a six-month period, Rena’s relationship with her body and her breasts completely changed. Her breast cancer diagnosis and subsequent unilateral mastectomy happened very quickly, and she was forced to face her new reality much sooner than expected. Rena made the decision not to undergo breast reconstruction and quickly learned that the subsequent transformation was more emotional than physical.

“The emotional scars take much longer to heal than the physical scars do,” she shares. “The breasts are symbolic of so much. They’re symbolic of feminine beauty and motherhood. Breasts come with a lot of baggage.”

Following her mastectomy, Rena felt deep waves of emotion that resembled grief, pain, and sadness. “There was a point after the mastectomy where I genuinely thought I was losing my mind because I was so sad. I felt so unwell. I was in a lot of pain. I didn’t really want to leave the house,” she recalls. “And now I look back at that and go, ‘Of course.’ Grief is going to come your way, and you can name it. Now if I feel sad, I go, ‘Oh yes, grief. I know what that is. It’ll be gone tomorrow. Just having a sad day.’ I don’t have that, ‘Oh my god, I haven’t just lost my breast, I’ve lost my mind’ feeling.”

“Take an empowered approach and come from a place of strength. You get to decide when you want to take the next steps and how your mastectomy process goes.”
Rena, 53

Rena says the emotional labor was hard, but learning to sit with it and honor how she was feeling was key. She allowed herself to feel her emotions and didn’t pressure herself to feel strong all the time. The driving force of Rena’s recovery came when she stopped letting the situation control her and instead could respond to what was happening around her.

“Take control of what you can,” she explains. “Take an empowered approach and come from a place of strength. You get to decide when you want to take the next steps and how your mastectomy process goes.”

In the moments before her surgery, for example, Rena insisted on walking into the operating room instead of being wheeled in by the nurses. When she got home, she turned all the full-length mirrors in her house around until she decided she was ready to look at her body again.

Her advice to those on a similar journey: “As soon as you get that news, the time is now to start saying goodbye to your breasts and thanking them for everything they’ve meant to you and done for you,” she says. “Quickly get it into your head that it’s your choice to do away with your breasts in exchange for your life. I chose to sacrifice my breast in order to live. I know that’s sad, but you can say, ‘I will be sad to lose my breasts, but I want to live.’”

Tracey, 45

Like Rena, Tracey has been on her own unique journey. Her diagnosis was a long time coming because she knew she was at risk of developing breast cancer and was able to anticipate at least part treatment and recovery. Due to her family history of breast cancer, she was screened regularly for the disease and discovered she carried the BRCA1 gene mutation in late 2010. She decided she would preventatively have her ovaries removed and undergo prophylactic (a.k.a. preventative) mastectomy and breast reconstruction procedures at the same time.

“If I just had a mastectomy, I know I personally would not have felt feminine,” she shares. “Because I was doing elective surgery, I was lucky enough to be able to consider this option and have the two procedures done together.”

Opting for an immediate reconstructive surgery gave Tracey the opportunity to feel like she was reclaiming power over her experience, but, post-mastectomy and breast reconstruction, she experienced a series of complications and side effects that prolonged her recovery time.

“To look at me, you would never know that I’ve had a mastectomy and reconstruction and that I’m going through menopause. I still feel like me.”
Tracey, 45

“A few days after the procedure, my cosmetic surgeon noticed that my right nipple wasn’t going to survive, so I had to be taken back in for surgery to remove it. After about a month at home, I got really sick due to an infection in the right breast, and I had to be rushed to the hospital to get the expander out,” she explains. “All up, I think I’ve had about six or seven surgeries now — this includes having the implants put in and a nipple reconstruction on my right breast, which looks great. My left breast is perfect and I’m happy with it. The right one, not so much. But who is ever happy with the way their breasts look? Even naturally, they’re different. I continue to see my plastic surgeon once a year for a follow-up.”

While her road to recovery was a winding one, she remains upbeat about the results. “I’m not affected by it from day to day. Yes, my breasts are hard, one is quite scarred, and one nipple is bigger than the other, but did I make the right decision? Absolutely, 100 percent,” she says. “To look at me, you would never know that I’ve had a mastectomy and reconstruction and that I’m going through menopause. I still feel like me.”

Tracey’s advice to anyone who is considering a preventative procedure or currently undergoing treatment: “I think it’s a personal journey. Everyone is different and has different feelings and expectations,” she says. “My only advice would be to ensure that you do go through all the options of the procedure, have a great surgeon, and surround yourself with a good support group and care team. Try to be positive as much as you can and reassure yourself with the reason why you’re going ahead with these procedures.”

The Takeaway

Rena and Tracey’s experiences prove that there is nothing linear about breast cancer diagnoses and treatment, but hearing from survivors and those who have elected for preventive mastectomies helps to shine a light on the fact that — regardless of your circumstances — the experience is as emotional as it is physical. While finding board certified surgeons who you trust and feel comfortable with is paramount to your medical care, reading about other people’s journeys and creating a strong support system before, during, and after surgery can help to alleviate some of the emotional burden.

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NISHA FERNANDEZis a contributing writer for AEDIT.

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