For many women, the worry over one day developing breast cancer can be overwhelming, particularly if they have a family history of the disease or elevated risk factors such as a breast cancer genetic mutation. While breast cancer cannot usually be prevented, there are some women, usually those with significantly heightened breast cancer risk factors, who opt to undergo a prophylactic, or preventative, mastectomy. These individuals are often referred to as previvors.
We recently spoke with Nina, a previvor with a unique and inspiring story. Due to her strong family history, Nina chose to have a prophylactic double mastectomy at age 55 before she had the chance to develop breast cancer. This is Nina’s previvor story.
Nina always knew that breast cancer ran strongly in her family. Her mother was first diagnosed with breast cancer at age 57, the same age Nina is now. Nina says that she remembers everything about the day she learned of her mother’s breast cancer:
“I remember my mother calling me to tell me she had cancer the first time. I know where I was sitting and what I was wearing, as well as what my daughter was wearing. It’s vivid in my mind. My mother was my best friend and I was petrified. I was also pregnant with my second daughter and it was devastating for both of us to be apart. I was always worried about my mom.”
After undergoing a lumpectomy, Nina’s mom faced a recurrence of breast cancer in the other breast and a lymph node 11 years later, leading to a double mastectomy. A third recurrence in her breast cavity and neck occurred six years after that, leading to further treatment. Sadly, after years of vigilant screenings, the cancer returned for the fourth time another six years later, this time as metastatic disease, ultimately leading to Nina’s mother’s passing at the age of 82.
In addition to Nina’s mother’s breast cancer diagnoses, Nina’s grandmother died of ovarian cancer, and two of her mother’s sisters also had cancer diagnoses. Nina used this information and her mother’s experience to take action in her own life.
A year after her mother’s passing, and after much research and thought, Nina decided to take preventive steps by undergoing a prophylactic double mastectomy. A prophylactic double mastectomy is the surgical removal of both breasts before cancer has a chance to develop or spread. This type of mastectomy can greatly reduce the chance that a high-risk individual will develop breast cancer.
But there was a small roadblock. Despite the strong history of cancer in her family, genetic testing revealed that Nina did not carry a known breast cancer gene mutation. Nevertheless, Nina was convinced that a prophylactic double mastectomy was the right choice for her. She shares, “I believe in the importance of being an advocate for our own health, especially as women. Too many times, women are not taken seriously about their health.”
But Nina persevered and, along with support from her husband and close friends, she trusted her instincts. “Although my gynecologist and the geneticist felt I made a bad decision, I knew in my heart this was the right decision for me,” Nina says. “I started this journey for myself, knowing in the end that a double mastectomy was the right choice.”
Although Nina faced some complications after surgery that led to a long recovery time, she was grateful for her decision when her gut instincts were proven correct. After surgery, Nina’s pathology report showed that she had clusters of atypical lobular hyperplasia in her right breast. These abnormal cells are found clustered within the milk-producing lobules of the breast and carry a high risk of developing breast cancer. “When my tissue samples came back, the pathologist told me I dodged a bullet,” Nina shares. “I was very close to getting cancer in my right breast.”
Now, feeling healthy and strong, Nina is determined to encourage others to take charge of their own health through self-advocacy. She wants her three daughters—and all women—to be their own advocates and trust their instincts when it comes to their bodies.
“We have this wonderful one life, and we need to do all we can to help ourselves—even when it’s difficult,” she advises. “As women, we are sometimes afraid of ruffling feathers, and we need to get past that.”
Nina acknowledges that every woman’s journey is different, and she doesn’t expect everyone to make the same decision she did. But what she does know is that taking control of her health may have saved her life.
“My breasts did not make me who I am. My people make me who I am. How I choose to go through life, my relationships—these are the things that make me who I am.”
National Breast Cancer Foundation is here for you as you navigate a breast cancer diagnosis. Visit our website to learn about NBCF breast cancer support groups, obtain free educational resources, or find a patient navigator in your area.
The information in this blog post is not intended as medical advice and reflects Nina’s personal experience and opinion. Always consult with your care team about options and decisions regarding your healthcare.
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