Science has shown that some breast cancers have a strong genetic component, and thanks to genetic testing, people can now find out whether they carry genetic mutations that increase their likelihood of breast cancer, years before any cancers develop. Angelina Jolie is a famous example; she decided to have a preventative double mastectomy in 2013 after discovering she carried a mutation of the BRCA 1 gene that increased her risk of developing breast cancer to 50-85%, according to Memorial Sloan Kettering Cancer Center. Getting a phone call from a genetic counselor saying you're BRCA positive is a life-changing experience. People who've gone through the process tell Bustle that a positive BRCA diagnosis can have a devastating mental health impact, and that the emotional repercussions may last for a long time.
First, let's define what these mutations even are. BRCA1 and BRCA2 are genes that suppress the development of breast and ovarian cancer in the human body. When these genes become mutated, which happens if either or both of your parents are a carrier for the mutation, your risk of breast and ovarian cancers is increased significantly, according to the National Cancer Institute. Patients with this diagnosis can choose to take steps to prevent a cancer diagnosis, such as having a preventative mastectomy or oophorectomy, or taking hormone therapy.
A diagnosis can have an impact on mental health, experts say. "Initial reactions to this news can vary greatly from person to person," mental health counselor Heidi McBain tells Bustle. "It's very common to feel anxious about what this means for their future. They may also feel depressed and withdrawal from others while they process this news internally. There can also be feelings of grief and loss."
A diagnosis of BRCA1 or BRCA2 genetic mutations can be life-changing, but the people who've had a positive diagnosis tell Bustle that they're often grateful for the knowledge. "Discovering you are a carrier for a BRCA mutation is not the end and does not mean you are damaged in some way," Susan, 27, who was diagnosed two years ago, tells Bustle. "I've decided being diagnosed with BRCA2 will not hold me back from living the life I have dreamed for myself. And it will not beat me."
Here's what seven people want you to know about what happens after a BRCA positive diagnosis.
"When I was between two and three years old, my mom was diagnosed with breast cancer at the age of 41. My aunt Donna was also diagnosed with breast cancer and underwent a double mastectomy and a full hysterectomy, ovaries and all, at the age of 45. At the age of 25, I got the call. I was positive for BRCA2.
"I thought I was prepared for that call. I had grown up hearing about the gene, knowing the day would come when I needed to get tested. Cancer runs in our family. But I found myself unable to speak as I silently cried in the car, my doctor apologizing profusely over the phone. I think part of me always knew I was positive for the mutation, but I still couldn’t swallow the reality.
"So far, all of my testing has come back clean and negative of any growths or questionable results. But the first time I walked into the breast specialist office and looked around, to realize I was the youngest one in the room, I cried. My dad had passed away about a month after discovering I was a carrier for BRCA2. All I wanted was a parent, someone, to be there with me. Having to learn to navigate the healthcare system alone, while grieving the loss of a parent, is not fun.
"There are times where the anger and resentment towards other young people who do not have to go through these procedures and worries consumes me. I am so grateful for a strong support system, including my grief therapist. She and I developed a strong therapeutic relationship over the first year of my diagnosis and the death of my father. She taught me skills to cope with heavy emotions and how to listen to my body when I need a break."
“When I found out I had the BRCA gene, I was scared, sad, overwhelmed, and extremely anxious. For the first few days I let the diagnosis consume me. I didn't know much about the gene other than that my grandmother passed away from breast cancer, and I was high risk for both breast and ovarian cancer. I wanted to learn more and find a community of women who also had the gene that were sharing their stories so I didn't feel so alone
"After seeing a genetic counselor I felt lucky that I found out early in life, because I am able to plan accordingly. I feel fortunate to know that I have options, unlike my grandmother, and I want to help others learn more about prevention and early detection."
"My parents adopted me when I was 10 months old. Over the years, I thought about whether I was at risk for cancer, but I never really pursued learning more. After I learned information about my birth family that suggested a history of cancer, I realized I didn’t want to wait for the other shoe to drop.
"About two weeks after taking the test, my results came in. My genetic counselor told me that there were two genetic mutations that came back positive: one for the BRCA2 gene and one for CHEK2, genes that are strongly associated with breast and ovarian cancer, respectively.
"While being confronted with this diagnosis and decision was extremely overwhelming and scary at the time, I knew that taking preventive steps was the right choice to be present and healthy for my family in the long run.
"Since my BRCA2 and CHEK2 diagnosis and resulting surgeries, I’ve worked to provide support and counseling to those who have gone through genetic testing to understand their own health, and are deciding whether or not to have preventative surgeries. Knowing my risks meant that I was able to make an informed and empowered decision during what was otherwise a confusing and emotional time for me and my family. Taking action when I was healthy meant I was able to make this choice gave me a sense of strength, reliance, and an energy for life in a whole new way."
"Knowing my genetic status was overwhelming. I wished I could just check out for several weeks while processing all this information and hook myself up to a Prozac drip. But I am a mom, and there was the matter of taking care of my kids, so checking out was not an option.
"I am still coping emotionally. The coping doesn't end. The actual diagnosis of a BRCA gene mutation is just the beginning. Even though I had prophylactic surgeries (bilateral mastectomy with breast reconstruction, oophorectomy, hysterectomy), I still need regular health screenings.
"For me, diving into my advocacy work and helping others definitely helps me cope. However, I am human, and I have hard days. My family, best friends, and unconditional love and cuddles from my dog help."
"Emotionally, I was a wreck after testing positive for the BRCA mutation. I had lost my 47-year-old sister a year earlier to triple negative breast cancer, and she was also BRCA2 positive. I didn’t know what this mutation meant for me and there was not a lot of information out there for men with mutations. Being a male mutation carrier was quite depressing and it came with a lot of social stigmas.
"Having to get mammograms was one of my biggest emotional hurdles. The system is not set up for men. After a few appointments I realized it was just my ego that was out of whack. I turned the depression into gratefulness.
"Realizing that I could take preventative actions by meeting with specialists really changed my overall perspective about the BRCA mutation. I was grateful to have the information about the mutation. Many people don’t get that opportunity. My sister and aunt never did."
"When my oncologist called me and told me yes, I was a BRCA1 carrier, it made sense of my overly aggressive, triple negative recurrent breast cancer. I survived this for my children and my family. Five recurrences in five years, ports, radiation and five terrible years of chemotherapy was hard but there was no way I was going to leave an infant daughter and very young son alone without a mother. My whole family and my children’s little smiles is what got me through.
"I work at Cancer Treatment Centers of America, and had an opportunity to hear our plastic surgeon talk about some of the aspects of plastic surgery breast reconstruction. I was not an easy patient to operate on with any degree of success.
"Cancer is a terrible diagnosis. It teaches us what’s important in life and to love each other more. Be more tolerant and try to be friendly to the people you meet. You never know what they are going through."
"When I first learned that I was a carrier for the BRCA gene, I felt a wave of anxiety crash over me about how it would impact my future. I was a sophomore in college and trying to decide what kind of life I wanted to create for myself. I worried that carrying the gene would mean that at some unknown point in my future, cancer would bring everything to a grinding halt, and add stress to my loved ones' lives. However, strangely enough, I soon felt an overwhelming sense of relief. By knowing early on that I was a carrier, I felt a sense of control over my body and my future. The information felt empowering because I could take action when I felt the time was right.
"Throughout my time college my mom [Debbie, quoted above] and I continued to have conversations about the appropriate next steps. There never would be a 'perfect time' to take a preventative measure, but I knew without a doubt that it was something I wanted and needed to do. Though at first I was fearful of undergoing something so big, I was not going to treat the gene as a ticking time bomb. I had the knowledge and support to ultimately decide for a preventative double mastectomy.
"It goes without saying that I could not have done this alone. My mom is my hero — she has been for as long as I've known what heroes are. Knowing what my mom endured to be in my and my brother's lives, I am so proud to be her daughter."
The mental health impact of testing positive for BRCA genetic mutations can be significant. However, people who've gone through it testify that you can get through the experience. "Talking to a licensed counselor can be very helpful for added support, as well as for a safe place to process," McBain tells Bustle. If you've recently been diagnosed or are planning to take the test, the right support networks, including professional help, can make a big difference.
If you or someone you know is seeking help for mental health concerns, visit the National Alliance on Mental Health (NAMI) website, or call 1-800-950-NAMI(6264). For confidential treatment referrals, visit the Substance Abuse and Mental Health Services Administration (SAMHSA) website, or call the National Helpline at 1-800-662-HELP(4357). In an emergency, contact the National Suicide Prevention Lifeline at 1-800-273-TALK(8255) or call 911.
Heidi McBain, LMFT, LPC, PMH-C