Choosing Surgery After BRCA Gene Test Results

Kimberly always knew she had an above-average risk for breast cancer. Her grandmother died of the disease, and four of her aunts have had it. But after some unexpected nipple discharge, she decided it was time to speak with an oncologist.

Kimberly wound up choosing to get tested for BRCA1 and BRCA2 mutations. Everyone has BRCA genes, which help prevent cancer by keeping cells from growing too rapidly. But women with a BRCA mutation have a higher risk for developing breast cancer and ovarian cancer.

When the test came back positive, Kimberly, who is now 45 and lives in Tennessee, decided to have surgery to remove both breasts and ovaries. In this edited interview, she discusses how she made that choice and how it went.

ACOG: First, tell us about your decision to have genetic testing.

Kimberly: In 2017, I started having nipple discharge that reminded me of breast milk. I went through a series of antibiotics, thinking it was an infection. Then in January 2018, I saw a surgical oncologist and explained what was going on and my family history. My grandma died of breast cancer at 47. I have seven aunts, four of whom had breast cancer. I have two male cousins with breast cancer. The doctor asked if I wanted genetic testing, and I knew I did. I was tested soon afterward.

ACOG: What did you do when you received the test results?

Kimberly: I received the results over the phone, via voice mail: “You’re BRCA2 positive.” When I listened to the voice message, I wrote down BRCA, and then did some research. I learned my risk of getting breast cancer by age 70 was as high as 85 percent, compared with about 12 percent for people without a BRCA mutation.

Then I called a friend who’s an ob-gyn. She said she would clear her schedule and come with me to see the oncologist, to learn more about my risk for cancer and talk about my options.

ACOG: Why did you end up deciding to have the surgeries?

Kimberly: The concern wasn’t so much breast cancer as it was ovarian cancer. By the time doctors find ovarian cancer, it’s typically late stage. I was not willing to take that risk for my husband and my sons.

So the doctor recommended preventive surgery. I said to him, “You are telling me to remove everything that helps me identify as a woman.” He said, “Yes.” That took some time to process.

ACOG: How did you make it through the decision process?

Kimberly: I have a great support system – my husband, my mom, my friends who are doctors. They helped me talk, and they let me cry. It took me 3 months to make the decision. I knew in January that I was going to do the surgery. Then I didn’t do it until May. It took that long to get enough guts, and I wanted to make sure my sons were out of school for the summer. They were 21 and 14 at the time.

ACOG: What kind of care did you get before the surgery?

Kimberly: I had a consult with the plastic surgeon, who would reconstruct my breasts after the mastectomy [breast removal]. He said, “I’m going to be with you from beginning to end.” My team was the best. I had a health coach, I had my plastic surgeon, my psychotherapist, and I had my friend who is an ob-gyn.

ACOG: How did you cope with the idea of losing your breasts?

Kimberly: I thanked my breasts – they fed my babies. If you asked for an asset that I was proud of, it was my breasts. And I had to get my nipples removed too, because my insurance wouldn’t pay otherwise. I felt like I just benched my key player in my sexual intimacy.

ACOG: What were the surgeries like?

Kimberly: The first two surgeries were in May 2018, on the same day. The first surgeon removed my breasts, and the second inserted spacers for the reconstructive surgery. In October 2018, a surgeon put in the breast implants, and another removed my ovaries. When my ovaries were removed, I went into menopause overnight. My hormones were going crazy. Black cohosh was the only thing that helped me with the symptoms.

[Plants and herbs like black cohosh are sometimes used for relief of menopause symptoms, though few have been studied for safety and effectiveness. If you take black cohosh, be sure to let your ob-gyn know.]

In January 2019, I had 4D nipple reconstruction – my plastic surgeon reconstructed my nipples with tissue from my belly button. And that fall, I went to a tattoo artist to get shading around my nipples.

ACOG: How did the decision and surgery affect you physically and emotionally?

Kimberly: It’s been an emotional rollercoaster. I took video and pictures along the entire journey and I still can’t look at the pictures without crying. I documented my journey of healing so I could help other women along the way. The first stage is dealing with the past. Then you deal with the present, and then the future. It was life-altering and life-changing. I felt like my body, this body that was supposed to take me through life, betrayed me.

ACOG: Have you had any follow-up care?

Kimberly: The plastic surgeon wanted to see me in January 2020 to see the final results, but that was it. I also had chosen a psychotherapist in 2018, after I made the decision but before the procedure. He has been a major player who has helped every step of the way.

ACOG: What surprised you about the experience?

Kimberly: The doctor said the worst part would be “the damned drains,” which help fluid from surgical sites exit the body. Most women have drains on the side of their breasts. I was having reconstructive surgery, so he stitched them into my armpits. I felt like someone was sending razor blades into my skin. But there was minimal scarring. I can have a bikini on and you wouldn’t know I had surgery.

ACOG: What do you know today that you wish you had known then?

Kimberly: Home health care! I wish I had researched and found professional home health care to help me recover. And I wish I had known it would be a rollercoaster. You heal from one surgery and you’re ready for the next set.

You also take for granted physical touch – even hugging was too painful after surgery. My husband and I truly learned about nonsexual physical touch and intimacy. That was a blessing for our marriage.

ACOG: What would you tell other women who are facing the same decision?

Kimberly: If you choose the elective surgeries, you get to control how this goes. You get to write this book. You get to write the chapters. Never once in this journey forget that. Have a team. Pick all the players and utilize your team.

And remember, this is a journey for you. Be nice to yourself. Let your body heal.

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This information is designed as an educational aid for the public. It offers current information and opinions related to women's health. It is not intended as a statement of the standard of care. It does not explain all of the proper treatments or methods of care. It is not a substitute for the advice of a physician. Read ACOG’s complete disclaimer.