‘I have the chance to fight back’: Choosing a preventive double mastectomy

How one BRCA1-positive woman decided to have both breasts removed to lower her risk of breast cancer
Justine Avery Sands opted for a preventive double mastectomy to reduce her inherited risk for breast cancer
Two years ago, Justine Avery Sands decided to have her breasts removed in a surgery known as preventive double mastectomy, a choice prompted by her family history of breast cancer.

One of Justine Avery Sands’ first memories was of driving to the hospital with her mother.

“She was a very open woman. She didn’t believe in lying,” said Sands, a 34-year-old Seattle sales executive. So when Sands asked, her mom told the 4-year-old exactly where they were going: to see a doctor about a lump her mother had found in her breast.

“I told her, ‘Maybe it is that Froot Loop I gave you earlier,’” Sands remembered. “She laughed and said, ‘I hope so!’”

That day was the beginning of Sands’ journey with cancer. Five years later, her mother died of breast cancer at the age of 43, when Sands was 9 years old. A few years after that, Sands’ aunt was diagnosed with breast cancer. She went into remission but later died of ovarian cancer. Then a cousin was diagnosed with breast cancer at 34.

Two years ago, Sands decided to have her own breasts removed in a surgery known as prophylactic, or preventive, double mastectomy – a choice prompted by the reasons behind her family’s history of breast cancer. Her cousin’s doctor recommended genetic testing, and many of her other relatives decided to get tested too. It turned out that the family harbors a mutation in the BRCA1 gene that dramatically raises the risk of breast and ovarian cancer. Sands, fresh out of college, delayed her genetic testing for several more years.

‘I didn’t want to live with the shadow’

“I thought I was invincible at 23,” she said. “I didn’t want to live with the shadow, but then I realized I was already living with it.”

After undergoing multiple breast cancer screening appointments every year for half a decade – increased surveillance is often recommended for those at high risk of breast cancer, even young women – Sands decided to get tested at 28. She found that she, too, carried the potentially deadly mutation in her BRCA1 gene. The next four years were an “emotional roller coaster,” she said, as she pondered whether to continue aggressive screening in the hopes of catching tumors early enough to treat or to have both breasts removed to reduce her risk of breast cancer.

Although most women with breast cancer do not have a BRCA1 or BRCA2 mutation, these genetic alterations are responsible for the majority of hereditary breast and ovarian cancers. Everyone carries two copies each of the BRCA1 and BRCA2 genes, and a mutation in either one of those two copies — passed on from either a mother or father — boosts disease risk.

Women with a BRCA1 or BRCA2 mutation have a much higher risk of breast cancer than that of the general population. Because of Sands’ specific mutation and family history, her genetic counselor told her she had an 87 percent chance of developing breast cancer during her lifetime. The average woman’s risk is 12 percent, according to the National Cancer Institute. Such mutations tend to cause breast cancer at a young age, as it had in Sands’ family members. A preventive double mastectomy would take her lifetime risk down to less than 5 percent.

So, two years ago, Sands made the tough choice.

“At first I thought, ‘They’re just boobs; who cares.’ But it’s a big part of becoming a woman and being a woman,” she said.

‘The scariest part was the unknown’

As for the procedure itself, she had no idea what to expect. She joined FORCE, short for Facing Our Risk of Cancer Empowered, a national support group for women at high risk of breast cancer. Sands quickly found support and allies as she prepared for her surgeries. One woman from the group even met her at a coffee shop to show Sands her post-reconstruction breasts (in the bathroom).

“The scariest part was the unknown,” Sands said.

Another friend introduced Sands to Fred Hutchinson Cancer Research Center and the Innovators Network, a group of young professionals who support Hutch research. Sands attended an Innovators Network event, and the evening’s topic happened to be genetic links to breast cancer.

“That really touched me,” she said. Sands joined the network and the Innovators Network council, and she found more support among her colleagues and fellow cancer advocates. 

Sands had two procedures in 2012, a double mastectomy to remove both breasts and, later, surgery to reconstruct her breasts using silicone implants. She told the plastic surgeon who performed her reconstruction that she wanted to go small. The surgeon had five different sizes of implants on hand and tried each out on Sands when she was under anesthesia – she propped Sands up on the table to see how each size looked, and ended up choosing the second largest one.

“When I found out, I went into hysterics,” Sands said. “I had a hard time adjusting to my new body because I didn’t want to be the girl with a breast augmentation.”

Sands’ experience made her realize that when she sees someone who might have undergone plastic surgery, it’s impossible to know the reason. Some of Sands’ friends who were considering getting breast implants wanted to talk to her about it, but Sands’ procedures, not to mention the motivation behind them, were very different from cosmetic surgery.

“It’s just skin-on-implant,” she said, in contrast to women who get cosmetic implants who have some natural breast tissue that pads the implants. Sands has no sensation in her breasts now, which took some getting used to, she said. And if she decides to have children, she won’t be able to breast-feed.

After her surgery Sands questioned whether she’d ever feel normal in her own skin again. But over the past two years, as she’s gotten used to the implants and they have settled into her body, she’s grown more comfortable. Getting back to her favorite activities – running, hiking and waterskiing – helped Sands come to terms with her new body as well.

“When you live with anything long enough, it becomes a part of you,” she said. “In comparison to two years ago, when my implants occupied my thoughts every moment of every day, now most days I don’t even think about them.”

Ultimately, despite the rigors of the procedures, Sands is happy with her choice and thankful for the research that gave her options. That gratitude and the knowledge that ongoing research will lead to better advances for women like her is a big motivator for her continued involvement with Fred Hutch, Sands said.

“I feel super lucky that I was able to really make the decisions that I made and choose to live,” she said. “My mom … was obviously BRCA1-positive but didn’t know it. I have the chance to fight back that she didn’t have.”

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Solid tumors, such as those of the breast, are the focus of Solid Tumor Translational Research, a network comprised of Fred Hutchinson Cancer Research Center, UW Medicine and Seattle Cancer Care Alliance. STTR is bridging laboratory sciences and patient care to provide the most precise treatment options for patients with solid tumor cancers.

Rachel Tompa is a former staff writer at Fred Hutchinson Cancer Center. She has a Ph.D. in molecular biology from the University of California, San Francisco and a certificate in science writing from the University of California, Santa Cruz. Follow her on Twitter @Rachel_Tompa.

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