Living With BRCA and Ovarian Cancer: Leanne Citrone's Story

Cancer ran through both sides of Leanne Citrone’s family long before she was diagnosed herself. Her mother had breast cancer at 47 and, years later, died three weeks after a second diagnosis at 63. Her grandmother had breast cancer, an aunt had it four times, an uncle died of brain cancer at 32 and her grandfather developed liver cancer late in life.

So when Citrone, who grew up in England and now lives in Los Angeles, tested positive for a BRCA mutation at 35, she said she “wasn’t surprised to say the least.” Years after an elective double mastectomy, she was diagnosed with stage 2C ovarian cancer. In an interview with CURE®, she discussed living with hereditary cancer risk, how quickly her symptoms appeared, the anxiety that arrived after treatment ended and the advice she now gives other patients.

Choosing an Elective Double Mastectomy at 35

Citrone took the BRCA test after hearing about it and thinking about her family history. At the time, her son was about 5 and her daughter was 2 or 3.

“I just felt like with my family history, it was best for me to have an elective double mastectomy,” she said. She also chose to have her nipples removed after hearing of people who later developed cancer there. “I just was like, let me just take it all and just eliminate the stress and worry.”

She did not have breast cancer. But she said she tried to do everything she could to manage her risk afterward. “I don’t drink or smoke or do drugs or eat fast food, and I live a really healthy life,” she said.

How Her Ovarian Cancer Symptoms Came On Fast

In the years after her mastectomy, Citrone talked with doctors about having a hysterectomy or her fallopian tubes removed, but no one in her family had had ovarian cancer. “I was like, I don’t need to worry about it. I’m fine. It’s not going to happen to me,” she said. She kept up with regular checkups.

Looking back, she said some of her earlier symptoms, including very heavy periods and exhaustion, were chalked up to menopause. Then, within about a month, her abdomen became severely bloated and distended. “I looked like I was about to give birth,” she said. “My stomach, from below my rib cage all the way down, was like rock hard.”

A friend suggested small intestinal bacterial overgrowth (SIBO), and Citrone tried to get in to see a gastroenterologist, but the wait was weeks. Feeling worse by the day, she went to a private urgent care service, where an X-ray showed a blockage. Days later, a CT scan and blood work led to her ovarian cancer diagnosis. She had a 14-centimeter tumor on her left ovary and a 4-centimeter tumor on her right.

“In hindsight, everybody but me knew what was going on,” she said. “The whole thing happened so quickly.”

Looking Back on the Decision to Keep Her Ovaries

Citrone often thinks about a flight she took with her husband years before her diagnosis. He sat next to a doctor who was writing a book about women’s cancers and BRCA. As they got off the plane, the doctor told him to have his wife get a full hysterectomy.

“I was like, ‘Yeah, yeah, I don’t need to. I’m fine. I’m super healthy,’” Citrone recalled. “So I think about that often.”

Still, she said she does not really regret the decision. “I did everything I could before I was diagnosed,” she said. Speaking from her own experience, she said that if she were asked, she would tell someone in her position to have everything removed so they don’t have to worry about it, while acknowledging that “everyone’s situation is different.” Anyone weighing that kind of decision should talk it through with their care team.

Treatment, and the Anxiety That Came After

Citrone said she approached her diagnosis with determination. Most women with ovarian cancer are diagnosed at stage 3 or 4, she noted, and hers was caught at stage 2C. “For me, I was just like, ‘Let’s do this,’” she said. “There was never an ounce of doubt in my mind that I was going to be fine.”

Treatment was still hard. She had surgery with an incision from her belly button down to remove the tumors, was readmitted to the hospital for a week and needed blood transfusions. “The journey of treatment is so hard on the body emotionally and physically and on the family,” she said.

It was after treatment ended that she fell apart. She described daily anxiety that can swing dramatically, especially around scans. She had one the week before the interview and said she was “an absolute wreck about it.”

“I’ll get stuck in my head that it’s going to come back or that I’m going to die,” she said, noting that her mother’s cancer came back and she died quickly. “There’s moments where I’m fine, and there’s moments where I’m a complete wreck about the whole thing. I think really the PTSD of cancer and the shock of what I went through didn’t hit me until after treatment was done.”

Making Peace With Her Body

Citrone said her mastectomy affected her relationship with her body more than her ovarian cancer did. She had always been self-conscious, and for about 10 years after surgery she stopped going to a women-only Korean spa she loved because of how she felt about her body.

Sharing her ovarian cancer experience openly on Substack and Instagram changed that. “Before, I came from a place of, oh, I look so ugly,” she said. “Now I live in a place where I say all the time, I’m just grateful to be alive, to not have cancer and to have hair on my head.”

Her relationship with her physical self is better now, she said. It’s the daily anxiety that remains the hardest part.

Advice for Others With Ovarian Cancer

For someone newly diagnosed, Citrone said there is no wrong emotion, from sadness to fear to anger to frustration. Living with a BRCA mutation, she said, she had always known in the back of her mind that she might get cancer, and treatment taught her to accept help.

“I learned the skills of asking for help when people offered, and taking help and taking support, and that you’re not alone, and that people want to show up for you,” she said.

After treatment, meditation and staying in the present help keep her from spiraling, though she said it is something she battles every day. What has helped most is connecting with people who have been through cancer, or are going through it now. She said some well-meant gifts with cancer slogans were triggering for her, while talking with friends who truly understood was what helped.

“Finding people who have been through or are going through a cancer journey at the same time has been the most helpful for me,” she said, “because it’s just someone that really understands where you’re at and what’s going on.”

This transcript was edited for clarity and conciseness.

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