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Why I Chose to Get a Preventive Mastectomy

When genetic testing revealed I was at risk for breast cancer, I took charge of my future.

Joanne Dano took preventive measures to ensure she wouldn't fall victim to the same disease that claimed her mother's and grandmother's lives. | Photo credit: Lee Weissman/The Well

“If I ever have breast cancer, you’re never going to know.”

Those were my mother’s exact words after my grandmother died from the disease.

I was only 8 years old when I learned about breast cancer. My grandmother was 52 when she was first diagnosed, and I have early memories of her being very sick from intense chemotherapy and radiation. My mother cared for her—first through the cancer that grew in her left breast, then through the disease’s return in her right breast two years later.

Though she refused to do chemo the second time around, my grandmother had both breasts removed and lived 22 strong years before succumbing to the disease. Twelve years ago, my aunt on my mother’s side was diagnosed as well, and is now in remission after a lumpectomy and chemo.

Unfortunately, my mother wasn’t as proactive as my aunt and grandmother. She was fearful and simply didn’t want to know if the disease was coming for her. Once, when I tried to take her to the doctor for a mammogram without telling her, she caught on and literally attempted to jump out of the car.

Three and a half years ago, she became ill.

We didn’t know what was wrong. She was losing weight. She fractured her shoulder from lifting a baby. She found lumps that she hid from us. And eventually, on the Thanksgiving weekend before her death, I put my foot down and brought her to the doctor, where we were told she had aggressive breast cancer and had only a few days left to live. That appointment was on a Monday; my mother was gone by Thursday.

I was furious. My mother and I were close, and it took me a long time to come to grips with her decision to not do everything she could to avoid the disease. She witnessed my grandmother suffer through chemo—which was at a time when there weren’t anti-nausea medications or other ways of making chemo a bit easier—and she decided she wanted no part of it. But if she had been proactive, her story would likely have had a happier ending.

Joanne shows off the tattoo she got in memory of her mother, who died of breast cancer. | Photo credit: Lee Weissman/The Well

As a 46-year-old single mother of two boys—now 16 and 21—I knew I had to take charge of my own health. I couldn’t sit idly by and let the disease that took my mother and my grandmother take me, too. "Not me,” I said. “You're not going to get me. You've gotten three women in my family, and it stops with me."

So I decided to take some serious steps. I was already getting mammograms in my 30s because of my family history, but I started getting screened every three to four months and even considered getting a preventive mastectomy. Some people thought I was crazy. But my doctor called me a “ticking time bomb” because of my family history, so I knew cancer would come for me if I didn’t beat it first. I would say, "It's my life, my decision," and push forward.

After my aunt was diagnosed, my doctor and I did extensive genetic testing, including the test for BRCA genes 1 and 2 mutations. Knowing that a positive result for those mutations would put me at an increased risk, I spent six weeks worrying about the results. It was intense, but I learned a lot about my family and myself.

And what a relief: I found out I was negative for the BRCA mutations. But I couldn’t get complacent. I still suspected there might be a genetic cause of my family’s breast cancer, so we kept testing. And eventually I learned that I have the gene for Lynch syndrome, which makes you more prone to colon, breast, brain and lung cancer. I cried when I found out.

The diagnosis made sense—my grandmother had breast cancer, and three of her sisters had brain, lung and colon cancers. I decided the next step was to schedule a mastectomy, but my insurance wouldn’t cover it. Even with the positive genetic results, I wasn’t a high-enough risk. “You’re absolutely crazy,” my doctor told the insurance company. “It’s only a matter of time before we find this.”

He tried to fight for me, but it wasn’t until two and a half years later that it became clear I was high risk: Lying in bed, I scratched an itch under my arm and felt my lymph node pop out. After an MRI and more conversations with the insurance company, my doctor called me—the day before Thanksgiving, the same time of year my mother passed—to let me know that the surgery would finally be covered. According to the MRI, I had pre-invasive cancer cells that earlier screenings couldn’t find.

As relieved as I was, I can’t say I wasn’t nervous. I was scared. I cried. But I have two beautiful boys and I never wanted my sons to see me break. If I couldn’t be a pillar of strength for them, who could?

On the morning of my surgery, I hugged my youngest son, Christian. “This is it,” I said as I comforted him, “this is where the worrying stops.”

“'Not me,' I said. 'You're not going to get me. You've gotten three women in my family, and it stops with me.'”
Joanne Dano

After the mastectomy and a minor setback with a hemorrhage, I was home. But the recovery process was lonely and difficult. Taking care of myself was a struggle—I couldn’t possibly ask my sons to help me in the shower, so I had to do it myself, which was hard after such an invasive surgery.

Financially, as a single mother on medical leave, I knew I would be crushed. I prepared myself as much as I could and tried to work a lot before the surgery, but it was still a struggle. It was hard emotionally, too. When I felt my weakest, I wished I could call my mom, but I drew strength from my friends, God and the women around me who have been through 10 times the battle I have. I returned to work two and a half weeks after my surgery.

The hardest part was looking at myself in the mirror. I would open my bra and think, “Oh God, what did I do?” But my doctors assured me I would eventually look like my old self again, so I put my faith in them. There were days I wouldn’t look down at myself in the shower. Days I avoided mirrors altogether. But I’m a spiritual person, and I believed that if I put God first, the rest would follow.

Eventually I healed and moved on to reconstructive surgery with Dr. Tanna at Northwell Health’s Department of Plastic and Reconstructive Surgery, which was always my plan. I think the women who choose to stay flat are as beautiful and inspiring as any. But for me, I knew reconstructive surgery would make me feel whole again. I wanted to look as much like my old self as possible.

It’s now been a year, and I’m healthy and happy. I’m thrilled to say I beat cancer before it got me.

Next Steps and Useful Resources

Published May 8th, 2018