Talking To My 9-Year-Old Before My Risk-Reducing Double Mastectomy

August 6, 2019 by Kim Horner
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Kim Horner

My son, Leo, was in diapers when I tested positive for a BRCA2 mutation.

My grandmother and great-grandmother died of breast cancer in their 40’s. I was 41 and wanted to do whatever I needed to do to be around for my son as long as possible. BRCA2 mutations raise the risk for ovarian and pancreatic cancer, too, which also runs in my family.

In 2009, the year I found out about my BRCA2 mutation, I had a bilateral salpingo-oophorectomy and hysterectomy to reduce my ovarian cancer risk. Leo was 2. All he really needed to know at that age was that mommy was in the hospital and, afterward, had an “owie” on her tummy and needed to rest.

It took me several years to decide and then work up the courage to have a double mastectomy to reduce my breast cancer risk in 2016. Leo was 9. I had never talked to him about my BRCA2 mutation before. As my surgery date came closer, it was time. I wanted to tell him I was having surgery and why, but I didn’t want to scare him.

What exactly do you tell a 9-year-old? I had no idea. I found a few websites with information about talking to kids about cancer, but not much (at the time) about having conversations about genetic mutations and risk-reducing surgery existed.

Experts often say to give kids the basics about a difficult topic and let them ask questions if they want to know more. Leo likes science and even went through a period of being obsessed with learning about the human body. I was prepared for a lot of questions.

I also figured howI told him was just as important as whatI told him. The last thing I wanted was to cry or sound scared. I didn’t want to tell him too far in advance and give him too much time to worry. So, one evening, a couple of weeks before the surgery, I told him that I have a genetic mutation and that I was going to the hospital to have surgery to remove tissue from my breasts to reduce my risk of cancer to keep me healthy. I said I would stay home from work to recover and that I would need help lifting things and taking out the trash.

Leo listened calmly. I asked if he had any questions. At first, he said no. Then, a few seconds later, he asked: “You’re not going to die, right?”

“No, sweetie,” I said. “I’ve got the best doctors and they’re going to take good care of me.”

I hugged him, gave him a kiss and held him as long as I could before he squirmed away so he could go back to playing Minecraft.

Recently, I found some great advice on talking to kids about hereditary cancer risk from Facing Our Risk of Cancer Empowered(FORCE):

  • Use simple, age-appropriate terms.
  • Avoid premature reassurances and validate your child’s concerns. Pushing a child’s fears aside makes the situation appear too big and scary to talk about.
  • Avoid unrealistic promises. Broken promises can diminish trust.
  • Allow your child to tell you how little or how much she wants to know. Some children are more curious, others are more private.
  • Allow your child age-appropriate participation in your process. Give him jobs to help him feel he is contributing.

There’s no perfect way to talk to children about serious health issues, especially when you are scared and emotional about the topic. I worried about whether I gave Leo too much assurance that I would be fine. What if I wasn’t? Would the fact that I said I would be OK make things worse? I was fortunate that my surgery went well without complications. My surgeon said my timing was excellent: The pathology found I had very early stage breast cancer, DCIS. The cancer was removed during the surgery and I would not need any more treatment.

Soon, it will be time to discuss my BRCA2 mutation in more detail with Leo, who is now 12. Over time, I want him to have all the information he needs so that when the time comes, he will be equipped to make decisions about genetic testing, facing his own risk and protecting his, and possibly, his own children’s health.

 

Kim Horner is author of Probably Someday Cancer: Genetic Risk and Preventative Mastectomy(University of North Texas Press, 2019)