Talking to My Son About Hereditary Cancer

January 22, 2019 by Marisol Rosas
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Marisol Rosas

I first found out I had a genetic mutation a few months after my second son was born and my older son was barely 3 years old. Having lost my mother to ovarian cancer when I was 8, I was in a hurry to get my prophylactic surgeries done, to weather the storm and to go on with my life. The process of making decisions about surgery, planning for downtime, and recovering physically and mentally proved to be more challenging than I thought. Fortunately, I found Facing Our Risk of Cancer Empowered (FORCE), a wonderfully supportive community devoted to improving the lives of people with genetic mutations associated with cancer. I was amazed and grateful for what they do. So much so, that after my recovery I volunteered with them; I am very active as an advocate, making sure that no one goes through this high-risk journey alone.

While my boys were little, I didn’t give too much thought about how to share my experience and its hereditary high-risk implications with them. Recently though, when my older son turned 13, I knew it was time for that conversation. Returning from a conference, I was proudly sharing my recent adventures in hereditary cancer advocacy with my sisters. I was showing them printed profiles of the conference participants, including mine, when I realized that my son was reading my profile with a puzzled look on his face.

A couple of days later, when I had dropped off my younger son and had my new teen alone with me in the car, I asked him, “What did you think about my profile?”

His answer was classic teenager: “It was fine.”

He knew I volunteered, but he wasn’t sure why, so I said, “The reason I volunteer is not only because my mom died of this…”

He looked at me with watery eyes and asked, “Mom, are you trying to tell me that you have cancer?”

I sighed with relief, knowing that I was able to honestly answer “no” to his question. I explained what a mutation is. I told him that I considered myself to be lucky to find out about my high-risk mutation before getting sick, and that even though it was a hard decision, having surgery to remove certain parts of my body was the right decision for me to decrease my risk.

“What parts?” he asked.

“My breasts and ovaries,” I answered.

“But, um, you have breasts,” he answered, turning a bit red.

After answering my son’s questions about health, inherited risk and my breast reconstruction with silicone implants, his next question was, “So, if I inherit this, does it mean I could lose my penis or testicles?” I chuckled for a second thinking that would be a scary idea for any male. Then, I looked at my son, who seemed as though he might pass out from hyperventilating. I explained that having this mutation meant different risks for men and women, and if he someday learned he had inherited my mutation, how would not lose any body parts. His demeanor returned to normal.

He didn’t ask and I didn’t burden him more about the future or getting tested or what it might mean if/when he wants to start a family. I am grateful to have had this initial conversation with him and have faith that by the time he may have to face this issue, we will have better options. In the meantime, we have each other – and a whole community to talk to and rely on.

 

Marisol is in charge of the Helpline at FORCE. She is also involved in her Hispanic community and has participated in several conferences, both at home and beyond our borders. She resides in San Diego, California, with her husband, Luis, and her two sons, Santiago and Nicolas.