Talking About Family Cancer Risk

April 2, 2019 by Ashley Dedmon
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Ashley Dedmon

Proactive Genes: Can you describe your family’s experience with breast cancer?

Ashley Dedmon:Breast cancer impacted three generations of women in my family. In 2003, when I was 18 years old, my mother was diagnosed with stage 4 metastatic breast cancer and, unfortunately, lost her four-year battle at the young age of 52.

Shortly after my mother’s battle, my father was diagnosed with prostate cancer, and is now a cancer survivor. With a family history that includes three generations of women affected by breast cancer, I decided to undergo genetic testing and discovered I was BRCA2 positive, a leading marker for the disease.

A cancer diagnosis can come with a lot of emotions, before having these discussions, how can parents first prepare themselves for these conversations?

A cancer diagnosis is not the patient’s fault, nor are they or should they feel they will be a burden on their family and friends.

It is important that the patient talk with their spouse, significant other, their doctor, a family member or friend before speaking with their children. Create a game plan for the discussion. Practice the conversation and even try to anticipate their responses or questions. You know your children best!

Have the conversation when your feelings and emotions are not at their highest. Our children can pick up on our feelings and emotions. If we are panicked and frantic, they will pick up on that. I’m not suggesting you hide your feelings and emotions of concern or sadness. Our children need to know that this is a serious and important conversation.

Have in mind or written down how much information you will share with them in the first conversation. This is not a one-time discussion; a cancer diagnosis is a journey and a process.

I feel it is important to use the words “I am sick.” Our children understand what it means to be sick and usually will show concern and comfort.

Be patient with yourself and your children. There will be many feelings and emotions displayed during the conversation, but the good thing is you get to set the tone. It is important that your children hear the news from you, before they overhear it, hear it from someone else, or hear a friend’s personal experience with a cancer diagnosis. Hearing it from you is powerful! It opens the door for communication, transparency, and reassurance.

Know that this journey is a process, and this disease can have an impact on the patient and their entire family. Have no expectations and know that everyone handles and processes information differently.

If  asked, I believe it is important that you reassure to your children that the diagnosis is not their fault. There is nothing they did wrong to cause you to get sick, and there is nothing they can do right to make you well. Have ongoing check-ins with them, and if individual or family counseling is needed, explore that option.

From your own experience with talking with your daughter about your family’s health history, what kind of language do you recommend using when having these discussions?

Many of our conversations about our family health history come when we discuss why we do not eat certain foods. We share with our daughter that we want to try to make healthy decisions to reduce our risk of cancer, diabetes and heart disease (our family health history). We share with her that making healthy decisions keeps us healthy, reduces our risk of getting sick, and improves our quality of life.

We were very open and honest with our daughter. It is important for my husband and I to use proper and child-centric terminology (for example, cancerous vs. malignant) when having our conversations. We have our conversations in a very non-structured and educational way. We let the questions evolve organically, and we are always available for her questions.

Finally, In my 10 years as a health teacher and curriculum writer, I discovered our children are very smart, they are resilient and they can handle heavy information. As adults, we think they cannot handle important information, but they can. We have to give them the opportunity to do so.

What is your biggest piece of advice for parents who have to have discussions about a cancer diagnosis with children?

Simply put, tell them in your own way. Every child is unique, and the discussion should be done at their pace and comfort level. You know your children best, and it is up to you to decide when and how much information to share.

Our children come on the journey with us, so it’s essential to also focus on their emotional, mental, social and physical health.

Stay strong, keep the faith and finish your race!

 

Ashley Dedmon is the founder and CEO of Pink Legacy 50/50, a platform that educates, equips and empowers individuals who are impacted by or at high-risk for breast or ovarian cancer. She is the author of “The Big Discovery” – a children’s book inspired by her time as a young caregiver, a school teacher and her BRCA journey as a mother. Her book is an education tool that facilitates and guides families through a difficult and sensitive conversation. For more information, visit pinklegacy.com.