Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Alisa Cowan
I've made many promises throughout my life. I never gave them much thought until my oldest daughter, Taylor, started asking me to make promises to her. I promised I would make her a sandwich on her favorite potato bread, and that I would play our lullaby on the piano each night before she and her sister fell asleep. These were small promises, but they meant so much to her. She believed you should never make a promise that you can't keep. I had no problem upholding my end until the day she said, "Mommy, promise me you won't die." Wow! What do you say to that?
Knowing how random, how senseless, how quick and unexpected death can be, this promise suddenly meant more. Her weighty request came after her good friend lost her father. Being quite intuitive, Taylor realized what the loss meant for her friend. She told me how sad she was, because her friend's father would never be able to read a bedtime story to his daughter again. From then on, death was on Taylor's mind a lot. So when she asked me to promise that I would always be around, I knew the answer mattered. I had to believe the answer I gave her with all my heart.
I came up with a series of carefully-crafted sentences to assure her I had no intention of going anywhere and I try to eat right, exercise, and do all the right things to stay as healthy as possible. I believed it and she accepted it. Then came news that gave my daughter's question even wore weight.
My mother was diagnosed with breast cancer.
Like my grandmother and great aunt, my mother now faced the disease. My family fit the profile for a genetic mutation; my mother decided to have genetic testing. When she tested positive for a BRCA2 mutation, I knew I had to get tested myself. My test was positive too.
Even though I always assumed breast cancer was in my future, finding out that it was in my genes, in every cell in my body, was like a kick to my stomach.
"Mommy, promise me you won't die."
Now those words refused to leave my head. They were made even more painful mixed with the guilt I felt knowing my children have a 50% chance of having this horrid mutation as well.
I met with oncologists, genetic counselors, and gynecologic oncologists to learn my options. Most importantly, I learned to view my knowledge of my genetic status as power. Knowing I was likely to get cancer eventually, I could make a pre-emptive strike and do something about it now. A few months after getting the news, I scheduled a bilateral oophorectomy. Preparing my daughter for my surgery is exactly what helped me find the answer to her question.
"Mommy, promise me you won't die."
I will never say to her, "I promise honey, I won't die." I couldn't do that, and she wouldn't believe me. I'll tell her that I'm taking care of myself because I want to be around for a long time, and for me, this means having surgeries to remove parts of my body that will probably get sick. But I will never make a promise to her that I cannot guarantee I will keep. Maybe she'll grow up stronger because of it. Maybe not. But I know, in case of the unexpected, she will never have the added heartbreak of a broken promise.
Alisa Cowan lives in Maine with her husband, their two children and their horse.
by Karen Hurley, PhD
Alisa’s poignant essay illustrates how parents can be sensitive to a child’s perspective and still convey information about cancer risk in a clear, simple, and realistic manner. Although some parents may find it less distressing in the short run simply to shield children from threatening information, she rightly points out that this can undermine trust in the long run. Even adults do not react well when they receive premature reassurance from a healthcare provider (“Oh, it’s probably nothing”), only to have this expectation violated when “nothing” turns out to be “something” after all.
It’s common for parents to express guilt for “passing on the gene,” even if they know that inheritance is completely random. Some parents may find it easier to blame themselves than to accept the more disturbing possibility that they cannot completely protect their children from all harm.
Having young children, and wanting to do everything possible to be around for them, is often a powerful motivation for undergoing risk-reducing surgery for breast and/or ovarian cancer. Other considerations, such as impact of surgery on body image, sexuality, and so forth, may fade into the background. However, it is important for a parent who is contemplating surgery to take care of herself psychologically with good presurgical counseling so that she is prepared for how the surgery may affect her.
Alisa and her family are facing things that we all find scary—uncertainty, mortality, the risk of suffering, and the potential loss of loved ones. She is using this opportunity to teach her daughter how to deal with these unavoidable facts of life, and to provide her with a role model of how to face such challenges empowered, and with love.
Dr. Karen Hurley is a licensed clinical psychologist and researcher at Memorial Sloan-Kettering Cancer Center. She provides consultation and psychotherapy to individuals, couples and families on psychosocial concerns related to inherited risk of cancer. She also holds several grants from the National Cancer Institute, Department of Defense, and other agencies, to study issues relevant to hereditary cancer risk, particularly decision-making about prophylactic surgery.
A Tiny Boat at Sea by Izetta Smith (booklet available at www. compassionbooks.com)
In Mommy’s Garden by Neyal Ammary (booklet available at no charge at www. cancercare.org)
Helping Your Children Cope with Your Cancer by Peter Van Dernoot
How to Help Children Through a Parent’s Serious Illness by Kathleen McCue
Do you have something to say that may inform our readers or ease their experience? We invite you to share your reflections or personal story about dealing with the issues of hereditary breast or ovarian cancer. Tell us how you feel, how you cope, or what you’ve learned. Email stories of 500-550 words to:
or mail to:
16057 Tampa Palms Blvd.W. #373
Tampa, FL 33647
Please include your name and daytime telephone number so we can contact you if we decide to publish your story in a future issue.