When he was 5, my son went through a phase where he would climb up onto the couch where I was sitting, plop himself on my lap and punch my breasts, squish them in his hands, then try to pinch my nipples. I’d push his arms down and pull away, saying, “Ouch! That hurts, buddy. Please, don’t poke me there.”
My daughter, then an inquisitive 6-year-old, was more likely to ask pointed questions. A conversation might start like this: “Mom, why do women have breasts but not men?”
We talked about how men do have breast tissue and nipples but that women’s breasts look different – bigger, bouncier – because they serve a different function.
And then, “Did you breastfeed us, Mom?”
She knew the answer, but she asked anyway.
“No, I didn’t breastfeed you, sweetie,” I replied. “ I fed you formula from a bottle,” I reminded her, adding, “and because of that, Daddy got to help feed you, too!”
Curiously, the question she hadn’t asked, until recently, was why.
Thirteen years ago, when I was 30 years old, I underwent a prophylactic bilateral mastectomy with reconstruction – that is, I opted to have my healthy breast tissue scraped clean from my skin, removed and replaced with silicone substitutes.
In my family, breast cancer is like puberty; if you are a woman, you wait for it, prepare for it, wondering when – not if – breast cancer will strike. My mom’s grandmother died of breast cancer when she was in her early 50s; my mom’s aunt died of breast cancer at age 35; my mom’s mother was diagnosed with breast cancer the year I was born, but had a mastectomy, and is still alive today at 96 years old.
Of my mom’s four sisters, three – plus my mom – developed breast cancer, two in their 30s and two right around age 50. The two who developed cancer earlier in life have since died, as has one of the other two, despite undergoing a bilateral mastectomy. The one sister who hasn’t developed breast cancer is also the only sister who tested negative for a deleterious BRCA2 mutation.
Like my mother and three of her four sisters, I carry a potent BRCA2 genetic mutation that, before surgery, put my lifetime risk of developing breast cancer pre-surgery at 55-69%. A prophylactic bilateral mastectomy has reduced that risk by 90%. (Risk cannot be completely eliminated because even the most experienced surgeon cannot remove all breast tissue.)
I continue to undergo annual screenings: manual exams by my gynaecologist, primary care physician and breast surgeon. As the risk of my implants rupturing rises the longer they are in place, last year I had a breast ultrasound followed by an MRI with contrast to survey the integrity of my implants as well as to screen for cancer.
With such vigilance, I am confident that, should a malignancy arise, the tumour would be caught early and my prognosis would be better than it was for previous generations of women in my family.
That said, when I decided to remove my breasts, I did not intend to have children. Now, I have children, and those children are no longer infants. They are not toddlers. They are school-aged: curious and observant. They have questions. How do I answer?
According to Talking About BRCA in Your Family Tree, a comprehensive online resource published by the National Society of Genetic Counselors, the question of when and how to discuss hereditary cancer with children is dependent on a constellation of factors that each family must consider when weighing the decision.
For example, a caregiver’s understanding of the facts about BRCA mutations as well as his or her comfort level in discussing the topic will in part dictate the timing of the conversation. Likewise, a child’s readiness to receive and comprehend the information determined by their age and emotional and developmental maturity will play a role in when and what details to share.
In my case, the topic of cancer arose organically when my children were very young. Conversations about Grandma Joan began early because of her absence. They know she died of ovarian cancer when I was 23 years old – all grown up, in their minds – and they know she would have loved them immensely, and that her love for them lives on through me.
They also know that Grandma Joan’s sister, Aunt Carol, died of cancer because they were alive when it happened. They met Aunt Carol, spent the night at her farmhouse once when my son was an infant and my daughter was a toddler. My daughter still carries the plush purple blanket Aunt Carol gifted her on that visit, a reminder, again, of a lineage of women who have loved her.
Cancer is not a foreign word in our home, but it is also not omnipresent. I myself am not sick. The concept for them is still relatively abstract, which is why our conversations, when the topic of cancer comes up, are brief. They focus less on specifics and more on preserving the memory of our loved ones.
The burden of hereditary cancer, especially with a family history like ours, is heavy, and I don’t want to instill fear – fear for their own lives or fear of losing me.
However, I do want to acknowledge the women who shaped me, and I want to engage my children’s curiosity with tenderness and honesty. I want them to feel that their questions are valid and that they can come to me when they want answers, even if I am not always sure of what answer to give.
As a hereditary cancer previvor, I have attended conferences, participated in research and volunteered with Facing Our Risk of Cancer Empowered (FORCE), a national nonprofit dedicated to improving the lives of people affected by hereditary cancer.
As a parent, I feel prepared to talk about hereditary cancer with my kids – as they are ready. For now, that will likely take the form of short, general conversations, answering their questions as they arise.
Photo Courtesy Of Cole Rose Land
In time, there will be circumstances that demand more detail – for example, when I have surgery to replace my implants. Even then, however, I intend to keep the topic light, to eschew complicated facts about genetics and focus instead on the proactive choices I make for my health.
This, too, was my mother’s way. She shared our family history with me as the events in our lives called for it, beginning with her sister Nancy’s breast cancer diagnosis when I was 5 or 6 years old.
As a result, the dawning of my own awareness of hereditary cancer happened over time, as I asked questions and my mom answered honestly, to the best of her knowledge. I suspect it will be the same with my own children.
More recently, my daughter sat on the toilet one evening while I brushed her teeth before bed. She asked, “Have you ever had surgery before?”
“Yes, silly! When I had you and your brother!” I responded playfully, referring to the back-to-back caesarean sections that brought them into this world.
“So that’s two times,” she counted.
“Two times, but I also had my ovaries and uterus removed when you and your brother were babies,” I corrected her.
“Three times then,” she said.
“Well, I had one other surgery, too.” I paused as I considered sharing a part of my story that I had not previously disclosed to my girl. At 7 years old, she was inquisitive and adept at observing details that others, including me, often missed.
“Years before you were born, I had my breasts removed to reduce my chances of getting breast cancer.”
She just kept counting. “Four times.”
The electronic toothbrush hummed a tune denoting the final thirty seconds of brushing. “So your breasts don’t make milk anymore,” she continued. “That’s why you couldn’t breastfeed us.”
“You’re right, sweetie. That’s why.”
“Do some women breastfeed their babies?” she asked.
I removed the toothbrush from her mouth and motioned her to the sink to rinse. She grabbed the blue plastic cup on the glass shelf above the sink and filled it with water.
“Of course!” I reply. “Your aunt breastfed your two older cousins, but then she had her breasts removed, too, so when her son was born she fed him with a bottle, just like I did you and your brother.”
She swished and spat, white foam oozing down the side of the white porcelain basin. We retreated to her bedroom to read a story before bedtime, and the conversation ended as our attention transitioned to the routine dimming of lights, the switching on of the white noise machine and the settling down side by side to snuggle and read until we fell asleep.
Photo Courtesy Of Cole Rose Land
I get up from writing and stand in front of the bathroom mirror to observe my scars. The truth is, I haven’t looked at them closely in years. Where I remember seeing swollen, red skin, I see white – pale baby-white, whiter than the skin surrounding the lumpy line of tissue that, after 13 years, is almost easier to palpate than to see.
I do not have to have all the answers now. I can be open and I can be honest with my children’s questions as they arise. And when the time comes to go deeper, I have the resources to guide me through those conversations, too.
In the end, it is my hope that the story I pass on to them about their risk of hereditary cancer is one that posits them in a line of family-devoted, loving, courageous women who did what they could to live. I hope it is a story that empowers them with the knowledge that even if they someday test positive for a BRCA mutation, like me, they will have risk-management options that those women didn’t. And that I used the options available to me to do my best to survive.
Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch at pitch@huffpost.com.