Why I Wish My Mother Had Told Me About Her Breast Cancer
The daughter of a breast cancer survivor explains why it's important for parents to be honest with their children about their health.
As Breast Cancer Awareness month draws to a close, we've invited a guest writer to share her personal experience as the daughter of a survivor. Lucia Vinuales is a 17-year old senior at the Lycée Francais de New York. She is also the daughter of a breast cancer survivor and the founder of Children's Cancer Corner, a place for kids and teens who have faced or are facing parental or familial cancer.
I remember the moment vividly: I was 12 and my sister was five, and we were sitting on the floor of our pink-painted bedroom. "I have a boo-boo," said our mother, then 39, pointing at her chest. She mentioned a "small extra bone" that needed removing, and said she'd be resting a lot in the coming weeks. I wouldn't understand it until much later, but that was the day she told us she had breast cancer. It was also the last time we'd talk about the "boo-boo" for five years.
I wasn't alone. Hospitals and cancer care organizations offer plenty of programs for couples experiencing a cancer diagnosis - my own parents, for example, actually became closer throughout this ordeal - but because cancer is often associated with older people, there is a lack of resources for younger families as a whole, and people forget that a cancer diagnosis can put a strain on children as well.
About one-third of people with cancer are diagnosed at an age when they may be caring for children, and it has been estimated that around 562,000 children are living with a parent who is in the most intense phase of cancer treatment. The lack of resources for families can result in parents not knowing how to address the subject with their kids. In some cases, they decide it's best not to mention the word "cancer" at all. My mom, for example, opted to hide the details of her diagnosis because she thought we were too young to carry that weight. She was worried about the conversations we'd have at school if we said our mom had cancer. Would our friends' reactions and questions scare us even more? My dad agreed, and explained that they wanted to bring up the subject "very delicately while not telling us much" so we would know "the least amount possible" in an effort to not scare us.
My father was overwhelmed by the news when my mother first told him. He explained to me that his initial reaction was one of pure shock, and emphasized that the word "cancer" immediately inspires fear. He had to find patience while waiting for more test results, and balance his own worries with my mom's while still upholding our family and making sure his children didn't notice something was wrong. In the words of my mom, "He was taking care of everything when I couldn't." The first thing my mother did after getting her diagnosis was call her own mom. Shocked and afraid, she was looking for comfort and support. She felt she was unusually young to be diagnosed with breast cancer and was afraid of what might have happened if she had missed her yearly check-up. Despite her fear, she put on a brave face for her family and wanted to make it "casual, not tragic." She was relieved to find that the cancerous cells had not spread, which meant chemotherapy wasn't necessary, but she would still have to undergo a four-year journey that included a double mastectomy as well as reconstruction.
When my grandmother found out that my parents had hidden my mom's true diagnosis from us, she respected their decision as a couple and didn't tell us anything, either. But despite all this obfuscation, I still realized that something was up. In the months following her diagnosis, I remember being confused by my surroundings. Suddenly our house was filled with bouquets, flower arrangements, and boxes of chocolates, all with letters or a "For Ursula" note attached. I remember photographing each bouquet because I found them pretty, never asking adults what all this meant or why so many people were showing care for our family. My maternal grandparents came to visit from Peru as did family from Spain; they stayed for several weeks.
I have distinct memories of seeing my mom resting in bed for a while, always wrapped up in blankets so that I couldn't see any of the scars or patches she had on her chest. I remember not being able to hug her because she was too fragile to be tightly held, so I would gently place a kiss on her forehead and go on with my preteen life. Seeing her go through physical therapy confused me even more. I wondered why my grandmother would help her slowly lift her arm all the way up, and why that was so hard for her to do in the first place. I vividly remember the pity I would see in people's eyes when they looked at me, my friends' mothers kindly inviting me over in an attempt to distract me.
The effort not to scare me ultimately contributed to the way I decided to deal with my emotions. Because my whole family seemed busy dealing with what looked to me like stress, I decided to keep my thoughts and questions to myself, always. The strangest part of the situation in retrospect was the disjointedness, with outsiders knowing more than the insiders. The adults walking on eggshells around me and looking at me with such care actually created more confusion because it made me think they knew more about my mother than I did.
I spoke to Dr. Adam Brown, clinical assistant professor at NYU Langone's Department of Child and Adolescent Psychiatry, and he confirmed that honesty and directness is preferable in these situations. "It is important to use accurate terms, such as cancer," says Brown. "Provide concrete explanations and use child-friendly language, while avoiding euphemisms like, ‘Mommy has a boo-boo.'" Brown adds that news like this should come from the children's trusted adults because these parents are often the ones who can offer the best support. If parents don't use these direct terms from the start, there's a high chance that children will hear others using direct language and will have more doubts and fears. "Children of all ages are good at reading emotions and tone of voice," says Brown. "It is very likely that children will pick up on the fact that the people around them are worried or upset." Brown also recommends books parents can read with their children like The Year My Mother Was Bald by Ann Speltz and When Someone You Love Has Cancer by Aleric Lewis.
It's also important to recognize the ways age makes a difference in how children understand their parents' cancer. At five, my little sister experienced an increase in separation anxiety, whereas I, a preteen, became more of a closed book with regard to my emotions. Now I also wonder about the long-lasting psychological impact caused by having a parent with cancer. For example, there's a common habit of internalizing feelings or developing a permanent attachment to a parent figure following the event.
In an effort to raise awareness about the importance of this topic, here are some needs that children of different ages may have and suggestions on how to cope with them, shared by Dr. Brown:
- A young child may have questions but is often satisfied with a direct, simple response
- Young children "use play, storytelling, or drawing to express their fears and wishes"
- May need more of an explanation on what's happening with less childlike language
- Could impact their concentration and performance at school
- May affect friendships, either negatively if someone misunderstands or positively if someone shows support
- Adolescents have more questions and need more complex answers
- As near-adults, they're most intuitive and can often tell what's going on even if parents don't tell them
- It's important for children to find activities to soothe themselves as an escape: bonding with a family pet, listening to music, playing a favorite game, going to see friends
- It's important for children to understand what it is they're feeling. For example, by identifying and labeling their feelings or providing validation. "It makes perfect sense that you are feeling afraid or sad, I am here to help you with that."
In November 2014, a few months after the initial boo-boo conversation, I finally realized what my mother was actually going through. My dad was running his first marathon, and my mom and I were standing next to a barrier at East 79th Street and First Avenue in New York City, searching the crowd for him. When I spotted him in the sea of people, I saw he was agitatedly pointing at his shirt. "For Ursula" was handwritten on the chest, with "Lucia" and "Aitana" written on each sleeve. Under my mom's name, the shirt said "Fred's Team," a group running for Memorial Sloan-Kettering Cancer Center, the hospital where my mom was treated. In that quick moment, I connected the dots and realized what my mom had was more than a boo-boo. This key moment was reinforced a few hours later at the finish line, when my parents broke into tears and hugged for five full minutes. It all seemed to fall right into place. Everything that had happened in the months leading up to this now made perfect sense, but we still didn't talk about it.
Now, nearly five years later, I've slowly built up the courage to put my fears aside and open up about my emotions. I've asked my mom more and more questions, and now we're able to have a full conversation about her cancer. I do believe that being left in the dark for a while - although it happened because of good intentions - did contribute to the way I choose to suppress my emotions, though I'm working on that. If I ever notice I'm internalizing feelings, I talk to my supportive family members instead of keeping them inside. If I ever feel afraid about inheriting the cancer gene, I talk to my mom about it openly in order to get the reassurance I need.
Though I'm still healing, I'm advocating for discussion around the topic of parental cancer in order to raise awareness about the ways it affects children. My goal is to prevent kids from going through what I went through, and to help parents fully understand what they can do to help their children through one of the hardest situations they'll ever experience.