At a local event, Shannon Pulaski – author of Mom’s Genes – shared her journey after being diagnosed with the BRCA mutation.
A recent panel at a local NJ university shed light on the BRCA gene and how it affects women’s health to help spread awareness among students and alumni alike.
Shortly after her mother was diagnosed with ovarian cancer due to a BRCA mutation, Shannon Pulaski — author of Mom’s Genes — learned that she inherited the same gene.
At Rider University’s Alumni Weekend, Pulaski shared her journey after being diagnosed with the BRCA mutation during a panel surrounding women’s health.
What is your passion around women’s health?
I’m here because I learned my family history in my 20s, and it was a lot to take in at the time. It might have changed the course of my mother’s treatment if we would have been a little bit more aware of what was going on with our (family health) history before then. I spent a lot of time working with organizations to get awareness out there about women’s health and breast and ovarian cancer risk. It is important to know that even if you do not have a genetic mutation, you are still at risk as a woman of these diseases — whether your risk is high, increased or low – it is important to know that if you don’t necessarily fit in to this high-risk category, that all women of all risk levels need to be aware of their own normal and communicate effectively with their doctors. That average-risk group accounts for about 75 percent of the women that get breast and ovarian cancer, so that is something to keep in mind. To know that this awareness about our health and what is normal, and our ability to talk to health care professionals is good for all women and all families to have that conversation.
What is your personal story with your hereditary risk and how you learned about it?
I learned seven years ago when my mom was diagnosed with ovarian cancer. It was something that we weren’t really aware of was running in the family at the time, which was odd because cancer was definitely something that was talked about a lot in my family — specifically on my mother’s father’s side. My mother’s father was obsessed with colon cancer because there was a lot of colon cancer in his family and he really believed that he would eventually get colon cancer and pass away from it, which was not the case. My grandfather did not inherit a genetic mutation called Lynch Syndrome, that did in fact run in his family, but he didn’t draw that card. He drew a different card: the BRCA card and we didn’t know because a lot of the energy was so focused talking about colon cancer.
What is the purpose of Mom’s Genes, and what can people do with its message?
I started this journey as a BRCA patient as a very young mother to new twins, and they were both girls. So, the realization of what was in front of me was right there, and there was a lot of fear. It was overwhelming and hard to manage.
What I want for my girls and my son — because these genetic mutations can run on you mom and your dad’s side, and my son can be a carrier as well, and have important implications for his health – is to start a conversation about family history, learning what it is to be healthy, learning how to be proactive. It is something that we are constantly talking about in our family, but in a light way, in a way that enables them to access the information and process it. And it includes things you can get from your mom and your dad: freckles, height, weight. We just spent a lot of that energy developing a book, a tool, that other families can start.
What I love about the book is that is has two audiences. It has the children, who you are reading it to, and then the parents. They might sit back after reading a story like this and think, “What is my family history, I really want to ask these questions. We do have this history, I should probably ask more questions.” It is all about getting a conversation started, and I am trying to start a platform with more resources as children get older. For example, if they are going in to their gynecologist for the first time, what kind of questions are they thinking? Maybe they grew up in a family with high risk, a mom with breast cancer, and how does that impact their decisions. What if they are thinking about going on birth control and heard that it could increase their chance of getting breast cancer, which might not necessarily be the case.
They are going to have a lot of questions. So, I think as we open the doors to a conversation and start talking about family history and break down those barriers that exist a few generations ago. If we start those conversations now and open that so that even young ones can start thinking about it and coping mechanisms and building a better understanding of what it means to be healthy and what it means to be your own advocate, I think we’re all better for it. So, that’s my goal and what I am trying to create with the book I wrote with my two little ones.
We really sat down as a family and created the book. We drew the pictures together. We sat down with all of these ideas of what it meant, all of these traits, and what it would look like if you were going in to the doctor. Then we sent it out to an illustrator to make it look professional, and they were integral in having the conversation. But it was based on the conversations we were having as a family and opening those doors for us.