Where Are My Peeps?
I have been writing a monthly blog for Rethink since August of 2020 about being a caregiver for my daughter Adrienne after she was diagnosed with triple positive breast cancer at 27 in March of 2019. Some of the submissions I have written have included parts of conversations Adrienne and I have had about her experience, and although I write from my perspective, often the emotions I speak to are shared. Late last year, Adrienne asked me if it would be possible to start telling her own story in her voice with me as the ghost writer. With Rethink’s blessing, this is my first of what I hope will be many times that I am doing just that.
Where Are My Peeps?
When I was diagnosed at 27, I had no idea women my age could even get breast cancer, and all the medical professionals I dealt with had zero experience with it either, so we were all walking down a new path of uncertainty. When I sat in the oncology clinics there was no one who looked like me. Plenty of people who looked like my mom, who was with me every step of the way, but they were sitting in the treatment chairs themselves or accompanying an older person who I can only assume was their mother or father. In almost every single situation I encountered along the way, I was an outlier, the “exception that proves the rule” example, and it was a very lonely place to be.
When I did research about my cancer, I found some scary and eye-opening information. From what I gathered, triple positive breast cancer tends to be more aggressive in young women and my treatment plan was just as aggressive. My oncologists got excited about small percentage differences in survival rates when they spoke about certain options they wanted to use as part of their strategies, and sometimes I would sit frozen trying to absorb those details. My medical oncologist told me that had I been diagnosed about five years earlier he would have been seeing me again with a recurrence within two years, but that I am in a good spot now because one of the treatments I would be getting was, in his words, “a game changer.” As treatment progressed and I began to realize how much cancer would inform the rest of my life, I knew I needed to find a community of my own, and when I found Rethink, I thought “YES! Here they are! Here are the ones like me whose stories I can learn from. Here are the young women who can stand as my role models, who can give me hope that five or ten years from now I’ll still be around.” I have been comforted by this amazing group of women that I have the privilege to know, and by sharing their knowledge and experience they have helped me immeasurably.
And yet, as much as it has helped me to know I am not alone in being a young woman who has experienced breast cancer, I still feel like an outlier.
When I join in conversations with other members of this club no one wants to be in, often in spaces hosted by Rethink, I find that the majority of triple positive participants are living with metastatic disease. For some, it’s because the cancer wasn’t found until it had unfortunately already spread, and for others it’s a recurrence because they were diagnosed that five years earlier that my oncologist talked about. There are shared stories of women who were diagnosed five, ten, even almost twenty years ago and are still in remission, but in all the ones I have seen or can remember, their original diagnosis was not triple positive. So, the question that keeps popping into my head is…
Where are my peeps? Where are the triple positive women who have become part of that golden statistic of surviving to five years, or ten, without recurrence?
I know that I am one of the lucky ones. I know that I found my lump early, and while I did have lymph node involvement, my cancer had a full response to treatment, so it was stopped in its tracks. As of now, almost three years since my diagnosis, I am NED since November 2019. I am taking Tamoxifen to help prevent a recurrence and thus far my luck has held. My medical oncologist was very clear that the greatest risk of recurrence for me was in the first two years and, although there are no guarantees, hitting that milestone last November was huge for me. I know there must be other triple positive survivors out there who’ve made it past the five year mark without recurrence, but it would be nice to know-know that when I’m looking to my future I can have hope that I will be able reach back and hold the hand of others who look like me and say, “Here we are” because someone had done it for me. I know that at the end of the day none of us really have an exact peer, that each cancer diagnosis and what it means to the life of that individual is unique, almost like snowflakes in that no two are a like. I also know that young women with breast cancer are already part of such a small community, that it can be a lot, even unreasonable, to categorize us even further into subgroups.
But please, if you were triple positive like me and you are out there, like the real Slim Shady can you please stand up?
One, two, three… GO!
Mother…Grandmother…Librarian…Military Spouse…Caregiver…Family Life Educator…take your pick! Debbie Legault was born in British Columbia, Canada to a former RCAF airman father and a Scottish War Bride mother and has lived in other Canadian provinces, Germany and California. She has been married for 36 years to a Canadian Air Force Veteran and credits him with filling her life with adventure. When Debbie Legault’s children look at family photos they often comment on how many different hairstyles she has had and that pretty much is her story, that her life has taken as many turns and led her down as many paths as her hair has changed! Her latest role is as the author of Mom…It’s Cancer, the story of supporting her 27-year-old daughter, Adrienne, as they experienced breast cancer diagnosis and treatment.