Jan: BRCA1 positive and feeling like a ticking time bomb

Jan is a Language industry professional, wife and mother of two. She hails from Ottawa, Ontario, Canada. 

Written by Jan 

“It’s okay, Mom, maybe they’ll grow back!”

My eight year old daughter’s words of hope in 2011 after our girl-to-girl chat. I explained that since breast cancer runs in my genes, I was contemplating preventive surgery to ensure that I’d be around for as long as I could to watch them grow up. I split a gut laughing at her comment. She was not amused and stomped off in disgust at the uncontrollable laughter coming from me after I heard her response. She didn’t realize there were tears behind my laughter.

It’s hard to know how much to tell an eight year old about cancer. I wanted to be honest, prepare her, yet the Mamma Bear in me wanted to protect and shelter her from all fear and bad things. Guess it’s part of letting go gradually and teaching her to accept, overcome and conquer fears, accept speed bumps in life and face them. Guess I wanted to be more open about cancer than what I was told at 11.

I’ve grown up with many fears, including fear of the next doctor’s appointment, fear of not knowing if or when Cancer might come knocking at the door (note to self: go shopping that day… 😉  ). Praying that I have not passed on the gene to my daughter, or even my son, fear of the phone ringing following a mammo, MRI or biopsy. The call this July that filled me with relief when they said the mammo was fine. Then, the call this August that the MRI a few weeks after the mammo was different. This time I had to go in person to discuss the results. I’ve been fortunate to be given results of “okay” over the phone for years. Not this time.

So off to the DR. with a positive attitude, feeling I can face whatever it is. I’ve always been fascinated by languages and wanted to absorb and learn them like a sponge. But when I walked in for the results, I felt as though I was in a foreign country. I needed a medical interpreter. Rather, an English medical interpreter. Rather, an English, medical, cancer interpreter. Are there categories for that on LinkedIn!? On GoogleTranslate?  Sorry, I don’t speak cancer but I guess it’s time I learned.

The two-pages were chock full of words so foreign to me in my own mother tongue and they translated into very little for me.  Deciphering and translating hand-written WWII documents came easier to me than what lay before me. I spent most of the valuable appointment time asking the dr. what the terms meant: BI-RADS 3, progressive linear non-mass enhancement, indeterminate microcalcifications; multiple scattered foci of enhancement. What the heck?

So I get the usual “Recommend for follow-up imaging in six months to ensure stability” suggesting it may not be “stable”, yet with “likely benign”.  I respect that the medical profession has guidelines, timelines, procedures they are mandated to follow based on current research, statistics and knowledge, and the “average person”, but I, along with so many others, do not fall into the “average person” category.  I’ve felt like a sitting duck at a carnival shooting gallery ever since I tested positive for the BRCA1 gene in 2003. I’ve felt as though I’ve been playing Russian Roulette with my life in not opting for preventive surgery, struggling to make the leap, being told by close friends I would be butchering my body. The doctor asked me, “why are you worried this is cancer?”

I appreciate doctors may limit mammo’s and MRIs, but right now, I feel like a science experiment in a test tube waiting for one element to be added to the formula, with an outcome nobody can predict, could be a dud, could combust. Kind of like, “Oh, something is there, we can’t determine anything 100%, may be nothing, may be something, let’s put it in the limbo category, and the patient can just go home and wait 6 months and then we’ll have another look see”. I think not.

In January 1977, my mother found a lump. Doctors told her that 40 was too young to get cancer, to just run along home and be a mom and not worry about it. She was a nurse, she persisted. Doctors finally listened. By early April, the lump was apparently the size of a grapefruit and she had her left breast removed that same month. This was followed by a few months of treatments and by August she was gone.

I grew up not thinking that much about the c ancer. I knew my mom’s mother and aunt had both had cancer too. Around 1996, we found out we had another full sister who was given up for adoption at birth, and was diagnosed with breast cancer in her mid-30’s. Next year she’ll be a 20-year survivor. After tracking us down, she learned that breast cancer took our mother at 41. After she tested BRCA1 positive, I waited until after my daughter was born in 2003 to get tested and, lo and behold, BRCA1 it was.

Since then, I’ve undergone careful screening for several years. At 40, I was contemplating opting for a full hysterectomy and mastectomy but instead, I chose to have another child and am blessed to have a very spirited son who makes me laugh, despite the challenging days. At 48, I still face the unknown, a state of limbo, like free falling with no chute, not knowing if there is something growing inside. If so, I am grateful that it would be caught early and that options exist, not to mention tremendous support.

I am grateful for individuals like Teppi (blog author) who, despite incredible challenges, makes the time to share and build awareness, ease our fears, teach us to laugh more and that we are not alone, we have people and resources we can turn to for hope.

I am VERY grateful that I just discovered that my neighbour is a nipple tattoo artist to help guide me with options!

I am very grateful for everyone involved in the creation of the upcoming movie “Decoding Annie Parker” and can’t wait to see the movie. Watching the trailer gave me shivers and flashbacks to when I was 11, when I was told “Mommy has Cancer”. There will be tears, but also laughter. It’s not a crime to be born with the genes we have, nor should we be judged by anyone for talking about them.

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