Welcome to my blog. Also, what is this blog about?

The name of this blog is C is for Chaya. Chaya is my Hebrew name. Translated, it means life (feminine form).

For some people a “big C” stands for Cancer. But not here. And that’s how my story begins.

On April 7, 2021, at the age of 57, I learned that I carried a BRCA1 genetic mutation.  In plain English, I learned that I tested positive for the “breast cancer gene.”

No, I don’t have cancer. 

Now that you know that, I can tell my story.  It’s the story of thousands of women, but one that is not often shared, at least not that I’ve seen. 

I decided to start this blog for selfish reasons.  I need to put down in words all the thoughts, rationalizations, emotions, that have been running through my head every day since I first heard the news no one really wants to hear, back in April 2021.  I need to process this, to have a place to review it all.  If a few people can gain something from my words and my history, or if my decisions and thoughts can help someone else reach the decisions that are best for them, then I am happy to help.

I’ve learned a lot more since April 7.  I learned, for example, that everyone has a BRCA1 gene.  What I have is a mutation of that gene that significantly increases my risk for several kinds of cancer.  Therefore, I no longer say that I am BRCA1 positive or have BRCA1; I say that I have a BRCA1 mutation. 

I’ve also learned that there are several BRCA1 mutations.  Therefore, I don’t say I have the BRCA1 mutation, but that I have a BRCA1 mutation. Many BRCA1 mutations are harmless.  Mine is what is known as pathogenic, ie, capable of causing disease. My mutation is c.5266dupC.  This means I have a duplication of C at nucleotide position 5266.  No, I don’t really understand that either.  What I do understand is that this is one of three well-documented mutations associated with Ashkenazi Jews, with an overall frequency of 0.5% in the that population.  I am 100% Ashkenazi Jewish, with my grandparents and great grandparents coming from Russia, Poland, and Galicia (now Ukraine).  Thanks, Grandma.  (More on that later.)

Over the next several posts, I will explain how this mutation was hidden in my family for so long and how I decided to get tested; what it means in terms of my cancer risk and the specific cancers I need watch for; options for reducing my risks; the specific choices I’ve made—and will continue to make—to protect my health; and more. 

It’s not easy for me to share all this.  Those who know me know that I am a fairly private person.  But I really want to share this story, because perhaps others can benefit. 

Please chime in with your thoughts, comments, etc.  I only ask that you try not to judge.  Testing positive for a pathogenic mutation is not the same as having the disease, and the decisions and options I have are much different than if I had a full cancer diagnosis.  It’s hard to understand until you have walked in those shoes.  Here, you can perhaps try those shoes on and get an idea of how it feels.