I decided that I’d like to start recording my thoughts in a journal as I go along this BRCA journey. Someday my girls might want to know how or why I came to the decisions that I have. Maybe being able to read my thoughts will help make their own decisions easier one day. As I take excerpts from my journal, I'm going to try to remove names of family members to respect their privacy. Hopefully, you can still get the point.
Unlike most women worried about family influence on breast cancer, my concerns come from my father’s side. The first doctor I saw as an adult prior to getting the genetic test results back, dismissed my concern because it wasn’t my mom who had the diagnosis. Why is this? You get 50% of your genes from Mom and 50% from Dad. So why is it assumed that you got your breast from your Mom? Well, mine came from my dad.
His family has quite the history. However, getting an accurate account of it has been an interesting task. There have plenty of family legends, personal thoughts, and speculations as to the whys and whens of our hereditary breast cancer. In fact, I grew up with the assumption, as morbid as it may sound, that it was not a matter of if I ever get cancer, but rather when I get cancer. This wasn’t in a scary or even negative way, it was just a matter of life that I grew up realizing. I saw so many people around me go through treatments some with complete success, others not. I heard the stories from aunts and uncles, so that it was just a fact of life. But when I got to an age where I actually wanted to do something about this, getting an accurate record proved more tricky.
My dad has thirteen siblings spread all over Wisconsin and Upper Michigan. All but one of these siblings had at least 1 child, several had as many as 4. Because of the family’s sheer size, the entire group has not gotten together for a holiday gathering for as long as I can remember. There were the occasional Christmas visits to Grandma and Grandpa’s where 3 or 4 families would overlap, a wedding in which a good portion of the family would be present, and of course funerals, but none of these situations are the prime time to say “Hey, by the way when was your diagnosis again?” or “Was yours Ductal or Lobular?"
The only person to this day who I believe has an accurate account it our Genetic Counselor Sumheda Ghate. When you sit down with her and see it on paper, it is pretty scary. She has this stack of papers that she stretches out and takes up almost the entire table. Each family member is listed there on a branch with small circles with plus or minus symbols, some blackened, some clear, all meaning some sort of code about our cancer history. 6 out of 13 siblings lives have been effected by breast cancer along with Grandma, Great Grandma, the list could go on and on.
One aunt's life was taken far too soon by cancer. We all wondered why her life ended so soon. Why did she develop cancer at such a young age---just 31? Why did it move so quickly? In her struggle to understand it, another aunt decided to forgo the family legends and look to actual science. She forked out the thousands of dollars to get the genetic testing completed. Maybe it was her twin connection, maybe it was her concern for her own health, or maybe it was her way to cope with the deaths of her sister and mother, who knows. Whatever motivated my aunt to get that original test done, I’m so thankful she did it.