Yesterday I had my appointment with the genetics counselor to determine if I'm a candidate for genetic testing for the BRCA1 or BRCA2. Apparently, these are genes that everyone has - they are the genes that fight the cancer tumors. But in some people, the genes are mutated and don't work properly. I've always heard them referred to the Breast Cancer gene, but they are also the genes that, if mutated, can result in ovarian cancer.
I have to admit that I was appalled at my lack of knowledge about my family history, at least on my mother's side. Even when my mom and I still communicated, she was not very forth coming about her health. Somewhere I have a half sister. I have no idea what her medical history is, nor do I have any way of letting her know about mine. If I have the "gene" then she could have it too - because if I have it, we have know way of knowing if it came from my mother or my dad.
I've always known more about my paternal side of the family. That's the side I favor - at least in looks. On that side of the family, high blood pressure, high cholesterol, and heart disease are the family legacy. Thats one of the reasons I worked so hard to lose all that excess weight (did I mention that one of the stinking side effects of tamoxifen can be weight gain? Ah but that's a rant for another day). I figured my battles would be against heart disease.
The result of today's 30 minute appointment was that the chances of my having the mutated gene are about less than 5%. Granted it's a small percentage. Perhaps not worth having the test done. Except it just leaves one more unanswered question.
If I do have the mutated gene, then the chances of the cancer returning or appearing in the other breast increase. The chances of my getting ovarian cancer increase. (Ever since my mother-in-law died of ovarian cancer at age 48 that's been one of my worries.)
What are the benefits of the test? Information. If I have the gene, then there are precautions I can consider for the future. (Everything I've heard about ovarian cancer is that by the time the symptoms show up, it's almost always too late. Better screening might be a guard against that.) A person who has the mutated gene has a 50% chance of passing it to their children regardless of their gender. So let's say that my mother-in-law had the gene and that's what resulted in her ovarian cancer. She might have passed it to my husband. If I have the gene, also - well I've never been good at math, but even I know that ups the percentage that my boys will have the gene.
What is the harm, if any of having the test? There's only one I can think of - I'll freak out about the needle, but that's nothing new. I've lived with needle phobia for years and it's only one vial of blood they will need to take.
What is the harm if I don't have the test? Somewhere in the back of my mind I'll always be fretting and wondering. I'll be ignoring my own advice about using all my resources - failing to gather as much information as I can. If I don't have the test and I do have the gene, I will have missed an opportunity to better plan for my future health. I have to think about my boys, too.
I'm fortunate that my insurance will fully cover the costs of the tests (at least that's what the counselor said). So money is not an issue - jut a big needle. (Or at least big in my mind.)
Even though I'll sleep it on it for a few nights and pray about it, I guess it's not really much of a question. For me, the fear of the unknown is worse than the fear of the known. Information is power, right? Wonder if that wonderful nurse from Memorial would be willing to be the one to do the blood test?
What do you think? If the odds were less than 5% would you still have the test?