So there IS a reason I entitled my blog "The Hot Pink Mutant". I will start back at my sisters wedding when I was told by family that there was this thing called a "gene test". I was obviously intrigued and had NO idea what the heck it was, but they were excited, so I was too! I later learned that one of my second cousins who had cancer, was tested to see if the cancer was caused by a gene mutation in our family. The tests came back positive for BRCA1. This stands for breast cancer and there is either type 1 or 2.
This past summer when we were on vacation back home, I was able to talk with my mom's sister, Susan, about it further. She had ended up testing positive as well, and had preventative surgery done that she was very open to talking about. I actually got excited to finally know that there were ways to test and even prevent having the same fate as my mother. Knowing that Joey and I are done having kids I was ready to make some serious decisions. Was I ready to get tested? What would I do if I was positive? What did this mean for my family?
I decided that I DID want to get tested and as soon as possible. I saw my regular doctor at the Navy clinic and she referred me out to a Cancer Genetic Councelor at Yale in New Haven, CT. I called and they were very quick to help me get the process started. They asked me a few questions, like had the test been done before. This was important because an initial test has to be done on a member of the family, most likely someone who already has cancer, so they can locate the gene. The initial testing costs thousands of dollars and family members after that only pay about $450. I got a copy of my cousins results and emailed them to her. She set up my initial appointment for the 4th of October and a results appointment for the 25th of October. I couldnt believe that they were so helpful and it all was going to happen so fast. When I got off the phone after making the appointments I was shaking and couldnt stop crying. I wasnt scared, just overwhelmed that I was able to DO something to know my fate. I called and talked to my Aunt Susan who told me that yes, it is scary, but it is also empowering to KNOW.
October 4th rolled around and I left my kids with my good friend Sara. Joey was able to get the day off of work to go with me. I thank GOD that the command is good about family and these kinds of situations. We found the place easily and walked hand in hand into the building. The waiting room was small and quiet and the nurse greeted me with a friendly, knowing smile. We were then lead into a small conference type room with my genetic councelor Rachel. I was feeling really good and nervously excited. She started by going over my entire family tree and history of cancer. I have a pretty big family because my mom has 3 sisters and 2 brothers and I believe my dad has 2 sisters and 3 brothers (im not as close with them).
The most important part for me, was when she explained cancer and this gene I had heard so much about. Im not an expert on it, but what I understood is that we get some genes from our mom and some from our dad. There was a 50/50 chance that my mom had given the gene mutation to me. It is located on a certain strand so they know where to look. Basicly, what this mutation does, is it causes a protein made to fight cancer cells, to not form correctly. This in turn leaves you more suseptible to cancer. This certain mutation is responsible for breast and ovarian cancers. I dont know the percentages off hand, but basicly anyone that tests positive for this mutation BRCA1 or 2, has an extremely higher chance of getting cancer in their liftetime. Somewhere around 55-87%. I will post the link to the sites I have been looking at when I figure out how to work this whole blog thing better!
After learning all of this, she then discussed what my options would be if I was positive and asked if I had decided what I would do, if I indeed was. I hadnt thoroughly thought everything over, as I didnt want to freak myself out, but I knew what my options were. I most likely was going to follow in my aunts footsteps and get a prophylactic mastectomy, a preventative removal of healthy breast tissue. She was surprised at my knowledge and I even surprised myself at how easy it was to SAY. The easiest part of the appointment was when I got my blood drawn, it was so strange that it was that simple. THEN the waiting came, I had to wait 3 weeks before getting my results. I was more anxious about it than anything, I was just ready to finally know. Was I a hot pink mutant?
You are correct about the number of aunts and uncles on your dad's side :) I'm so proud of you for being brave enough to get something like this done. It takes a very strong person to admit there might be a problem and do whatever they can to fix it.
ReplyDeleteI knew there was a brother I had never met, or at least dont remember meeting! I talked to Trish and she told me his name is Gary and he lives in Montana. Thanks :)
ReplyDeleteThis is Scott Christinas dad
ReplyDeleteYOUR MY FRIKKING HERO.
I can not believe now strong you are. and to blog this whole thing is just amazing
and were all wearing pink tomorrow even me :)
love you and have a good recovery,
Joey you have one hell of a woman there brother
cant wait to see you all again.
big Scott in Spokane