Tuesday, October 30, 2012

Why test? What does it mean to know?

  I am by no means an expert. You are welcome to take what I say with a grain of salt even. I don't claim to have all the answers. I am certainly not a journalist and it will show by my lack of grammar. I am simply sharing my story to help others who will walk where I am going.

                              Deciding to get tested in my opinion was the hardest decision.

   How I came to get tested was really kind of weird. In June 2012 I had some pain in my left breast. Very VERY unusual for me. I never experienced pain when I was pregnant. My breast were something that just existed as part of my body.  So pain in the left one was a little alarming to me. I mentioned it to a friend who happened to be a MD. He asked a little family history of breast cancer. I had none. He then mentioned going to my MD to get it check out just in case. I went to my primary care physician and she did an exam. She told me I had lumpy breast and she would rather we take a look just to make sure. Me, honestly I was completely fine with that.
  As I sat there waiting for my mammogram reality punched me in the stomach. I am waaaaaayyyyyy to young only 29 years old. I have no family history that I know of. What the heck am I doing sitting here waiting for them to tell me if they find anything abnormal. The mammogram was a welcomed interruption from my overactive imagination of worst case scenarios. As least they needed some questions answered and pulled me out of my brain long enough to focus and realize I don't have cancer yet. At least that I know of. After the mammogram and ultrasound I cried. I cried hard I was terrified. What did I just do? What kind of results would I have? Do I have some sort of family history that I just didn't know about?
   After calming down I remember my aunt knew some more information about what my paternal grandma had passed away from. I simply thought "I need to talk to her". As I started this conversation I realized while breast cancer didn't run much in my family my grandma passed away from Ovarian cancer. My grandma had tested positive for the BRCA1 gene. Each of her children had gotten tested except for one. My dad.
                          Aunt K was negative, Aunt J was positive, Uncle W was negative.

  It wasn't a very well known well studied test when they were tested. After I got off the phone with her I knew. I needed to get tested. I just knew that was the path I should take. However as I started to think about genetic testing there was one question that kept ringing in my head "what would I do with the results.". I am the type of person who woud obsessively do exams even at thought of having the gene. i would mentally go to the worst case scenerio it's cancer. Every little imaginary lump, every twinge in my lower abdomen every little everything would be cancer.  I felt as though I would be a victim to the news unless I had a plan. In my heart I knew if it came back positive I would choose to take my breast off. Sounds drastic I know but once I prayed Iknewthat wasthe right path for me.
  So now I was ready to convince my PCP(primary care provider) that I needed the testing done.
   When she walked in the door. I started out by saying "I think I should get genetic testing" she simply said "I agree". I then continued to try and convince her only to realize that she had said yes. She wrote up the referral and it was off to wait for a call for the appointment to see a genetic counselor.

  It was interesting to see the counselor. She gave me all of the information about what it means to test positive or negative. If you test positive you have an 87% chance of developing Breast Cancer and a 60%chance of developing ovarian cancer. Each of these statistics are purely that and vary from year to year give or take.
 After the informational session and analyzing my mental stability I still decided to get tested. So weird to think a rinky dink little vial of blood can change your life for forever. Not just your life but your children and their children it is something that keeps on giving.

The Wait. Waiting was pretty easy since I work at the local high school as a coach for our color guard team. The waiting for once seemed the easier part. While waiting some days I would think it is going to be positive. I would go to the absolutely devastating place. How could I face this. Then the other days I would consider myself grateful that I am negative. That I really really escaped fate. In the end there would only be one outcome. As I got on the phone for the genetic testing results my heart sank. I just knew it.

I was/am BRCA1 positive.