December 24, 2007 is a day that I will never forget. That was the day that my sweet mom informed our family that she had been diagnosed with breast cancer. After speaking with her physician and examining our family's history of female cancers, as we have lost many women in our family to both breast and ovarian cancer, my mom was tested for a genetic mutation (of which we were previously unaware) that as early as 1990 was being linked to cases of breast cancer where there was a strong family history of female cancers. The proteins that suffer from the mutations are referred to as BRCA 1 or BRCA 2. So, shortly after her diagnosis, my mom's genetic test came back as positive for a BRCA 1 mutation.
April 15, 2008. My mom was in the midst of her battle with breast cancer. She was fully recovered from her bilateral mastectomy and enduring the harshness of chemotherapy treatments. The next step was to meet with a genetic counselor to discuss my risk of developing breast cancer and to be tested for the BRCA mutation. That day I had one tube of blood drawn and went home to sit and wait.
April 30, 2008. After 15 days I found myself, 19 years old, sitting in a room at Kaiser Permanente with my mom and our fabulous genetic counselor (more about her in another post) awaiting the verdict. During the two weeks I was waiting for results I had begun to research what it would mean for my future should I test positive. I knew that I had a 50% chance of having the mutation and I knew that should I test positive, I would have to make big decisions regarding my future. I remember sitting in the room with my mom, she kept telling me "well, maybe you'll be negative", but I had a feeling I would not be receiving such news. Our genetic counselor entered the room, opened up a purple folder that contained the test results, and informed me that I was BRCA 1 positive. She gave me numerous pieces of literature and discussed steps that I could take to reduce my risk. I really cannot remember anything she said in the moments immediately following the news, other than agreeing that I would receive special breast MRIs and regular clinical breast exams to make sure that if any cancer did develop, it would be caught at an early stage. I also began seeing a gynecological oncologist to discuss my increased risk for ovarian cancer. After many appointments with many doctors, I felt confident that we had implemented the best surveillance plan for me.
As a BRCA 1 carrier, I face an 87% chance of developing breast cancer in my lifetime. The general population faces a 7% risk. I also face a 44% chance of developing ovarian cancer, while the general population faces a <2% chance. (These statistics vary based on what source is referenced, however these are representative of what I have consistently heard).
January 9, 2012. Today I sit here, about four years from the day that my mom tested positive for the BRCA 1 mutation. In the last four years I have spent days on end researching the risks that I face, networking with many organizations, and speaking with other young women who also face the same risk. After four long years of deliberation, I have made a very big decision. This year, assuming all goes as planned, I will undergo a prophylactic bilateral mastectomy and complete reconstruction. With this surgery I will reduce my cancer risk by 90%. I can live a normal life without having to worry excessively.
I have struggled with whether or not I wanted to broadcast my decision to the masses and after a lot of deliberation and with the support of family and close friends, I have decided that openly discussing my journey may help others. I know that this decision is not for everybody and I know that not every one can understand why someone would make such a radical choice, but I truly feel as though this is the right thing for me and if only one person learns something from reading this, I have done my part in raising awareness.
I will not let an increased risk of cancer define who I am. I am a previvor.
If you or someone you know has a family history of breast and/or ovarian cancer there are several resources available and they are resources that I utilize actively.
www.facingourrisk.org
www.bebrightpink.org
www.youngsurvival.org
Oh Carly...my heart breaks for you! But you a strong women and god would never give you something he knew you couldn't handle. Best wishes my dear, and stay in the positive!
ReplyDeleteHi Carly,
ReplyDeleteI am 24 years old. I got positive results for the BRCA2 gene yesterday, the past 24 hours have been insane. I am definitely going to go down the same path as you have decided to go. My mom also did this in 2007. You have held this on your shoulders for 4 years, I feel like I can't wake up and not think about breast cancer, and it has only been a day. My email is kionte7891@aol.com if you're interested in talking. :) good luck on the rest of your journey!
-kionte
Hi Carly,
ReplyDeleteThank you so much for sharing your story and reaching out! I appreciate your honesty and valuable information.
Several of my family members and I found out in Dec. '11 that we are BRCA 1 carriers. My family was told 4 years ago that we must carry a "mystery" gene due to our intense family history of breast cancer. However, my family tested negative. We entered a study with Dr. King's research team in Washington. Her research recently located BRCA 1 in our inverted chromosome 17. I now know for certain that I'm positive. (While others now know they are negative.)Being 41 years old I feel I need to make my decision on surgery very soon. I want to be emotionally and intellectually ready, but I also don't want to wait too long. What am I waiting for?
Thanks for writing this blog! It's been very helpful to me already. Good luck to you in your journey. I live in Orange County and see we have a FORCE group near my home. I'm hoping to get involved. Thank you so much Carly!
Jenae'
jenaerw@hotmail.com