I am a healthy person.
I work out 4-5 times a week. I am a fitness instructor, personal trainer and teacher. I always knew I had a chance of getting cancer as my mother and maternal grandmother both had breast cancer and both at a considerably young age. I honestly thought that if I was going to have cancer, it would have happened by now since I had passed the age at which my family members had been diagnosed. It was something that stayed in the back of my mind, but I rarely let myself spend too much time thinking about it.
I had a mammogram in December.
They told me that I had very dense tissue and that an ultrasound was needed to see everything more clearly. The radiologist told me that looking at my breast tissue was like looking through a bag of cotton balls. Apparently it’s supposed to be like looking through an empty Ziploc bag. She also suggested I should meet with a genetic specialist. I didn’t even understand what that fully meant or what the reason was, but I went in January for my annual checkup and pap smear with my OB/GYN. After looking over my results and notes of the mammogram and carefully reviewing my family history of breast cancer, she asked if I had ever been tested for the BRCA gene. I didn’t even know there was such a thing. She then proceeded to tell me how it was a type of breast cancer gene, and not thinking much of it or that it would really affect me, I agreed to the test.
Then came the day my life would change immeasurably.
I got a call from my OB/GYN’s nurse and learned that my doctor would like to see me as soon as possible. Every woman knows it takes a while to get in to see your gynecologist, so I instantly thought I must have an irregular pap smear. NOTHING could have prepared me for the information she had waiting for me when I was called to her office. She began to explain that I had tested positive for the BRCA1 gene. My mind just couldn’t process all the information she was telling me. She explained that this put me at a very high risk for breast and ovarian cancer, and a tiny risk for pancreatic cancer.
My reaction was nothing. I WAS NUMB. I couldn’t understand what she was telling me, and I was totally confused. She looked at me and proceeded to tell me “You realize these are very high numbers, don’t you?” I just nodded, but truthfully I didn’t understand because I wasn’t processing any information. My mind was in a fog; I was still confused and in shock. I just remember staring at her and asking, “What do you want me to do with this information? If this were you, off the record, what would you do?” She replied, “I would have surgeries, because I have kids.” I began to cry. I tried really hard to process this information on my drive home. It confused me because I didn’t actually have cancer, but it appeared likely that one day I would. I just couldn’t stop thinking, “What have I done in life to have this gene?” I kept thinking, “I am so healthy, I watch everything I eat … how can this be happening to me?”
Then the research began.
After I told my husband and best friend of the news, I immediately began to research all the information I could find on the BRCA gene. My friend told me something that really made me think about it from a different angle. She said, “You are so healthy on the outside, don’t you want your insides to match?” She was completely right. After REALITY finally set in, I thought about it, yet AGAIN. My doctor and friend were right; I have KIDS, and they rely on me daily for everything. I am their everything, and they NEED me. It finally just hit me like a brick; I need to have a double mastectomy so that I can be there for them as long as possible.
I began researching doctors through my physicians, the internet, and people who have gone through similar surgeries. As I began telling people my news, doors began to open and a huge and wonderful support system grew around me. After a long search that included interviewing multiple surgeons, I found my general surgeon who would perform the mastectomy portion and the plastic surgeon who would perform the reconstruction portion (insert silicone implants in place of all the tissue being removed). I have been very blessed to have been placed in the hands of such world renowned surgeons. I am eternally grateful for all of the people who helped me arrange the best team of surgeons who are collaborating to keep me healthy. After meeting with my general surgeon, I know that because of the BRCA1 gene, I CURRENTLY have an 80- 85% risk of developing stage 3 or 4 breast cancer. That percentage will only increase as I get older. We’ve discussed that now is not the right time to remove my ovaries, but when I turn 40, I will undergo surgery to remove them to reduce my risk of developing ovarian cancer as well.
I am LUCKY.
Five months from that insane day in January, I’m finally able to see that I am LUCKY. I get to choose to be here for my kids and prevent this horrible disease. So many women aren’t this lucky. I don’t want to have to fight for my life and have my kids watch when the results might be tragic. I don’t want to have to be a survivor if I can prevent it. I am a PREVIVOR. I want to to use this situation to help others who were like me and didn’t know this gene existed and encourage others to get tested who could potentially be at risk. It doesn’t make preparing for this surgery any easier, but it does make me at peace with my decision.
As my surgery approaches early tomorrow morning, I am emotional as I prepare for one of the hardest things I will ever do. I told my 11 year old daughter that her mom was undergoing surgery that will potentially be saving her life. What I didn’t tell her is that she and her little sister may potentially be carriers of this gene as well. So, I will still go to bed tonight like I do every night, with a positive mind and confident attitude knowing every little thing will be okay … and that tomorrow I will no longer be at risk.
Tomorrow is a gift; I want a lifetime of tomorrows.
Rachel lives in New Orleans with her husband and two daughters.
Strength and courage to you and your family!
Rachael, I will be praying for you. You are a gift to the human race. Richard H. in Houston
Thank you so much for sharing your story and your bravery! –
How does it feel knowing your mother went thru the same thing and for the same reason: she had kids . Unfortunately back then the superb reconstructions available to you were not an option for her. But that maternal instinct to live fir your kids …and grandkids has never left her. May
god give you the wisdom someday to make contact and thank her for choosing to live for you and grant you the grace to be part of her life and allow her to know your family. I will celebrate that day fir both of you.
With congrats and pride and love from Ivy.. By the way….Hesther is my adopted daughter !!
God bless you Rachel. I had no idea until I saw the facebook post and read this story. You and your family are definitely in my prayers. Stay strong!
I admire your strength and courage Rachel! You inspire us!
I am glad that you have processed this information, and ultimately you were empowered by it. However, I would also encourage individuals to consider more formal pre-test and post-test counseling with a genetic counselor. Genetic Counselors help individuals and families understand their family history, testing options, post test management recommendations, and the psychosocial aspects of this information. The National Society of Genetic Counselors has a Find A Genetic Counselor link on their website http://www.nsgc.org
You will do great! I had mastectomy with reconstruction on May 15th of this year. Still recovering but the surgery wasn’t as bad as I had in my head. Not a lot of pain for me. I was taking only Advil second day post op and I’m the biggest whimp known to man. I’m praying for you to have an uncomplicated surgery and recovery!
Stay strong and positive!
Reading your blog is amazing!
I’m 33, just tested BRCA 2 positive in April. My first surgery is in June.
I pray that all goes well for you! I’ll be thinking of you! Just take it day by day. Think positive even in the toughest moments!
You’ll do great!
Thanks for sharing. I hope your recovery is going well.
I tested positive too. I am in my 40’s so I made the difficult decision to have my ovaries removed, because my sister had ovarian cancer. Now I really have to really consider the other surgery and it is scary to think about.
Now, hearing your story makes me think about it more. My daughter is 5 and I want to be here for her for as long as possible.