Today’s story comes from Theresa Jordan of Seattle, Washington. She was 32 when she learned that she carried the BRCA1 gene mutation.
Describe your BRCA journey in one sentence: Using my knowledge to make wise and informed choices with the understanding not everyone will agree or understand all while trusting that God has a purpose to use each experience for His will.
What made you decide to get tested for the BRCA gene mutation? My Grandmother died of Ovarian Cancer at the young age of 72. During the time my Grandma was fighting ovarian cancer there was a time she ended up in ICU after a routine procedure. We (my mother and I) were in a position of digging through all her paperwork to find her will and directives as we knew she did not want to be put on life support and the doctors were talking about some pretty dramatic measures (thank God we didn’t ever have to make those choices). In searching, we found something that resembled a family tree, but what it outlined was all the family that had been diagnosed with either breast or ovarian cancer. Besides my mother (who is an only child) and myself, we are the ONLY family members who have not had cancer (although we knew our direct line was cancer-riddled, we did not how many and for how many generations). We are talking my great-grandma (who died at 37), her sisters and each and every one of their children and then into the next generation (my mom’s cousins, etc). That was the first time we learned about a genetic mutation called BRCA and that several of our family had been tested for this genetic mutation and were positive; my grandma never had the test. Eight months after her passing, I received a positive result. It was the most heartbreaking thing to witness her suffering and ultimately her death and then to find out that her fight could have been avoided and that she could have still been here to share in our lives. I wanted to have the knowledge so that I could do what is best for myself and my family.
Are you BRCA1 or BRCA2 positive? BRCA1
What did you think/feel when you discovered you were BRCA positive? How did it affect those around you? I had a gut feeling I would be positive, maybe it is me being pessimistic or my way of protecting myself, what I wasn’t prepared for what the worry I would have for my children. I took it hard because of them, they are both still too young to get tested, but I pray continually that they would be spared the gene. In a sense I also felt relief, a relief that I did in fact have some control over this gene; that it didn’t have to ruin me and I could stay in front of it and therefore have the power. I look back on that time and realize it was a very confusing mix of emotions.
What surgical procedures (if any) have you undergone? December 30, 2013, I had a complete hysterectomy and oophorectomy (ovaries, tubes, uterus, and cervix removed). I have decided that for me personally I am not ready to have a mastectomy, so I continue to do “preventative screenings” which means breast MRI’s and mammograms every six months.
How has your BRCA gene mutation changed your life? In addition to the fact that the first few years felt like a cycle of doctors doing the preventative screening which at that time also included pelvic ultrasounds and blood work to monitor my CA125; I also felt like I was faced with making really big life choices at an early age. I always told myself I would give myself until I was 35 and once I turned 35 I decided the time was right for surgery. Prior to that, I have had two scares… one with a breast MRI and Mammo requiring a biopsy (guided by MRI which was not fun) and also some issues with cyst and fibroids (I quickly found myself pretending to be an ultrasound tech looking for anything abnormal on my ultrasounds and when anything appears I would find myself living in a place of what-ifs). Even to this day, the preventative screenings are a reminder that I am not within the normal percentage of women and there is always the questions in the back of my mind… what if they found something? The largest impact that I have experienced is the surgical menopause which came on fast and hard and it feels like it took me an entire year to get back on my feet and take back control of my body and life. This, like the BRCA finding, is different for each person facing it, but because of my young age and the lack of knowledge my peers have about menopause, felt like a very lonely process for me. Today, I feel like I have more control over my body, health, and life than ever and feel very positive about the direction in which I am going. I trust that there are a plan and a purpose for me in this life beyond my understanding and I am filled with joy and no regret.
If you could share any tips or advice with women who have just learned they have the BRCA gene mutation what would it be? Be patient with yourself, don’t’ rush into decisions, read more information that you feel you need, ask questions, unplug from it all sometimes and don’t let it run your life!