I honestly can’t remember the exact day, but I can remember it was a day in late August 2016, when my life began to change forever. I could say it changed in March of 2015, when my best friend, my mom was diagnosed with the BRCA1 gene but I will be honest I was 20 and naïve. I tried to be the best support I could be for as I watched her struggle with the decisions she was having to make, like getting a double mastectomy or choosing to go on Tamoxifen to lower her risk. My mom eventually ended up choosing to go for the full double mastectomy, but trust me it was a strong very personal battle for her and she also decided to have a full hysterectomy. She had a partial when I was in middle school so that choice wasn’t that hard for her. Through that year, I watched my mom struggle with the reconstructive process. In and out of the hospital because her body kept rejecting expanders. I’d say my mom was in the hospital about 8 times between July 2015- December 2015. The doctors decided to take a break on the reconstructive process and wanted to remove her Fallopian tube December of 2015, thank goodness they did because they found a microscopic tumor in her fallopian tube…what they are now considering the beginning stages of ovarian cancer. Luckily, my mom had a wonderful team of doctors who even had a conference call with my family after hours and gave my mom the option to under go chemo therapy or be monitored every six months. For the quality of life she chose to go the monitoring route. Since she began her journey, she is starting to gain confidence back after undergoing DIEP- Flap reconstruction and is beginning to enjoy her new life with her friends.
Now….remember how I told you I was 20 years old and naïve? Well I also thought I was invincible, that I needed to be tested and I needed to know then and NOW if I had the BRCA gene. July of 2016, I went in for my first ever pap (oh the joys of womanhood), I had just turned 21 in February and I’d be lying if I said I wasn’t enjoying my final year of college going out and singing karaoke at midnight after one- two many margaritas with my best friends wasn’t a weekly occurrence. Anyways, my mom did her due diligence with wanting to get me the best doctor out there due to our family history, so she was able to get her doctor who found her tumor to take me on, she is one of the lead specialist’s and researcher’s at University of Colorado Anshutz Campus. She explained to me that since I had a primary relative with a BRCA1 gene (my mom was the first ever in her family to be tested by the way) she wasn’t referring me to genetic counseling and we were testing me that day. My “invincible” self thought “okay great, lets get her done!” and boy let me tell you….I needed that genetic counseling.
As I said before, I can’t remember the exact date but it was a day late August 2016…it may have even been a Tuesday. I was in the car with my best friend who had just moved to Colorado from Connecticut and we were going shopping when I got the call…”Hi is this Katie?” “Yes, this is her” “Hi Katie, so we got your test back and you are BRCA1 positive. We’ll be sending you an email so you can begin your plan of care in our breast center, start your preventive screening which will include a yearly CA125 test and ultrasound. How does this sound?” I’m sorry what, they’re telling me that basically the way I will view life has changed forever and they’re asking me how it sounds?! It sounds like SCREW THIS but there was no going back. Let me tell you, in that moment and from that moment on I have been everything but invincible.
Being BRCA1 positive means both my mom and I are at an increased risk of developing certain cancers, mainly breast and ovarian cancer. Sure, it doesn’t mean we will for sure get cancer, you can be BRCA1 or BRCA2 positive and never get cancer but it does increase our risks significantly. It was a 50% chance if I got the gene from my mom, and it doesn’t matter whether your mom or dad has the gene. In my family’s case my mom got the gene passed from her dad who then passed it to me, and I will have a 50% chance of passing it along to my kids.
My 25th birthday is coming up in February, and to be completely honest, I am (secretly) hoping it never comes. Can I just stay 24 forever please? Turning 25 for most young adults can be somewhat of a milestone. You reach your mid twenties and are working super hard to figure out what you want in life, getting your finances straight, dating or in my case getting ready to hopefully settle down with the love of your life. What do I see turning 25 as? I see it as things actually becoming real…I see it as a yearly mammogram that most women don’t have to get until their 40. I see anxious thoughts of having children as soon as possible so the sooner I can take care of this. People have told me, well at least you know…and yes I can’t argue with that as I fully believe knowledge is power but that doesn’t mean sometimes I just want to throw my hands in the air and cry and say “THIS REALLY SUCKS.” I’m human, and living with this knowledge is at time very stressful and sparks unneeded anxiety not only with myself, but with my boyfriend, my friends and my family sometimes. I really do think I have gotten to the point in my life where I am content (most of the time) with knowing, but sometimes I wish I was 25 when I underwent testing. I don’t feel 21 was a good age to find out. In my case, I was living in my college sorority house and found it hard to connect with others within that year. I had also watched my mom struggle with this, and I have to admit that I have thought to myself plenty of times… “Is this what my future looks like?” Since my diagnosis I have also lost two very important people in my life to cancer, one being my grandpa who carried the gene, the other being an aunt of mine who passed from breast cancer as well, which has made this even more of a worry in my life.
I wanted to write this blog post to give a voice for the younger women who have been diagnosed with a BRCA gene. Over the past 3 years since I’ve known of my gene status, I have found little to no resources for women or even men my age who have been tested and came out positive. I want any other young woman or man who is considering being tested that your not in this alone. Every emotion you have is valid, and you deserve to have moments to raise your hands in the air and say “THIS REALLY SUCKS!” I feel as though being a younger woman who knows, I am not fully taken seriously and people don’t realize the actuality of this diagnosis. I worry about the day, I have to tell my children of their risk..but I pray that when that day comes there will be even more advancement in research and we will not have to worry.
If you’re a mother reading this struggling about how to go about getting your kids tested, know my mom and I are here. If you are a daughter or son struggling about being tested…I am here. If you are young, with a positive diagnosis and are feeling lost please know I am here…younger people who have found out they carry a BRCA mutation deserve support and voice too, we may not have had cancer yet or undergoing our preventative surgeries…but it doesn’t mean that we aren’t struggling too.