Genetic Testing — Holding the Key to Survival
I can’t remember much about being nine years old, but I will never forget Thanksgiving of 2000. My mom, Kamie Kay Preston, was diagnosed with breast cancer. From that moment forward, my life would never be the same.My mom was a very active and hands-on type of parent; she coached almost every competitive team I was on up until she got sick. After her diagnosis, in the midst of chemo treatments, she would somehow find the strength to attend my athletic events, even if that meant taking a trip to the car at half time or between games to lie down. As the weeks, months, and years went on, my mom had several ups and downs. Over time, I saw a cruel disease slowly steal my mom’s physical strength, but it could never steal her spirit.
My mom was not the first member of my family to be diagnosed with breast cancer. Both my great-great grandmother and my great-grandmother were affected by both breast and ovarian cancers. Due to our family history, my mom was referred to Twilla Westercamp for genetic testing. Twilla was a name I often heard, but I never really understood who she was or what she did.
By May of 2005, my mom’s cancer had been the worst I could ever remember. Shortly after my 8th grade graduation, my mom would be hospitalized; the cancer had spread to her brain. We began having more intimate conversations regarding several different topics from dating to the importance of attending college and, of course, the importance of getting tested for the BRCA-1 genetic mutation. I didn’t really know what BRCA-1 meant and my mom knew I didn’t quite understand the complexity of the whole conversation but she made sure I knew two things, the name Twilla Westercamp and that she had kept records of every doctor visit, surgery, and prescription from the last five years. In the weeks that followed these conversations, I watched my mom’s body slowly disintegrate. She was losing her eye-sight and had to wear a patch over one eye, she became weaker and weaker, even to the point of losing feeling in her legs. What I saw happening before my own eyes can only be described as a nightmare. My mom passed away on July 27th, 2005 leaving behind a husband and three young children ages 14, 13, and 9. She was only 40 years old.
From that day forward cancer became not just a disease, but the senseless murder of my mother. As the years passed, I never forgot those conversations my mom and I had, and the name Twilla Westercamp echoed in my head. When I turned 19 years old, I found Twilla and met her to discuss getting tested for the BRCA-1 genetic mutation. I knew the question of getting the test was not an option, but rather, an obligation. My mom got tested knowing it would not save her life, but it had the potential to save ours (my siblings, Ben and Bailey, and myself). So, I went through with the test, three weeks later I got a call that my results were in, so my mom’s best friend Brenda (our neighbor—and a selfless woman who took me in as her own after my mom died) went in with me to find out my results. Nothing could have prepared me for what I was about to hear… I tested positive. My heart seemed to drop right into the pit of my stomach and the tears started to flow freely down my cheeks. It took me about a month to really come to terms with my test result. Knowing how hard it was for my family to move on after the death of my mom, I could not bring myself to tell anyone but a few of my close friends. I didn’t want anyone to be scared for me or worry like they did for my mom. So, I began to see Dr. Janet Grange, a breast cancer specialist, every six months, essentially, behind the backs of everyone in my family. I began to try to look on the bright side. I know I have tested positive for a cancer mutation, but I have the power to overcome this disease should it ever contaminate my body, I am now being proactive rather than reactive. Knowing my risk is like– stealing your biggest rival’s play book the week before a big game. You can’t prevent them from running tough plays, but at least you know what to expect and how to react — you hold the key to winning, I hold the key to conquering this disease.
The more research I do on genetics, the more important I realize it is. Since I learned about my test result in April 2010, I have begun to take preventive measures against this disease. I am taking birth control. Many people do not know this, but by simply taking the birth control pill, you are decreasing your chances of ovarian cancer by nearly half. It does on the other hand however, increase my chances of breast cancer by 10%, but breast cancer is also easier to detect, treat, and beat in comparison to ovarian cancer (and considering I am being closely monitored, I feel comfortable taking the risk). I have also undergone a few experimental tests with doctors who are looking at different aspects of the BRCA-1 mutation. This is just my way of striking back at the disease that stole my mother from me as well as being a role model for my brother Ben (18) and sister, Bailey (14). Testing positive for a genetic mutation is not something to be scared of, it’s something to be grateful for, because once you know, you hold the key to survival.
These blogs were written by various members of the CHI Health care teams.
Brandi, How can you say that you have the power to overcome the disease? Do you have a cure for breast cancer? How can knowing that you have a risk factor hold the key to conquering it? Also, it doesn't make any sense that you would then say you take birth control - a known risk factor for developing breast cancer. If you are truly worried about developing ovarian cancer, then remove your ovaries! If you are going to live your life full of worry and deliberately take steps that can cause breast cancer, one would have to question how you can overcome and conquer it. Think about it - how would your life had been any different if you hadn't had genetic testing? Chances are that a woman in her 20's would be taking birth control anyway - and you wouldn't have the constant worry and be funding Dr. Grange's bank account.
I'm sorry for your mother's breast cancer, but if breast cancer had never run in your family, why was she tested for BRCA? This is an expensive test and there are so many other possible causes for breast cancer.
Brandi, Thank you so much for sharing your story with us. My aunt went through radiation, chemo and a double mastectomy for breast cancer in 2007. Today she remains cancer free, but this hit home for me as I know have a familial risk for cancer. I had heard about the genetic predisposition, but not the specifics. I am so sorry for the loss of your mother at such a young age. I hope that your story informs many more women of the ability to test for the genetic mutation.
Thanks for sharing your story. My mother was diagnosed with breast cancer in March of this year and things were never the same since that time. We caught it early and my mother completed treatment of radiation successfully. I watched my mother, the strongest person I know, be even more strong, set an even bigger example and show me that with faith and family, we can get through anything together. She tested negative for the BRCA1 test, as breast cancer had never run in our family and she was the youngest of 5 sisters. Cancer is evil, but there is a lot of things that cancer did do for us: brought us closer, strengthened our faith, made us appreciate life and each other each and everyday. I love my mom so much, she is my hero. My heart goes out to you, keep your mother in your heart everyday, she is watching over you. :)xoooooooooooooooooooox.