Last month I received the news that I tested positive for the BRCA1 gene mutation, which means I need to rethink a lot of my lifestyle choices, among many things, the types of foods I eat and beauty products I use. For those unfamiliar with BRCA1 mutation, it’s a genetically inherited mutation that roughly 1 in 1000 people have that increases their likelihood of developing various types of cancer, such as breast, ovarian and pancreatic cancer, by as much as 7 times. Essentially the mutation disables the body’s ability to repair DNA and fight off bad cancer cells, significantly increasing the risk of getting cancer. Because of this, the chance of me getting breast cancer in my lifetime is nearly 85 percent, compared to 12 percent of those without the mutation.
This is a very personal and scary topic, but in the spirit of female empowerment and community (I attended the Women’s March last weekend, after all!), I decided to share my results because I’m hopeful my journey will encourage people with and without the mutation to live healthier lives and make positive lifestyle changes. There are so many women living under the dark shadow of cancer and the BRCA1 mutation, anything I can do to make them feel more in control of a situation that often leaves them feeling powerless, is worth putting myself out there for.
The journey for a lot of women with the mutation means choosing whether or not to have a preventive procedures to remove their ovaries, fallopian tubes and breasts. Partial removal of the ovaries and fallopian tubes was the path my mom chose when she received the news of her positive BRCA1 test, and although she ultimately lost her battle to pancreatic cancer (after having won her battle to breast cancer) at the age of 59, she had to practically beg to get tested. She had no information on her family’s medical history, and doctors are hesitant to test people with no history of early onset cancers in their family, or who do not have an Ashkenazi Jewish background. I’m not sure why doctors are so reluctant, but my guess is that the medical industry makes more money off of reactive treatments like chemotherapy than they do preventive treatments.
We suspect it’s my mom’s paternal side of the family that carries the gene mutation, but we won’t know for sure unless more people on both the paternal and fraternal side of my family get tested. Genetics are always a gamble, and in the case of the BRCA1 mutation, there is a 50/50 chance that a parent with the mutation will pass it along to their child. My younger sister tested negative for the mutation, while I tested positive. A simple game of heads or tails, and I lost.
I’m 31, so I’m not quite at the age where it’s crucial to decide if a preventive procedure is right for me. It’s recommended that women with the mutation undergo any preventive procedures by age 35-40, with some medical organizations suggesting that it become a universal standard for women with the mutation to remove their ovaries and fallopian tubes by the age of 35. One case study is Angelina Jolie, who by 39, made the decision to remove her ovaries, fallopian tubes and breasts after she tested positive for BRCA1 mutation. Read the op-ed about her decision in the New York Times here.
I will continue to explore these options with help of my doctors, but in the meantime I need to make other important decisions, such as whether or not to have kids and risk passing the mutation along to them. I’ve never had baby fever or the urge to be a mom, but I’m scared if I don’t have kids that I’ll have no family when I get old (who is going take care of me? Is that the wrong reason to have kids?). Now I need to not only decide to have kids, but also have them, within the next 3 years in case I choose to have a preventive procedure. I am angry because I don’t get to make this important decision in my own time, and feel like I’m rushing against the clock.
Other decisions are far simpler, such as deciding which gym to join or what types of foods to eat. Second to genetics, most cancers are caused by lifestyle choices, which means everyday decisions can greatly affect the chances of not getting cancer. For high-risk individuals like myself, this means eating clean whenever I can, not smoking (a huge contributor to pancreatic cancer), avoiding second-hand smoke, using natural beauty products, working out, and most importantly, getting screened and tested regularly.
A Fighting Chance
As my doctor said, knowing you have the mutation puts the ball in your court. If you know you have it, you can change your lifestyle and actively fight against it, and even call on preventive procedures if need be. If you don’t know, you may not discover you have cancer until it is too late and lose the opportunity to fight it early on.
If you are on the fence about getting tested because you are afraid of the outcome and its medical implications (I know many people for whom this is true), or if this is the first time you are learning about the BRCA1 mutation, remember that you lose absolutely nothing from getting tested. The first step is talking to your family and seeing if early onset cancers are prevalent in your lineage or if you come from Ashkenazi Jewish descent, and if so, you should probably consider getting tested. The cost is only $200 if you pay Ambry Genetics out-of-pocket directly instead of going through insurance, which can be over $2000 (another way the medical industry prevents people from considering preventive procedures).
One positive outcome that came from my mom’s cancer battle is that her persistence to get tested, despite having little to no family history to warrant the test, gave me the information I needed to get tested myself. Without her perseverance, I would have unknowingly been living with the mutation. She gave me the opportunity to put my life and odds of getting cancer into my own hands, an invaluable gift that I’m so thankful for.
Bet you didn’t know you were signing up for cancer public service announcement when you started reading this blog post! Anyways, I’m excited to share my journey with you. Stay tuned for clean food recipes, workouts, natural beauty reviews and more. Of course, I’ll keep the outfit inspiration coming. 👓