So maybe you're reading my blog because by default, you have to. You're a friend, family member or random Facebook friend that keeps being inundated with The Molly Effect. BUT, for any of you that may have caught wind of my blog because you can relate, know someone who has battled breast cancer or are at high-risk yourself or know a friend or love one that is, this post is for you. Finding out, or deciding you would like to find out, if you're at high-risk for breast cancer can come to you in multiple ways. What I've found is the most common discovery is from young women whose mother, grandmother, aunt, etc. have had breast or ovarian cancer, and are looking at their family history with a bit of worry. While this is common, it's not the only way you can be faced with your high-risk history. For me, it was my dad getting sick, and specifically that they could not find out why or with what. There was a known family history of breast cancer in my family, but it wasn't openly discussed, or at least not when I was younger. But truth be told, once we mapped out the family tree, there were just too many instances of women on my dad's side of the family that had been faced with breast cancer.
Everyone's situation is unique, and I'm constantly reminding people that the choice is personal. Just because I saw the high-risk in my family and chose to dig deeper with genetic testing, doesn't mean that's right for everyone. And that is 100% OK. As much of a supporter I am for the decision I made, I would never recommend it to someone who wasn't absolutely sure yet.
But if you are sure, and you want to move forward with finding more information about your risk for breast cancer and/or the BRCA genetic mutation, one of the first steps you can take is to meet with a genetic counselor. I'll start by saying my experience was really, really great. I met with an awesome genetic counselor that did a wonderful job of explaining what was a completely unknown thing to me, in a way that made me feel as at ease as possible (when it really could have freaked me out even more).
So below is a list of three things I recommend to consider, think about or take with you to your first meeting with a genetic counselor. And if you're not there yet and just want to talk to someone over the phone, or read more about it online in the comfort of your home, I've included some links and contact info as well. It can be a scary thing to take this step, but I can personally say that knowledge is power, no matter what you do with it. Carpe diem, friends!
1. Your family tree Chances are, you do not have a family tree mapped out on a piece of paper at home listing all the members of your family and the ages that they have had cancer, or at least it's not something you refer to often. But here's the thing, that family history can be some serious ammo in your fight for being proactive with your health. Not only will the genetic counselor want to see this to gauge your risk, it's also a triggering point to begin the conversation with family members. Maybe breast cancer is taboo in your family and a subject rather not discussed. Asking your mom, dad, grandma, grandpa, whomever, to sit down with you and chart out the family members before you who have been diagnosed with cancers (not just breast) can lead to more open conversations about your individual risk and the disease itself. This can help if you decide to take more actionable steps later on.
2. Your personal medical history and ancestry If you personally have been diagnosed with breast, ovarian cancer or another form of cancer, this can help navigate your risk for carrying the BRCA gene, along with the knowledge of what, if any, of your relatives have been diagnosed as well. Aside from past cancer diagnoses, there is also a correlation between the genetic mutation and being of Ashkenazi Jewish ancestry. The genetic counselor will want to know this right away to help assess your risk.
3. A support system! This is totally my personal opinion, but I believe that having some type of support system with you during this process can immensely help overall. Whether that be a mom, dad, sibling, boyfriend/girlfriend or supportive friend, don't feel weird if you want to bring someone with you to the meeting. Sometimes it's hard to take in all the information you're given when you're feeling overwhelmed, and it can be nice to have someone else in the room taking notes or listening with a different perspective, while also being there as a support for you. And hey, if you can't think of anyone you'd be able to take, I volunteer to be your supporter. You can do this!
Bright Pink, http://www.brightpink.org/ Education resources, workshops, tools, high-risk networking
Genetic Testing in the Cincinnati Area:
Cincinnati Children's, http://www.cincinnatichildrens.org/service/h/human-genetics/resource-center/ St. Elizabeth, http://www.stelizabeth.com/cancercare/geneticmutationtesting.aspx
Disclaimer: I am obviously not a medical professional, so please, just take my words as suggestions, from personal experience. As always, there are professionals out there that will be a better medical resource, but if I can ever be of any help in your personal journey, I am here to help.