I used to be one of those people who always wore pink in October. I’ve run in multiple Race for the Cure 5Ks, and I’ve even walked 20 miles a day for three days straight at an event coincidentally called 3-Day Cure. I think these types of events give people a sense of purpose by allowing them to remember their loved ones, and they can provide comfort to some by being surrounded by those in similar situations.
My best friend and I at the end of a Race for Cure event
There was a time I thought I was doing enough when it came to raising awareness and money for cancer research, while also honoring my family history. However, 2012 was a rough time for my relationship with the pink ribbon. For one thing, a lot was going on that year politically concerning breast cancer. I also felt like I had outgrown just doing enough. After all, I wore the pink, ran the all the races and walked for three straight days but my mom still died. Again, I am not saying those type of activities aren’t important, but at that point in my life I felt like I needed something more.
I decided to search for organizations that were more focused on education and not just another event, one not so focused on awareness. After a whole lot of research, I came across the National Breast Cancer Coalition (NBCC). This is exactly what I had been looking for. This organization works with people from all different organizations, focused on breast cancer research, to work together toward a common goal. They call this goal Deadline 2020, which aims to eradicate breast cancer by January 2020.
I went to my first conference in May 2012, and I was blown away. It was amazing to be surrounded by men and women who have dedicated their lives to finding a cure for breast cancer. I was inspired by everything I learned, so much so that I applied to NBCC’s program called “Project LEAD Institute”. The institute was a 5 day intensive scientific training program focused on everything breast cancer. We were in class for 8 hours a day, participating in lectures, discussions and assignments with the best researchers and medical professionals from around the globe. I realized then, the only way to help people in my state wasn’t to organize another race, but to provide education.
What was also amazing is that through these conferences and programs I now had a vast network of women with experience and knowledge. I started by contacting all of them and telling my story: I am 30 years old, BRCA positive, never been diagnosed with cancer, but my mom was first diagnosed at 36. I wanted to hear from them, I wanted to hear what they would do in my situation. I learned in graduate school to interview a lot of people and see how answers overlapped in order to piece together a consensus. So that’s what I did. Ultimately, I knew what needed to be done, but I needed to figure out how time sensitive it was and it what order it needed to happen (i.e. could surgery wait until after kids or did I need to do it now?).
So as I did my research and reached out to people in my network, here are a few tips that really helped me out along the way:
Educate yourself. Don’t be afraid to go to conferences, meet people, research organizations that support what you are interested in. Breast cancer is a complicated disease with many variables. Understanding the disease as a whole really helped me get a solid foundation while reading and doing research. Knowing the basics and what questions to ask also gives you more confidence when talking to medical professionals.
Talk to people. Persistence is important because it often takes time to get a hold of the right person. Don’t get deterred or give up. Talk to people who have already been through a similar situation, talk to a genetics counselor, talk to oncologists. I think this will help you start putting some the pieces together. The more information you have the easier it will be to make these very difficult decisions. If you are like me, you may know what needs to be done and it’s just a matter of learning about the different options and determining the best path for treatment.
Get in the habit of keeping good records. E-mails, business cards and medical information are so important. If you have a family member who has been diagnosed in the past, make sure you can obtain their medical records. If they have completed a genetic test, try your best to get an official copy (this means the actual genetic report from the lab that ran the test which lists out exactly what was found). Every doctor receives a copy they can give you (more on this later). Start collecting records for yourself, all your mammograms, MRIs and ultrasound reports. Keep a digital and hard copy. All of these things will be important later as you and your doctors determine the best course for treatment, so the sooner you can start collecting the information the better.
The thing that stands out the most to me from all of the conferences and all the conversations is the importance of being proactive vs. reactive to my situation. I need to remember that I am very lucky to be in this position. I have the opportunity to make decisions about my health prior to being diagnosed with cancer rather than after the fact. Because my mother was so young when she was first diagnosed, and cancer tends to appear earlier in the next generation, I have decided to have the surgery now to dramatically decrease my chances of developing cancer. This means I am having a double mastectomy.
More on that to come.
