While most young women were focused on first jobs, first apartments, friends, boyfriends and all of the other exciting things happening as you enter the real world, Lindsay Avner was making a groundbreaking decision that could ultimately save her life. At just 23, Lindsay became the youngest patient in the country to bravely opt for a risk-reducing double mastectomy with reconstruction. Lindsay had not been diagnosed with breast cancer, but based on her family history and genetic testing results she didn’t want to wait for the day when a diagnosis would come.
Today Lindsay is healthy, happy, and making a difference in thousands of lives with her organization Bright Pink. Bright Pink aims to provide resources to young women who, like her, haven’t been diagnosed with breast cancer, but have the power to be proactive to prevent this disease or detect it early, at a non life-threatening stage. We recently caught up with Lindsay to hear all about her journey, her mission, and what young women everywhere should be doing to take their health into their own hands…
What was the process of preparing yourself for genetic testing, and then for the results, like? Any advice to those considering it?
I watched my mother fight breast and ovarian cancer when I was 12, and lost both my grandmother and great-grandmother to breast cancer before I was born. I knew that my family history was something that followed me, so my decision to undergo genetic testing was the next step in determining exactly how high my risk for breast and ovarian cancer was. At the time I was devastated and terrified to find out that I tested positive for a mutation on the BRCA1 gene, which greatly increased my risk of developing both cancers, but it empowered me to take the necessary actions to control my breast and ovarian health.
Genetic testing can be intimidating, but it does not make you a victim. Instead, it can aid you in making bold choices to be proactive with your health.
You were only 23 when you decided to undergo a risk-reducing double mastectomy, how difficult was that decision and what considerations went into it?
I was healthy and without cancer, but my family’s strong cancer history and BRCA1 genetic mutation made my risk for developing these cancers so extreme that I knew I needed to make this decision in order to prevent the same disease that impacted three generations of women in my family from striking me. I didn’t want to wait to detect cancer, I wanted to do everything I could to reduce my risk of ever developing breast cancer. So then, a couple of scars, didn’t feel so bad.
How did you stay so strong through your mastectomy? What advice do you have for women facing the same procedure, preemptively or otherwise?
It’s about looking at the bright side. While this surgery was viewed as unthinkable to many, I found comfort in knowing that, at 23, I could say that I had taken my breast health into my own hands. I found strength in knowing that I would be the first woman in my family whose kids will not have to watch their mother be diagnosed with breast cancer. I know firsthand that women who are considering this surgery will have anxiety and frustration, but I really believe that having the peace of mind that comes along with taking control of your breast health is invaluable.
What habits should young woman be forming to both reduce their risk of breast cancer and aid in early detection?
There is always something that young women can do to be proactive with their breast and ovarian health. First, you need to know your family history as that affects your personal risk. Having just one 1st degree relative with breast cancer doubles your personal risk for the disease. So collect that health history, from both mom and dad’s sides of the family, and then complete Bright Pink’s Assess Your Risk tool at AssessYourRisk.org for a personalized risk assessment. You can print the results and take them to your next doctor’s appointment to guide a proactive health management discussion with a doctor you trust.
Additionally, we know that the health habits young women form in their 20s and 30s will last a lifetime. There are many lifestyle adjustments that can reduce your breast cancer risk. Maintaining a health body weight, limiting fat intake, exercising at least 30 minutes most days, Limiting alcohol intake, breastfeed, and not smoking can all reduce breast cancer risk.
In terms of early detection, one of the easiest and most important things you can do for your breast health is to be breast self-aware, which means knowing your body, knowing your normal, and knowing how breast cancer presents itself so that if something abnormal for you persists or worsens for 2-3 weeks you can bring it to the attention of your doctor. Refer to our Breast Self Awareness card to learn the signs and symptoms of breast cancer and tips to get to know your normal. Additionally, every young woman should sign up Bright Pink’s Breast Health Reminders, monthly text message reminders to be breast-self aware, by texting PINK to 59227. This simply tool can be lifesaving.
Finally, every woman should be seeing a doctor they trust once a year, even when they feel perfectly healthy, for an annual well-woman’s exam. You can use Bright Pink’s 5 Questions Every Young Woman Should Ask Her Doctor to guide a quality conversation with this key partner in being proactive with your health.
Tell us about the birth of Bright Pink?
Throughout my experience with genetic testing and my decision to undergo surgery, I was extremely frustrated by the lack of resources for women like me, who hadn’t been diagnosed, but had the power to be proactive to prevent these diseases or detect them early, at a non life-threatening stage. So I started by creating a website, and it’s now blossomed into an incredible organization that fills the void that previously existed in the breast/ovarian health landscape.
What does your average day with the organization look like?
The best part is there really is no average. I try to divide my days between being more internally focused, working with the team, iterating on our programs, strategizing for the future, or external-focused meeting with donors, partners, sponsors and bringing all of our work to life. It usually doesn’t fit as cleanly into those categories as I’d like, but that is part of the fun of it all!
What has been the greatest challenge and the greatest reward of running the organization?
The greatest challenge is that every day, we are encountering new situations and problems we haven’t yet faced. I am a big believer in the need for leaders to be decisive, to thoughtfully choose a course of action and if we fail, to fail fast and move forward. Hands down, the greatest reward is hearing from women on a regular basis who say, “thank you, Bright Pink, you saved my life.” It never gets old!
How can people get involved with Bright Pink, both in the Chicago area and elsewhere?
Start talking to us! Follow and engage with us on Twitter and Instagram at @BeBrightPink and like Bright Pink on Facebook. Also, we would encourage you to complete the Assess Your Risk tool at AssessYourRisk.org, which combines family health history with lifestyle factors to provide insight into personal risk level. And sign up for Breast Health Reminders, text messages to remember to be breast self aware by texting PINK to 59227. Don’t forget to text “y” for yes after the prompt to be fully entered in.
How can individuals make the most of October as Breast Cancer awareness month? Are there any products, events, organizations outside of Bright Pink you find especially inspirational and important to the cause?
It’s so important to use the month of October to as a catalyst for action. I would encourage women to think of one change they can make to “brighten up” when it comes to their breast and ovarian health. Do you need a refresh on the symptoms of breast/ovarian cancer? Have you been putting off your yearly well woman exam? How can you make a commitment to adopt one health risk reducing behavior into your lifestyle? Additionally, there are so many incredible sponsors who support Bright Pink in the Fall and year-round. Some highlights:
- Aerie Show Your Support 2014 campaign where 100% of proceeds from the Bright Pink Charley benefit Bright Pink
- Paul Mitchell Pink Out Loud campaign with incredible, limited edition products on sale nationwide.
- Bid on or donate through the EBay Natalie Gulbis Auction to golf with LPGA pro Gulbis and enjoy a Vegas getaway
Where do you see yourself and Bright Pink in 5 years?
Five years from now, I hope Bright Pink is thriving! I hope we are having a meaningful impact on millions of women’s lives. I hope we are the preeminent young women’s health organization in the country consistently innovating upon our suite of world-class education and support programs and inspiring women to move from awareness into action. And I hope we are continuing to have as much fun as we already are.
[Photos Courtesy of Bright Pink]