I know that it probably comes as a shock to most of you that I am not Angelina Jolie, but I do have something in common with her. I carry a BRCA gene mutation that significantly increases my risk of breast and ovarian cancer.
There has been a lot written about how brave Angelina is to not only go public but also take radical action based on the statistically significant “maybe” that she would get cancer. I agree that she has bravely opened the door into her life in a very personal and poignant way to help educate women worldwide through increased awareness of the BRCA gene mutation. I’m also here to tell you that I think she made her choice because she loves life and has a willingness to do whatever it takes to not only survive, but to thrive.
Would you be willing to have surgery if you knew that it would dramatically increase your chances of a long and happy life with the people who you love, doing work that matters and making a difference? I would.
I’m a little embarrassed to write that took me a few years to get tested once I knew I could have the BRCA mutation and I put it off because of fear. Finally, I went to the genetic counselor, swished some mouthwash in my mouth and had the results just a few days later. Despite the fact that my results were positive, the fear disappeared, and my desire to be proactive kicked in immediately.
When faced with a decision to have surgery (no, I did not opt for a mastectomy) and be able to increase my chances of one day holding my grandchildren, it was a no brainer decision. I tested positive for the gene and two weeks later had my ovaries removed in a procedure called a prophylactic oophorectomy. I did not sit paralyzed by the worry that surgical menopause would be so awful that it was worth living with an enormous risk of breast or ovarian cancer.
Are you at risk and waiting to get tested because you don’t want bad news? You’re afraid of what you’ll find out? Getting tested and having regular screening does not give you cancer; it puts you in the driver’s seat instead of the backseat. Knowing is not a death sentence, it’s saying yes to life!
According to Cancer.gov:
According to estimates of lifetime risk, about 12.0 percent of women (120 out of 1,000) in the general population will develop breast cancer sometime during their lives compared with about 60 percent of women (600 out of 1,000) who have inherited a harmful mutation in BRCA1 or BRCA2.
While the risk is high, the Susan G Komen Foundation reminds us:
Having a BRCA1 or BRCA2 mutation does not mean you are going to get breast cancer. Some people with a mutation will never get breast cancer. And, people without a mutation are still at risk (most women who develop breast cancer do not have a BRCA mutation)
You may be wondering if you should get tested for the BRCA mutation given all of the recent publicity about Angelina Jolie, Christina Applegate, Sharon Osbourne and other celebrities. Not everyone shares the same level of risk and not everyone needs to be tested. Here is a great summary of who should be tested and if you see yourself in high-risk population, empower yourself to take action.
Here’s what I learned and am still learning…
- I am at risk for breast cancer and ovarian cancer (so are you)
- I am a leader in my own life and I always have a choice (you do too)
- I made the choice that is right for me (but may not be right for you)
- I choose to be positive while also understanding reality. A positive realist! (you can too)
- I need to live a healthy life to have a long and happy life (so do you)
- I can pour countless hours into reading message boards assuming that someone else’s decision or someone else’s experience will mirror my own (it will not)
- I choose to live a life of purpose filled with connection, relationships and work that matters (you choose too)
Fear can feel debilitating if we let it. Still, here’s what humans have shown us generation after generation to be true: Each of us has reserves of courage that flow deeper than we ever imagined, we just need to look within to find the path to the source. It’s also true for you.
You are not alone! Resources:
FORCE (Facing Our Risk of Cancer Empowered)
PSI (Link to MRI Financial Assistance Program for Young Women)
BRCA Umbrella (Bringing together those dealing with a BRCA or other gene mutation)
Susan G. Komen (Link to information on testing and risk with the BRCA1 or BRCA2 mutation)
What about you? When have you let fear hold you back from proactive? What happened once you got over the hump of worry and into action?
Alli, Thanks for writing this as it is such an important life story to tell. Today, we have the opportunity to know so much more about our health but the key is we need to do something with the information. It is in our choices and actions we can make a difference in the health of our life. Thanks for bringing this message forward. I know it will inspire many others! Jon
Jon, You’re right – today we can know more about our health than ever before and while that may be scary, it’s also empowering. Thanks for sharing your thoughts and this post. Knowledge can be overwhelming when you’re in it alone.
Alli, first of all Hats Off my friend and a big salute to you for the courage you have shown and the choice you made in your own life to be a leader.
Secondly I admire your courage for sharing.
I have no words to appreciate the post. I was moved, inspired and I admire and appreciate you.
Lalita, Your words mean so much! I wrote this post with the hope that women that cannot relate to someone like Angelina Jolie can relate to me and know that we all are empowered to make choices and knowledge is power. I’m still living with vigilance – lots of monitoring annually but when it’s the first thought I have when I wake up and the last when I go to bed I’m not living the life that I want to have.
I tremendously appreciate you, Lalita!
So proud of your brave decision! I bet the support of family members helped motivate you to get tested as well. No doubt, they would like to have you around and healthy for a long time!
Many thanks, Jessie! I’m very blessed to have a family that supports me and also let me make my own choices instead of imposing “here’s what I think you need to do.” I had a lot to sort out but ultimately I’m the one that needed to own my decisions. I have an AMAZING extended family that made my decision much easier to make as I want another billion years with all of them. Thanks for your heartfelt comment, Jessie!
Wow Alli !
I’m really struck by your vulnerability. You never cease to amaze me with how open and collaborative you are with all us sharing your personal expériences.
Each time you leave a lasting inprint and make us think and reflect. You elevate our consciousness.
You are a leader, a unique moment in human history. Living life and setting an example for all of us to follow.
I am VERY grateful to know you and appreciate connecting with you everyday.
Namasté my friend,
Johann
Johann, We all have stories from our lives that when we share them, it shows that we’re human and builds connection beyond our smart and savvy answers to life’s questions. You do this so well on your own blog integrated with living and leading with heart and transparency. I’m incredibly grateful to know you and sincerely appreciate all of your support!
Alli, thank you for writing an incredibly important post. Almost 4 years ago to the day, the doctor found a golf ball sized tumor inside my body and a diagnosis of stage 3 cancer (not breast or ovarian cancer) with a 40% chance of survival. I had surgeries & 6 months of chemo. For the past 3 years, 3 months and 3 days, I’ve been NED (No Evidence of Disease). The fear comes in the not knowing, as you say. When you know, you can be empowered to address it and fight. There are many debilitating and life threatening diseases out there. When you can take a test to find out you’re at risk, I stand with Alli and encourage you to take the test. Knowledge is power.
Joy – Thank you for sharing your story here! I’m with you, knowledge IS power.
Three years, three months, three days… I can only imagine the resilience that you have and am touched and inspired that you show the world what it’s like to not live in worry but in celebration of life. NED is a term that’s new to me but I hope it’s one that you get to hear for the rest of your life (and mine too).
Not knowing sucks, as does the worry that I’m OK now but what about tomorrow, next month or next year. I believe that I can’t control what will happen in the future but can embrace all that I can do today to have as long and healthy of a future as possible.
Many thanks, Joy!
What an amazing and informative post, Alli! You succinctly captured a dilemma that many women face daily and choose not to do anything about it because of fear. You have opened up a dialogue that so many women want to have but are not comfortable having. Bravo to you for sharing this most private part of your life and doing it with respect and love. You are a leader beyond measure!
Thank you, Terri! You’re right. We are not only incredibly afraid to talk about cancer as if whispering the word could give it to us but also not talking enough about the proactive decisions we can make and information that is available to us. I still have many moments when I wonder if this time is the time something will show up on one of my scans. Still, I can’t live with a dark cloud over my head – I much prefer playing in the sunshine. Suffering in silence doesn’t help anyone. Thanks for being a part of this important conversation!
Wow, Alli. What a brave and inspiring share. Thanks for giving me more strength to deal with all the unknowns that life hands us, and to remember courage in the face of the truth that bad things happen.
Bad things do happen but we can still make it through. You inspire me, Blair! Living big with courage is far more powerful and meaningful than playing it small with fear as our guide. Thanks so much for sharing your wisdom here.
Alli, thank you for allowing us to capture this glimpse into your world. I’m happy to see you adding your voice to raise awareness on such a fearful topic for many. Your words are infused with the voice of empowerment, resourcefulness, and courage. I’m honored to know you.
Thank you, Samantha! While celebrities certainly raise the profile of this discussion, it’s every day women that are equally important not only in the dialog but also in their personal leadership and strength. I’ve found out I have the gene mutation and can now make proactive choices. Many women discover that they too have the mutation only after they have already faced at battle with cancer. I hope that this post will reach even one man or woman that was holding themselves back from testing and can now make the leap to be in the drivers seat.
By the way, your transparency, honesty, integrity and vulnerability inspired me to write this post (finally). Thank YOU for showing me what strength can come from vulnerability.
Alli. I am SO proud of you.
I will be tested at my next lap work.
Be a Leader, right?
Amber-Lee, you are a leader, my friend! Your words mean so much and if you’re in the higher risk group to qualify for testing I’m so glad that you’re going to take those steps too. Please know, that even while you wait for your results, you are not alone!!
Funny thing, I am not Angelina Jolie either. Was tested for BRCA mutation earlier this year and I do have one. Have already had cancer as a relatively young woman. Had lost my mom when she was 46. I’ve lived a very healthy lifestyle, but the gene that tells the cells to clean up isn’t there. Knew there had to be some real-life basis for not being a good housekeeper.
Throughout the cancer treatment—several surgeries and chemo—I came to know God more deeply. He kept showing up and showing me one mercy after another. He also gave peace and courage in liberal doses. Having come through cancer, I don’t fear it. I do know that my risks are extremely high for recurrence. I’m only 50 and it just makes sense to choose surgery. (And I did make the choice before Angelina’s op-ed appeared.) Many other women have shared their stories with me—that helped. My decision has more to do with my husband and daughter and extended family. If I could easily reduce the chances they’d have to be on the other end of cancer treatment, it made it an easy decision. I already lost my mom way too early. Her cancer journey was brutal and 46 is way too young to leave your family.
But fear—you’d be surprised at the little things that open up the door on it. *blush* Sometimes daily life can be a little like the fear factor. Nobody brings meals, sends cards, stops to listen and pray in the grocery store aisle for people just dealing with everyday life. I do cultivate good relationships where I can help others face fear and they encourage me, too. I’ve found “God’s got it” as my friend’s husband would say. I lean into strong words like Ephesians 4:6&7—and see anxiety melt into steady prevailing peace. I agree with you that are made to be courageous. Cultivating relationships and facing fears head-on build into our lives a resilience that help us face the next fear and the next.
Mari – Thank you for stopping here and sharing your experience and lessons. God’s got it! We ARE made to be courageous and you’re living proof.
My children and extended family were huge drivers in my own decision. I’m fortunate because I was tested before getting a cancer diagnosis and could take action to reduce my risk. You’ve come through the fire and I appreciate that you echo that none of us has to go it alone! The stories like yours remind me that while it’s our own individual experience, it’s also shared by so many others and it’s the connection that creates meaning and helps us (me!:))to keep moving forward with both courage and compassion.
Daily life can be like fear factor… wow. Really resonates with me too. The more we open up our hearts and experiences to others, the richer life becomes because we have each other. Thank you for making a big impression on me and teaching me much with your story.
You are a courageous woman.
You not only have shared a deeply private but profound part of yourself, but you have given the rest of us room to be human.
Everyday many of us are faced with making decisions, decisions that will alter our lives.
You have so eloquently shown us how to be a courageous person in the eye of the storm. Face the storm even when you are scared.
I admired you greatly yesterday, I admire you even more today.
Lolly
Lead From Within
I’m so touched by your comment, Lolly.
So many people struggle with fear with their health, at work, in relationships etc – fear wins too often. It’s amazing how we can find our courage when we tap into why it truly matters. I will never forget looking at my children’s faces when they asked me why I had to have surgery I told them because I want to do whatever it takes to be with them for a long, long, long time to come. I still battle my “what ifs” and “could be’s” but i’m getting better at focusing on what’s here right now. Each of my children have a 50% risk of inheriting the gene mutation from me and one thing that I hope will be true is that men and women 10, 15, 20 years from now will have options beyond what we have today to enable them to look fear in the eye and make their own proactive, empowered choices too.
Many thanks, Lolly!
Alli – I am so deeply touched by this. Your willingness to share touches us all on a soul level. I think you have so beautifully made it clear that fear is the factor that we must all step through. No matter what we face, it’s always worse when we allow fear to freeze us. None of us can possibly know all the opportunities that lie on the other side of that fear until we step forward and step through it.
Thank you deeply for opening your heart to share. I have a close friend whose daughter was just diagnosed with Lynch Syndrome. Her chances of cancer is 95%. It has been horrifying to her family but she just told me yesterday that once they faced the fear and started the many test she must go through an inner strength has appeared in all of them and she is so grateful. Something she could have never foreseen.
I am so grateful to know you Alli – I’m learning from you daily!
Much love,
Karen
Karen, Thank you very much! Your comment really means a lot to me. I think that by sharing stories like my own it shows people that they are not alone despite the fact that when they’re struggling against fear it feels that way.
Given my test results I was able to tap into courage and strength. I can only imagine the fight I would feel coursing through my body if I ever found out that my daughter was facing such a high risk. Your friend’s daughter probably feels the intense energy and fierce love of her family and together they are moving forward.
I am so happy and touched that we’ve connected and I too learn from you!!
xoxo
Alli, jumping in a little late here, but want to thank you for this great piece. I really appreciate how informative it is and how honest you were about your process, i.e., from procrastinating due to fear to finally taking action. The surgery you opted for isn’t a little decision, and I applaud you for your courage! Angelina Jolie may have more attention because she’s a celebrity, but you are no less commendable for what you’ve done here by writing this piece. Thank you!
Alice, Never too late 🙂 Thanks, Alice. It was important for me to realize that fear can paralyze but knowledge is power. It’s the unknown that I feared the most. Appreciate your kind words and support!