By: Alexa Shabinsky By: Alexa Shabinsky | October 1, 2021 | People
For Haleigh Youtie, her life halted 6-months ago when she lost her mother, Eileen after an 8-year battle with breast cancer. Over her 8 year-long fight Eileen made it her mission to get all Ashkenazi Jews tested for a Breast Cancer Gene mutation, as she had the BRCA1 gene mutation herself. According to statistics, 1 in 40 Ashkenazi Jews carries a mutation of a BRCA gene, most without knowing.
Haleigh & Eileen Youtie
Haleigh explained, “Due to my mother’s hounding and unrelenting efforts, many people who tested positive for BRCA1 or BRCA2 mutations caught it before developing cancer and were able to prevent it, and those who had already developed cancer were able to take immediate, life-saving action.”
Eileen got involved with Yodeah, an organization whose mission is to educate, inspire individuals to get tested and work to change medical guidelines. Yodeah’s work each and every day is helping save the lives of many in our community and beyond. We sat down with Haleigh to learn all about Yodeah’s important work and how she is on a mission to carry on her mother’s amazing legacy.
Haleigh said her mom used to nag her about everything in her life but she wholeheartedly stated, "Every Jewish mother nags, turns out nagging saves lives.”
Tell us about your work with Yodeah and why it is so important.
My mom introduced me to Yodeah three years ago. She was a tireless board member and I’ve done my best to pick up her incredible mantel with them as a newly minted board member. I have run multiple social media campaigns through their amazing organization, urging and imploring my network of family and friends to get educated and tested for this potentially lethal gene. I’m essentially a part-time influencer for Ashkenazi Jews and BRCA gene mutation testing (chic!). But seriously, what I love about Yodeah is their persistent commitment to education about heredity cancers and genetic mutations, specifically within the Jewish community. Yodeah isn’t just a faceless, unknowable organization – we are a small and mighty team of women from South Florida who know firsthand how harrowing – but preventable – cancer, and specifically those derived from BRCA gene mutations are. Yodeah’s work, through educational events, fundraising, facilitating of cost-effective testing, and much more truly saves lives. I plan to focus my efforts on Millennials and Gen Zers by stressing the importance of getting tested at a young age, sharing the information through more social media campaigns, younger-skewing events, and exciting partnerships. Who knows, maybe I’ll even make some TikToks! My ultimate goal is to get anyone and everyone tested who could be susceptible to hereditary cancers.
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Many people may not know about the BRCA gene testing. Can you give us the important facts and why young people should get tested?
I’m going to be honest there’s no fun way to disseminate this information. I hope it serves as a reality check, so here it goes. 1 in 40 Ashkenazi Jews carries a BRCA gene mutation (BRCA1 or BRCA2). If you are female and have the gene you have up to a 70% chance of developing breast cancer and up to a 50% chance of developing ovarian cancer. If you are male and have the gene you have up to a 30% chance of developing prostate cancer. Most importantly, no matter your gender you have a 50% chance of passing the mutation on to your children, starting the vicious cycle all over again. Let’s stop the cycle people!
I personally got tested at age 23, in equal parts due to my personal connection to cancer and at the behest of my mom. Her persistence stemmed from her wanting to be there to help me on this journey, no matter my results. I know it’s a scary prospect, and waiting is often the worst part. But it is so worth seeking out this information, as it can literally save your life and your family’s. It’s recommended to get tested at age 25, or if you have a relative that has cancer, you should get tested 10 years prior to the age they were when diagnosed (whichever comes first). Getting tested early and monitoring yourself is so immensely important for your own health and for the health of your family for generations to come. As all Jews know the prospect of grandchildren is VERY important, so save yourself some more nagging and get tested for the sake of your parents, your future children, and for yourself.
Getting tested for the BRCA gene is so easy, even a caveman could do it! You can reach out to your gynecologist or primary care doctor to do genetic testing, but you need to specifically ask for BRCA testing as it is not on the standard Sema 4. You can also follow the below easy steps.
What happens if you are positive for the gene? What steps can you take to be proactive?
If you carry a genetic mutation on a BRCA gene have no fear, there are several well-established steps you can take to decrease your risk of developing cancer. For breast cancer, women who carry a BRCA mutation can increase screenings, take specific medicines as a means of prevention, or opt for prophylactic surgery to substantially decrease the risk of developing breast cancer by over 90%. There is no screening to detect ovarian cancer at an early stage, but it is recommended to take birth control pills. To decrease the risk of developing ovarian cancer by over 90%, you need to opt for the surgical removal of the fallopian tubes and ovaries at a certain age. Men who carry a BRCA mutation should consider closer surveillance with prostate exams and PSAs. Some urologists also recommend the use of prostate MRIs to help find cancer at earlier stages. Prevention is key when it comes to cancer.
Another important thing to note if you have Ashkenazi Jewish heritage is that, not only are the risks of cancers caused by a BRCA mutation so much higher than the general population, these cancers also begin at much younger ages. So I’m going to be bossy for a second — stay vigilant, ask questions, prioritize your health, and encourage your family members to get tested. I know it’s not a fun conversation to have, but it’s so worth it. If doctors are willing to thirst trap on TikTok to answer invasive medical questions, you can broach this subject with your family — let’s all do our part!
What would you say to someone who is afraid to get tested?
Again, I know this is a daunting task. It sucks that we have to deal with genetic testing and the prospect of cancer at such a young age, but you know what sucks more? Ignorance! Ignorance is not bliss! I think people who are hesitant to get tested tend to fall into two buckets: those with no family history who see it as a burden, which is very common when it comes to BRCA and Ashkenazi Jews, and those who are afraid to test positive. Been there!
For those who don’t see a need I say, DO IT, do it for yourself and for your whole family who may not even know that they too could be affected by BRCA. Bless our parents but they are boomers and aren’t as in the know as they may like to think! My mom didn’t find out until she was 58 years old that she had the BRCA 1 gene mutation and at that point she already had breast cancer. If someone in our family knew to get tested earlier it could have saved her life and years of chemotherapy. A heavy truth that I hope awakens others to the life-saving, simple steps they can take. My mom is sadly not an enigma — over 50% of Ashkenazi Jews who carry a BRCA gene mutation have no family history of cancer. And just to reemphasize there was no known history of hereditary cancer in my family before my mom was diagnosed.
For those who are truly scared, I get it. But you simply must build a bridge and get over it. If you have even a sliver of Ashkenazi Jewish blood (lucky you, shoutout again to Ashkenazi Jews), you should be getting tested at around age 25! The three weeks in between taking the Color genetic test and finding out my negative results were extremely stressful but luckily, I had my mom by my side chatting my ear off about clearance sales and boys so I barely had any time to think about my impending results. I understand that at such a young age it’s terrifying and deeply uncomfortable to have to think about family planning, a mastectomy, an oophorectomy, and make other difficult decisions, but in the end, you are saving your own life and years of suffering for you and your family. Don’t wait until it’s too late. Please get tested early. Get tested now!
What is the biggest misconception about BRCA?
That BRCA gene, she’s tricky. She is great on her own, but once you throw a mutation into the mix that is when things get dicey. The biggest misconception about BRCA is that it only affects women. BRCA gene mutations occur in Ashkenazi Jewish men just as likely as they occur in women, which again is 1 in 40. Women do bear the brunt of the burden as they are more likely to actually develop cancer, but men carrying the gene still put themselves and their children at risk.
Both men and women need to get tested full stop, especially parents. Both parents no matter their gender have the same likelihood of passing down BRCA to their children, which is a 50 percent chance. Men who test positive for BRCA also have up to a 30 percent chance of developing prostate cancer. So men, stop relying on women to do it all and get tested too!
What message do you want to spread in honor of your mom / what legacy do you want to leave?
My mom, Eileen Youtie, tirelessly spoke up, remained curious, and encouraged others with a smile when it came to matters of health and getting tested. Despite the serious and often heartbreaking nature of her condition, she always had the brightest, happiest spirit. Channeling her levity and a sense of humor about life is so important — even if it doesn’t make the experience of educating yourself on illness and getting tested fun, it makes everything a little easier to swallow. It makes it easier to get through another day. Also, she could walk circles around anyone. Laura Wasser doesn’t hold a candle to my mother’s ability to get what she wanted. Take a page out of her book and relentlessly nag your loved ones when it comes to their health. They may be annoyed but they’ll still be alive thanks to you!
But perhaps most importantly, my mom led with love. She had a remarkable ability to call people in instead of calling them out — her positivity and selflessness (and generally being the best person ever) made her infinitely approachable. I advocate to practice her positivity and selflessness, and think it’s especially important at my age to stretch in a magnanimous direction like she did all her life. Even after being diagnosed and going through years of harsh chemotherapy she truly felt she was put on this Earth and diagnosed with cancer in order to help others. She ALWAYS put others before herself. The day she passed away when she was at her weakest, she still tried to muster all of her strength to get on the phone with a friend of a friend who was recently diagnosed with breast cancer. Even with death knocking at her door, she wanted to keep others as far away from it as possible.
My mom had a one-in-a-million zest for life, and I’m not exaggerating when I say she lived every day to its fullest. Be like Eileen, and don’t take a single moment for granted (or a single item of clothing at face value). But also, be proactive, get tested, and spread the word. Do it! I insist! (Yes I am nagging you through this article, just as my mom would have.) Please get tested for BRCA gene mutations and other hereditary cancers, so that you can live out the rest of your lives like my mom desperately wished she could have. Do it for yourself, do it for your family, do it for me, and most importantly do it for Eileen.
Photography by: Courtesy Haleigh Youtie