Navigating Genetic Testing and Family Risk

April 10, 2015

Lise Marlowe blogs about genetic and family breast cancer risk and navigating the genetic testing process. Live in the Philadelphia area? Learn more about hereditary breast and ovarian cancer risk during our April 26 community meeting.

award picture 2 (1)My cancer “journey” began last June on a gorgeous spring day after my daughter’s confirmation at Reform Congregation Keneseth Israel. I left my daughter’s confirmation service that morning filled with tears of joy and happiness; I didn’t realize that in a few hours, there would be different tears coming my way. That afternoon, I had a mammogram and breast ultrasound appointment. A few weeks earlier, I felt a small lump in the shower and wanted to make sure all was OK. As a busy mom, I honestly didn’t know the last time I had done a self-exam. I have since learned that most women find their breast cancer, not doctors. Early detection made my “journey” a little easier and according to my doctor, saved my life.

With dense breasts, the results of my mammogram turned out to be negative, but the ultrasound showed a mass in my right breast. A week later, the biopsy confirmed that I had stage I breast cancer. When I heard the words “cancer,” my whole world turned upside down. I was supposed to plan my son’s upcoming Bar Mitzvah, not have cancer. I called my rabbi and asked how to handle cancer and still be “mom.” She said “let your kids know that your job is to still take care of them, that doesn’t change with having cancer.”

The next day, I received a phone call from my primary doctor who was shocked to hear of my cancer diagnosis. He has known me since I was a teenager and knows I try my best to live a healthy lifestyle. I am a vegetarian, exercise every day and don’t smoke. After learning I had breast cancer, my doctor thought maybe I carried a BRCA gene and told me to get tested. If I was a carrier, my daughter, son, brother and nephew would have a risk of developing breast cancer, too. My heart sank hearing about this. I was already concerned about my family’s emotional health, and now I was worried about their physical health, too.

That night, I did what most cancer patients shouldn’t do: I went on the Internet. A popular breast cancer website said that Jewish women are at a higher risk for breast cancer. As I questioned if my religion was the source of my cancer diagnosis, I learned that 1 in 40 people of Jewish Ashkenazi ancestry carry a harmful mutation of the BRCA 1 or BRCA 2 genes. By contrast, 1 out of every 800 members of the general population carry the mutation. Members of the Jewish community who trace their roots to Central or Eastern Europe are known as Ashkenazi Jews. Over time, the genetic traits of these early Ashkenazi Jews have been passed down through generations, including a greater frequency of carrying certain changes in genes known as BRCA1 and BRCA2, which are associated with an increased risk of cancer.

As I navigated through the gene testing process, I reached out to many family members to put together a “family cancer tree.” I realized that this gene test may also benefit many distant cousins. I was unaware of how many of my family members survived or passed away from cancer. It was scary to see how much cancer was in my family tree and that I was the youngest one to be diagnosed.

The worst part of being a cancer patient for me was waiting for test results. There were many unanswered questions and hurdles that I had to go through. What kind of cancer do I have? Has the cancer spread? Do I have a BRCA gene mutation? What will my treatment be? It took 4 weeks to find out if I had a BRCA gene mutation. My test results came back negative. It was such a relief to know I wouldn’t need more surgery and that my family’s health was not at risk.

As a cancer survivor, I don’t know if my “journey” will ever come to an end. I live with the thought of cancer every day. From my experience, I didn’t have a lot of information about my Ashkenazi Jewish heritage risks before my diagnosis. Perhaps if I was more aware, I would have been more diligent in doing self-exams each month. I want to help other women learn about the hereditary breast and ovarian risks by hosting this free event on Sunday, April 26, at Reform Congregation Keneseth Israel. Many busy moms don’t put themselves first and check their health. I hope this event will help women think about their health, create awareness of the BRCA mutation, and perhaps save a life.

Lise Marlowe is mom and a sixth grade teacher at Elkins Park School in Cheltenham Township. She also teaches Holocaust education at Keneseth Israel. She was diagnosed with breast cancer 5 months ago. 

Understand more about hereditary breast and ovarian cancer. Join us for our Sunday, April 26 community meeting, Hereditary and Breast Cancer Risk – What You Need to Know.

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