My name is Andrea Beilstein, and I am 48 years old. 24 years ago, I married the love of my life, Del. We have four awesome kids, Caleb 22, Tanner 20, Caden 17, and Kegan 15. I found out I had the PTEN mutation about 13 years ago, and I’ve learned a great deal about its potential influence on my health and my family’s health through the PTEN Hamartoma Tumor Syndrome (PHTS) Foundation. This knowledge helps us be more aware of how our past conditions and potential for future diagnoses are linked, enabling us to make better decisions about monitoring and preventative health care.
My mom was diagnosed with stage 4 breast cancer when she was 42 years old. She underwent a double mastectomy and followed up with 12 months of chemotherapy which put cancer in remission. At her 5-year mark she was cancer free, and at her 10-year mark, she was still cancer free!! But shortly after her 16th year in remission, she started having pain in her bones and was diagnosed with metastatic breast cancer in her bones. She was on and off chemo for about another two years and was hospitalized for a complication. During her stay, she fell and hit her head and passed away a week later. She was terminal, in a lot of pain, and she didn’t have much time–so her fall was probably a blessing in disguise.
I was diagnosed with Graves disease at age 31, which caused me to miscarry while trying for our fourth child. After successful treatment for Graves, I became pregnant again and successfully carried our fourth child to term. In the meantime, my sister was diagnosed with Hashimoto’s thyroiditis, had a thyroidectomy and shortly after that a hysterectomy. She wanted to find out why these thyroid issues were happening to our family and pursued genetic testing. She lives in Ohio, and after testing positive with PTEN, she consulted the PTEN Team at The Cleveland Clinic. I was still moving around the U.S. because my husband was an Army, helicopter pilot. Upon recommendation from Cleveland Clinic, my brother and I were also tested and confirmed for PTEN. I was asked to join the study, but at that time my husband was deployed to Iraq, and I had four small children at home, so I never pursued it.
Two years ago, my husband’s 45-year-old sister passed away from breast cancer. His mom and grandmother also passed away quite young from breast cancer, so he and I went back to a geneticist and got tested for the BRCA gene. We were thankfully both negative, but the geneticist referred me to Cleveland clinic again and to the PTEN foundation. I decided it was time to learn more about PTEN and become my advocate because many doctors are not knowledgeable about PTEN mutations. Living in Madison Alabama, I was lucky enough to attend the International PTEN Patient Symposium this past March and finally met Kristin Anthony, President and founder of the PHTS Foundation! We heard presentations from the most knowledgeable physicians from around the world and were able to ask a specific question and receive expert feedback from them directly. We were able to share stories of triumph and encourage others that are going through a difficult time because of our rare genetic disorder.
I continue to seek information about PTEN, the conditions for which I must remain vigilant, and realize that there is much to be learned. The possibility that a cure will be realized in our lifetime keeps me fighting this disease!