by Marcy Friedman
My first cancer
In October 2003, at the age of 47, I was diagnosed with breast cancer and became a member of the Cancer Club. Subsequent testing showed I did not have a BRCA mutation. Nobody in my family had ever had breast cancer, so I was not surprised. I had a lumpectomy, radiation and chemotherapy, and moved on with my life.
My second cancer
In 2008, as I was nearing that important five-year survivor milestone, I started experiencing pelvic discomfort and frequent urination. Over the years I had several urinary tract infections and kidney stones, so I felt pretty sure it was one of those. I planned to call my doctor in a few days if I didn’t feel better. Then, in the middle of the night, I awoke and found myself bleeding, and the cramping was worse. Now I was scared.
The doctor said it was likely kidney stones, but because of my cancer history, he sent me for a pelvic and abdominal CAT scan. It did appear that I had passed some kidney stones, but I also had a mass on my uterus. An immediate exam with a specialist confirmed I had endometrial cancer. The crazy thing is that the bleeding was supposedly due to the kidney stones. Although bleeding is a sign of endometrial cancer, it turned out my uterus was fused closed. Therefore, if not for the kidney stones I would not have bled. I would have gone to the doctor at some point for the pain, but the kidney stones got me there sooner!
A careful oncologist suggests genetic counseling
I underwent a total hysterectomy and chemotherapy for a second time in my life. My new oncologist, who was a partner with my breast oncologist, noticed that my medical history included two aunts with colon cancer. Neither of my parents had ever had cancer, and they died of other conditions, so my oncologist suggested genetic counseling and possible testing for Lynch syndrome, which I had never heard of.
Testing proved I had Lynch syndrome. This began my journey of yearly colonoscopies and endoscopies, urology and dermatology visits, and routine visits with my breast doctor, gynecological cancer specialist and oncologists.
Sharing with family
I informed my family, including my brother and cousins, of my Lynch syndrome. Other than my two aunts, I know of no family member who had cancer or had been diagnosed with Lynch syndrome. One of my parents had Lynch syndrome, but I’ll never know which one. More importantly, I was advised that my two sons should be tested when they turned 25. I went with each of them to my genetic counselor. I was joyful when my eldest son was negative. Three years later my second son tested positive. He handled the diagnosis well. It was far more difficult for me to hear of his Lynch syndrome diagnosis than my own.
I’m now 17 years breast cancer-free and 12 years endometrial cancer-free. My son is doing well and he and his wife are due to have a baby. The best part of this story is that in vitro fertilization with genetic diagnosis ensured their child does not have Lynch syndrome. My family’s story with Lynch syndrome ends with me.
I learned of FORCE during my breast cancer treatment, and it became a great resource for me. After retiring two years ago, I wanted to get more involved in sharing awareness of endometrial cancer and Lynch syndrome. FORCE’s expanded mission to include those with Lynch syndrome felt perfect, and I will now be a Peer Negotiator and have the chance to help others.
I have been lucky enough to have the support of family and friends, as well as a team of doctors who provided me with excellent care and emotional support. I’m a survivor and I’m so grateful. Knowing that my son and I have Lynch syndrome allows us to be proactive in the process of early detection and cancer prevention. Knowledge is power! Giving support and empowerment to other Lynch syndrome and cancer survivors has given me a new purpose.