Blog Post on facingourrisk.org
March 01, 2023 - https://www.facingourrisk.org/blog/lynch-syndrome-lurked-in-my-familys-genes-for-years-before-colon-cancer-took-my-son?fbclid=IwAR0MqYlJbWSes2n1HDK3HnfJKtS0ycW0URGY0l4R4s5o9vwZNflfnUoE_VY
via The FORCE Blog: Our blog features information and personal perspectives on topics of interest to the hereditary cancer community.
Lynch Syndrome Lurked in My Family’s Genes for Years Before Colon Cancer Took My Son
by Junius Nottingham
During my approximately 30 years as a federal agent and supervisor, I worked undercover on numerous occasions and supervised many white-collar crimes involving doctors, lawyers and nurses. Yet none of my work or life experiences prepared me for what happened in the fall of 2019.
My only son, Jeremy, spent four years with the U.S. Secret Service as a special agent. He worked out twice a day, and physically, he was the epitome of health. While vacationing with our family in Florida - he was 28 at the time - he told my wife that he was bleeding when he had bowel movements. We assumed that Jeremy had hemorrhoids and suggested that he see his doctor when he returned to his duty station in Birmingham, Alabama.
A shocking, unexpected diagnosis
The rest of this blog will read like a nightmare. The day after Jeremy returned home, my wife and I received a telephone call from his doctor, who explained that Jeremy had stage 4 colon cancer. We looked at each other in total shock, trying to figure out what our next steps should be. The following day, we received another call from the doctor, saying that Jeremy’s cancer had metastasized to his liver. That was when we were introduced to a foreign term that will forever be a part of our lives: “Lynch syndrome.”
Jeremy had a rare genetic type of hereditary cancer linked to the MSH2 gene, and my wife, my daughter and I all needed to be tested immediately for the same mutation. In 48 hours, our lives changed completely. I cut our vacation short, as there were many decisions to be made. I first called Jeremy to tell him that he should not be by himself; either I would come to Birmingham or he could live with us in Virginia.
After Jeremy joined us in Virginia, we visited John Hopkins Hospital for an initial consultation.
We also went to the Cleveland Clinic in Ohio. We were determined to help Jeremy get through this with God’s divine intervention.
Genetic testing and a second diagnosis in the family
During this time, we awaited our genetic test results to see who else in the family might have Lynch syndrome. I tested positive for the MSH2 gene mutation, which is associated with Lynch syndrome. I had a colonoscopy in January 2021 and was diagnosed with stage 1 colon cancer, which necessitated surgery. I was completely overwhelmed. I could not understand how I had never heard of Lynch syndrome before.
My mother, grandmother and two of my aunts all died from ovarian cancer but it was never suggested that our family consider genetic counseling or testing. I later learned that when there is a history of cancer in one’s family, it is important to consult with a genetic counselor in case genetic testing is recommended.
We continued to take Jeremy to countless doctor appointments which included chemotherapy, immunotherapy and other potential paths to remission. Jeremy stayed positive and upbeat during the entire process. At the time, he was a lot stronger than I was. He fought as hard as he could until God decided to bring him home to peace, comfort and rest on November 22, 2021. Although Jeremy was only 30 years old when he passed, he lived a life that was full. He was blessed to work as a federal agent and to meet many people. And he was always positive and thankful.
I think about Jeremy every day, wondering what we could have done differently to prevent this from happening to a special, kind and compassionate young man who was not yet in the prime of his life. I also live with the fact that I unknowingly passed the gene mutation on to him.
I am committed to honoring Jeremy by sharing my family’s story with others.