The FORCE Blog
Our blog features information and personal perspectives on topics of interest to the hereditary cancer community.

Stay up to date on research and information

Sign Up for FORCE Newsletters
Education > Our Blog > Lynch Syndrome Lurked in My Family’s Genes for Years Before Colon Cancer Took My Son

Your information is used for the sole purpose of sending information about hereditary cancer and updates on FORCE programs and campaigns. To stop receiving these updates, click unsubscribe at the bottom of any email. If you need additional support, or have any questions, please contact [email protected].

Lynch Syndrome Lurked in My Family’s Genes for Years Before Colon Cancer Took My Son

March 01, 2023

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.

Posted in: Men With Mutations , Stories , Diversity And Inclusion
Tags: Genetic Counseling , Genetic Testing , Lynch Syndrome , Colorectal Cancer


August 3, 2023

Trina Waniga says:
I was deeply touched by the NPR piece today on genetic testing (8/3/23), which included sharing you family's story. One positive aspect of the internet is that even though we may never meet I can reach out and say "thank you-this piece of information Is important to me too", and I would not have known about it except for your honoring yourself and your son by sharing it. I too am sorry for the untimely passing of your son.


April 3, 2023

Leslie says:
My sincere condolences for your loss. It’s a bittersweet situation to suffer loss and at the same to identify a genetic condition that could save other family members by early detection. May the Lord strengthen you and heal you and continue to give you and your family peace as you make awareness your fight against cancer.


March 12, 2023

Victoria Esannason says:
Thank you for being open, sharing your pain and love for your son Jeremy. It’s easy to miss Jeremy. Because of you all, he was an awesome young man. You all did everything God allowed you to do. Our family was blessed to know Jeremy Nottingham. Thank you for sharing him with us. Being open about your family’s history of this horrible disease, will help others; known and unknown to you. Prayers to you and your family. Thanks again for sharing.


March 8, 2023

Thelma D. Jones says:
Thank you for sharing your powerful story. My condolences on the loss of your precious and beloved young son. You were referred to me by Sheri Denkensohn Trott, an Ambassador for the Thelma D. Jones Breast Cancer Fund. I would like to invite you to speak at the Thelma D. Jones Breast Cancer Fund ( in the near future and look forward to connecting with you and Sheri about welcoming you perhaps in partnership with the Howard University “Men Take Ten Program” for which I am closely affiliated..


March 7, 2023

Robin Sheppard says:
What a beautiful young man. This broke my heart. Thank you for sharing this.


March 3, 2023

Charletta Sowell says:
Wow, Thank you for sharing this very heart wrenching personal story. It certainly has peeked my interest in following up on family disease. You are a brave man and I wish you and your family all the best. Your friend now retired from Florida Blue.


March 2, 2023

Angela says:
Junius, thank you for sharing!


March 2, 2023

Ginger says:
Thank you for sharing this story and honoring your son!


March 1, 2023

Stephen Mahmood says:
I am sorry for your loss and what you are going through.


March 4, 2023

Dee says:
I’m so sorry for your loss. Thank you for sharing your story.


March 5, 2023

Paige Van Pelt says:
I, too, have Lynch Syndrome (MLH1) and recently lost my uncle to metastasis after his third colorectal cancer. I have read research that indicates that initially treating an MSI-high, dMMR cancer with standard of care Fluorouracil not only fails to be curative, but creates a more complex cancer to treat. I hope you will be closely monitored and, when treated, be followed by ctDNA testing. There are oncologists who will treat Lynch Syndrome cancer initially with immunotherapy, but you might have to interview six oncologists from prestigious institutions before you find the one who will. There is good treatment for Lynch Syndrome cancer patients, but it's not easy to get. Dana Farber has much awareness. My oncologist is currently running the Immunotherapy program at Weill Cornell. Colontown on Facebook has a Lynchville neighborhood that can help you stay abreast of treatments and providers. Best of luck in advocating for yourself and family in this journey!


Leave a Reply