An Unfortunate but Lifesaving Discovery
Every few years, Beth Lambert and her brother Mike Walsh participate in the Genetic Counseling Program’s Personal Narratives Series in January to share their story with students.
It begins with the loss of their brother, Stephen, to stomach cancer and continues with the discovery of a link between Stephen’s diagnosis and their mother’s colon cancer. With the guidance of Devanshi Patel, MS’02, a genetic counselor at the Massachusetts General Hospital's Center for Cancer Risk Assessment, the family ultimately identifies a pathogenic variant in the CDH1 gene, which causes Hereditary Diffuse Gastric Cancer. Patel then guides the family through the journey of identifying the gene variant across their extended family.
"We are so grateful for the opportunity to share our family's story, to honor our brother Steve and all those who have died from stomach cancer, and to directly impact future medical professionals who will help others navigate their genetic testing and, possibly, some type of diagnosis,” Lambert said about continuing to share her family’s journey over the last 10 years with students at the Brandeis University Genetic Counseling Program.
Throughout the years and multiple iterations of their family’s story, there are threads that have remained unchanged. The sarcastic banter between Lambert and Walsh as they describe having their stomachs removed on the same day in 2007 at Massachusetts General Hospital allows for a brief moment of humor in which the room collectively chuckles. It remains a portion of their tale that they, amazingly, continue to find the light-hearted comedy in, which stands in stark juxtaposition to the family’s harrowing situation.
Another consistent thread is the resoluteness with which those at risk have pursued testing to determine whether they inherited the familial variant. The determination to do so reminds listeners of the power and benefits of knowledge even under the worst of circumstances. And finally, a steadfast appreciation of their genetic counselor, Patel, who has been with family members every step of the way, illustrates the value of a profession that combines science and empathy to provide guidance and compassion to individuals or families affected by genetic conditions.
Each time Lambert and Walsh make the trip to Brandeis to speak to students, their story has evolved. With the passage of time, their family has changed; Lambert and Walsh’s children, who often come to campus with them, have grown from being young and silent to young adults with their own stories to share. Those who have tested negative discuss their simultaneous feelings of relief and guilt. The family members who have learned they also have the familial variant have shared their decision-making process of when to undergo prophylactic gastrectomy.
The family narrative continues to grow year after year as the next generation of children within the family discover whether they too have inherited the variant. Their story illustrates the far-reaching effects of an inherited variant in a cancer predisposition gene and its impact on the lives of everyone in the family.
Lambert and Walsh have shared their family’s story in the news and to students on campuses across the state. They want others to know that, despite the loss of their brother, the discovery of the gene variant saved their lives, their sister Kathy’s life, and potentially the lives of some of their children, nieces and nephews. They educate families and healthcare providers about this rare condition in the hopes that another family will be able to identify that they are at risk early, and take definitive steps to save some of its members, just as they have done.
“Having spoken to a number of different groups of genetic counseling students through the years, it is clear that Brandeis' genetic counseling program is top-notch not only because of the curriculum and professors, but also because of their focus on patient educators,” Lambert said. “It is one thing to learn from a textbook and from lectures; it is something else to learn from those whose lives have been touched by disease and have worked directly with genetic counselors and other medical professionals.”