Read the personal stories and blogs of others facing issues that may be similar to your own.
We encourage you to not only read the journeys of others but also document your own so that others may draw strength from your experiences. Write in a journal, create your blog or share your story with NSFC. Sharing stories with others is what our community is all about.
Knowledge gives you power; sharing gives you strength.
Go Without Your Gut My Journey Of Losing My Stomach Due To Hereditary Diffuse Gastric Cancer Syndrome.
After Heather’s mother passed away at age 44 of gastric cancer and losing her grandfather to this disease, she wanted to do everything in her power to be proactive about her health risks, especially for her husband and three-year-old daughter. At the age of 30, she was referred from her hometown clinic to Mayo Clinic in Rochester, MN where she met with a genetic counselor and decided to proceed with genetic testing. In July 2015, Heather learned that she tested positive for the CDH1 mutation. She is tentatively scheduled for total gastrectomy in August 2016. Follow along as she shares her story, Gut Feelings: A CDH1 Journey. October 2015.
Roger Engnell was diagnosed with a CDH1 gene mutation on February 9th, 2015. He is 53 years old and the father of three. He is the middle of seven children and the second to be diagnosed with this mutation. The original mutation in his family was found as a result of testing done on his younger sister who was battling breast cancer. On August 4, 2015 he will be the second in his family to have the surgery to remove his stomach. This is Roger’s story as it unfolds.
In 2006, Adriana Walsh lost her father Steve to stomach cancer when she was just 13 years old. In 2009, she learned that she tested positive for the cdh1 mutation that took her father’s life. Her most recent endoscopy in August showed evidence of stomach cancer, so she took immediate action and had her entire stomach removed. Read about how Adriana, now 21, faced her diagnosis and follow her hope-filled, positive recovery from surgery in Young and Stomachless September 2014
“Sometimes the bad things that happen in our lives put us directly on the path to the best things that will ever happen to us”
December 5, 2013 – My husband, my mom, my dad, and I sit around a round table at the hospital waiting for the genetic counselor to join us. My husband is playing with a peg game in the room while my mom, dad and I discuss where to eat lunch that day after the appointment. It’s 11 am. The genetic counselor joins us at the table.
‘We received the results from your blood test and unfortunately, you tested positive for the CDH1 gene mutation’.
At 29 years old, I had a solid five-year plan. On December 6th, all of this changed. Missing Cytosine…frameshift mutation…risk of hereditary diffuse gastric cancer.
My name is Rachel and this is my story about living with Hereditary diffuse gastric cancer syndrome. Cytosine Deleted – Life with the CDH1 genetic mutation
Steve Dang is a husband, father, pastor, wannabe triathlete, motorcycle enthusiast, a fan of good stories and the Oakland A’s. Cancer is part of his story, but it’s not the story. In October of 2013, their lives took a detour when Steve was diagnosed with CDH1, which led to a total gastrectomy on March 6, 2014. CDH1 took the lives of his grandma, aunt, father, and sister at a young age, but now, medicine has changed the story of stomach cancer in his family. Today he’s rebuilding his life to return to the things he loves: faith, family, motorcycling, and triathlons. Since then his blog, Steve Dang, has been about telling their story and the story of God’s faithfulness throughout their journey. Enjoy the ride.
In September 2013, Kate discovered she carried the CDH1 gene mutation. At a very young age, Kate lost her mother to stomach cancer and more recently, her younger sister. Though it seemed extreme at first, she decided the only option would be to have a total gastrectomy and underwent surgery in February 2014; the day after her 26th birthday. Losing her sister so young and learning about the gene mutation made Kate realize how short life can be and gave her the motivation to start doing the things in life that she’d always wanted to do. This prompted her to start a Bucket List and led to her creating her blog It’s the beginning, not the end to reach out to others carrying the CDH1 gene mutation and to share her stories as she starts to tick off items on her Bucket List.
We’re sisters/best friends writing about our lives and how it’s changed since we found out our mother at 56, was diagnosed with Stage 4 stomach cancer in December of 2012.
Journaling and writing notes to each other are sometimes the easiest way to communicate in those moments we can’t pick up the phone and talk. So we’ve decided to chronicle things, as we go and in no particular order to help us remember her and everything she went through when she’s no longer with us. Sometimes the only way to get through something like this is to learn as you go so as we figure things out, we’d like to pass it on whether good or bad and hope it helps in some small way. The 6th Opinion
Rick Sabbides was diagnosed with Stage IV inoperable stomach and colon cancer on June 25, 2013. Unfortunately, Rick succumbed to this disease in 2016 but his legacy and memory live on in the book Faith Over Fear which was written by his daughter Kristi in 2019. You can purchase the book on Amazon with a portion of sales donated to our mission.
In December 2012, Marne learned she had the CDH1 gene mutation. After losing her father, aunt, grandmother, and others in her family throughout her life, she knew she was not going to let stomach cancer beat her. On June 7, 2013, she had a total gastrectomy. Marne shares her story, Life Without A Stomach, in the hopes that it helps others who are preparing for or dealing with a TG and CDH1 mutation.
I was contacted in October 2012, just after my 1-year post op total gastrectomy anniversary on September 1, 2011. A Faces of Cancer calendar and a documentary was being done on twelve cancer survivors in the area. I jumped at the opportunity to share my story, feeling like this was my way to spread awareness about stomach cancer. I was quite nervous about being filmed, and a photo shoot followed. I was just simply asked to tell my story and it was difficult. The calendar was very moving as each one of us had our own month. Thanks to Michael Brethour for doing such a wonderful fundraiser for cancer every year. Here is my video story. Terri Maxwell
Within the last few years, I’ve lost two close family members to stomach cancer. In 2008, I lost my cousin Rajen Sankar at age 37. In January 2012, I lost my other cousin, Sandra Sankar Poukkula (Rajen’s younger sister) at age 39. Rajen and Sandra were like an older brother and sister to me.
Back in the 90s, I also lost my aunt (my mom’s sister) of stomach cancer. This was before we knew anything about HDGC.
In Spring 2011, it was discovered that my family carries a mutation in the CDH1 gene, causing hereditary diffuse gastric cancer (HDGC). Four years ago, when Rajen died, we never knew about any of this. It was my cousin, Sandra who became proactive in stomach cancer awareness and research. I followed her lead without hesitation. She yearned to find answers after she herself was diagnosed with gastric cancer in 2011 and did the ultimate action to fight. She removed her entire stomach to prevent cancer from spreading. Unfortunately, this drastic action was not enough and cancer metastasized in other parts of her body Christmas 2011. We lost her a few weeks later, on January 13, 2012. See Sandra’s story below. (February 2011)
More recently (May 2012) and with a heavy heart, my mom (age 59) has been diagnosed with diffuse gastric cancer as well. I am writing this blog to document the journey before me. As hard as it will be to write, I think it is important to share this experience and promote awareness of HDGC. Knowledge is power.
No Stomach For Cancer was deeply saddened to learn that Sandra Sankar lost her battle with stomach cancer on January 13, 2012, at the age of 39, just over a year following her diagnosis. Sandra was a loving and giving woman, determined to tell her story and to make a difference in the lives of others. Sandra’s family shares their video tributes in loving memory of a remarkable young woman.
A tribute to Sandra’s brother, Rajen, who lost his battle to stomach cancer at the age of 37.
RJ Sankar, September 4, 1970, to February 10, 2008
An ordinary woman on an extraordinary journey. I am a daughter, a sister, an aunt, a wife and mother of two… and this is the little diary of my journey through gastrectomy. I live in Brisbane, Australia. Tammy shares her story HDGC & Me.
Teresa Feeney’s blog Latest Skinny. Teresa is the fifth member of her family to undergo a total gastrectomy in as many years.
Within 7 weeks of CDH1 diagnosis, I had a total gastrectomy in Sheffield, England at the age of 31. I live with my wife and son in South Yorkshire, England whilst learning the ways of stomachlesslife! Lee’s story HDGC and me.
I am Megan McFetridge, a medical assistant working for Bryn Mawr Rehab in Malvern, Pa. since Sep 2007. Working with stroke and brain injury patients has taught me to treasure my health and never take life for granted. In November of 2007, after my older sister (28) was diagnosed with HDGC, I found out I had the same CDH1 gene mutation that we inherited from our mom (Jeannie Marie McFetridge 4/16/60-2/23/03). This spring, I decided to get the prophylactic TG. My surgery is scheduled for September 28, 2009. This is my story.
Allison Levine (Ali) was diagnosed on April 10, 2008, with signet ring cell carcinoma (gastric cancer). Ali ended her courageous battle victorious on Monday, March 9, 2009, at the tender age of 32. Allison’s journal & inspirational comments of visitors are a testament to her extraordinary character (Kia Kaha) & compassion. Shortly after her passing, we discovered results of genetic testing revealed a mutation of the CDH1 gene. Our family now enters a new phase of this journey to determine additional genetic results of Ali’s parents, sister (her daughter if necessary) and eventually – our nearly 3-year-old son Noah. March 2009
Chad Sapieha’s blog, Gutless. Chad had his total gastrectomy on March 2, 2009. He lives in Toronto, Ontario.
March 18, 2009, my life was changed forever when Tracey Leedom (Duke Geneticist) conveyed to me that I was a carrier of the CDH1 genetic change that my mother and grandmother have. Bethany Tucker’s story.
Karen Chelcun’s journey through total gastrectomy at the age of 51. Karen lives in Madison WI. and is the Founder of No Stomach For Cancer