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Supporting Research. Empowering Families.

Read the personal stories of others facing issues and challenges with stomach cancer 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 own website 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.

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Linda Stokes

After being diagnosed with breast cancer in April 2015, genetic testing revealed I had the CDH1 gene mutation. In June of that year, I chose to have a double mastectomy rather than a lumpectomy as anticipated with the original diagnosis.

I found no local medical professional who knew anything about CDH1 and only got referred to Dr. Mansfield at MD Anderson through a fluke friend of a friend. Finding so little information about CDH1, I appreciated a couple of blogs I found and read early on.

While I probably knew I would do it for over a year, I made the formal decision in November 2016 to have my stomach removed and had my total prophylactic gastrectomy at MD Anderson on February 21, 2017. I created the blog "How Breast Cancer Saved My Life: CDH1 – The gene nobody's heard of" to give back and help others in the same way that I had been helped.

Juan Manuel

I am Juan Manuel (44) from Argentina.

My father died in 2013 (Gastric Cancer) and I knew I had the CDH1 gen mutated in 2016. I past through a total gastrectomy in 2017 and I wrote all the journey in my blog (IN SPANISH)

I am living a plenty life as I did before the surgery so I hope my experience can help someone in the same situation.


I'm a mother, a friend, a sister, a daughter, and a devoted physician who has become the patient. After a series of serendipitous events, I was the first person in my family to be discovered to have a rare genetic mutation called Gastric Adenocarcinoma and Proximal Polyposis Syndrome (GAPPS). Like other hereditary gastric cancers, this mutation gave me a near-certain risk of developing gastric cancer. Due to the nature of the mutation, to find out if I had cancer or not, and to prevent it from happening in the future, I had a total gastrectomy on August 13. 2019. This blog chronicles my journey. Please join me for the wild ride and my now stomachless life.

Jon Grossman

My name is Jon Grossman, and I want to thank you for all that you have done for me, my family, and my fellow CDH1 mutation carriers. In 2016, we found out that a CDH1 mutation runs in our family. Now, 4 of us have had total gastrectomies and are doing great.

I published a website to tell my family's story ( It's a mix of my personal experience and what the published research/medical papers say. I am also working on a website for making and sharing recipes. Users can make recipes and the application calculates a food label. Plus, one of the features is to search for recipes posted by people without a stomach.

My Pink Genes

I chose the name "My Pink Genes" because, for one, pink is my favorite color, and for another, I was diagnosed with a highly aggressive form of stage 3a breast cancer in 2018 at 32 years of age (grade 3 invasive lobular carcinoma - pleomorphic type ER-, PR+, HER2- in cancer speak).

Pink being the color of the breast cancer ribbon seemed fitting. The "genes" portion comes into play because, after my diagnosis, I had genetic testing and found out I am a mutant! No, not the cool kind! I am positive for a pathogenic variant in CDH1, which is associated with an increased risk for lobular breast cancer and hereditary diffuse gastric cancer (a rare and very deadly form of stomach cancer).

I had been blogging since my breast cancer diagnosis on February 27, 2018. Since writing and journaling have always been a positive stress reliever in my life, I have found joy and purpose through writing. I initially wanted to keep friends and family updated, and writing is easier than trying to keep up with phone calls and such. But, I also had this burning desire to share my story so that others seeking information or inspiration can follow along in real-time. And so far, it has served both of these purposes well.

Heather Huus

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.
May 2015


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 counsellor 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 11am. The genetic counsellor 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
April 2014


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.
April 2014


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 gastrechtomy 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 realise 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.
February 2014

The 6th Opinion

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 is 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
January 2014


Rick Sabbides was diagnosed with Stage IV inoperable stomach and colon cancer on June 25, 2013. His CaringBridge journal was created to keep Rick’s friends and family posted on his journey. Follow along at Rick Sabbides FAITH, a place where anyone can offer support and words of hope and encouragement to Rick and his family.
November 2013


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.
July 2013


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 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
July 2013


This Cancer Thing Sucks: A Hereditary Diffuse Gastric Cancer Blog

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 the cancer from spreading. Unfortunately, this drastic action was not enough and the cancer metastasized in other parts of her body Christmas 2011. We lost her a few weeks later, 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.
June 2012


Lana is Taking Care Of My Mom Who Takes Care Of Me

They say there’s a special bond between single mothers and their children. When I was 8-years-old, I lost my father to lung cancer and my mom became the sole provider. She worked hard to make sure our needs were met. And like many immigrant families, she put all her dreams in the success of her children.

My blog chronicles my dealings with the big C as a young caregiver, the highs and the lows, and the things that happen in between when life collides with cancer. My mother has since passed away, and now I continue the story of life after caregiving.
May 2012


Sandra Sankar, from beautiful San Diego … My only brother died from gastric cancer at 37. I was diagnosed at 39 and found out that I have a CDH1 genetic mutation which I inherited from my dad who does not have gastric cancer. I had a total gastrectomy on Feb 18, 2011 and am still going through chemotheraphy. I am hoping to get back to my prior activities after this is through. I have put together a web site documenting my experience.
February 2011

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.

Sandra Sankar Poukkula, February 10, 1972 to January 13, 2012
Remembering Sandra

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 my little diary of my journey through gastrectomy. I live in Brisbane, Australia. Tammy shares her story HDGC & Me.
July 2009


Within 7 weeks of CDH1 diagnosis I had a total gastrectomyin Sheffield, England at the age of 31. I live with my wife and son in South Yorkshire, England whilst learning the way’s of stomachlesslife! Lee’s story HDGC and me.
November 2009


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 prophalactic TG. My surgery is scheduled for September 28, 2009. This is my story.
September 2009


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 2009


In three years’ time (2001-04), Rose Evans witnessed the deaths of four family members. They all had had stomach cancer. Genetic testing revealed that all four — her father, her sister, and two of her aunts (her fathers’ sisters) — had a mutation of the CDH1 gene. In 1960, her paternal grandmother had also died from stomach cancer at the age of 57. After testing positive for the gene in 2006 (at the age of 42), Rose was the first in her family to have her stomach removed to prevent diffuse gastric cancer. Rose shares her family story In the genes….

The Stomach-less Sisters

When you think of gastric cancer you probably don’t picture healthy sisters in their early 30’s, but we are the faces of gastric cancer.

Our family history is riddled with stomach, colorectal, and breast cancer, so at the urging of our doctors we underwent testing to determine if there was a genetic component at play. In early 2016 we both tested positive for a mutation on our CDH1 gene, giving us an 83% risk of developing hereditary diffuse gastric cancer (HDGC) and a 53% risk of developing lobular breast cancer. While there are several screening options in place for the breast cancer there is currently no effective screening or testing for HDGC and in most cases the cancer is not detected until it is in an advanced stage. We spoke with three separate surgical oncologists and learned that the only feasible option we had to prevent this cancer was to undergo a prophylactic total gastrectomy and since the risks for HDGC increases in your 30’s we were advised to have the surgery soon, as we were 31 and 34 at the time. On May 24, 2016 we both underwent a prophylactic total gastrectomy. One week later pathology came back on our stomachs and we learned that we both had stage 1 HDGC at the time of our operation. We had no outward signs of cancer and only a month before we both underwent an endoscopy with over 40 biopsies taken and nothing showed up for either of us.

A lot has changed in our lives since our surgery. We’ve lost weight, our eating habits are very different, and we’ve each faced our own hurdles and complications. More importantly, we each have a new joy and appreciation for our lives, for our beautiful children, for our loving family, and for our supportive friends. We have three little boys between the two of us and we know that they each have a 50/50 chance of carrying the same mutation. Our focus now is on raising awareness and money for better screening for HDGC in the hopes that when our boys are older they will have options other than a total gastrectomy.

We are so grateful that we were able to learn about our CDH1 mutation and remove our stomachs before our cancer had advanced beyond stage 1. We urge anyone with a family history to undergo genetic testing and know what options are available to you. Cancer does not have to be a fear hanging over your head, you can take control! You can follow our journey here.