A diagnosis of Hereditary Diffuse Gastric Cancer syndrome (HDGC) in a single individual is a family diagnosis and has implications for past, present and future generations.
Faces of HDGC
Hereditary Diffuse Gastric Cancer (HDGC), caused by a mutation in the CDH1 gene, is now estimated to have a population incidence of approximately 5-10/100,000 births (2020).
Faces of HDGC
Hereditary Diffuse Gastric Cancer (HDGC), caused by a mutation in the CDH1 gene, is now estimated to have a population incidence of approximately 5-10/100,000 births (2020).
A diagnosis of Hereditary Diffuse Gastric Cancer syndrome (HDGC) in a single individual is a family diagnosis and has implications for past, present and future generations.
Our Faces, Our Stories
Understanding the ramifications of this diagnosis can be learned from the people who have been diagnosed with this hereditary cancer syndrome.
Together we stand strong and we will continue to support the HDGC research that will provide better treatment options, for those at risk now, and for future generations.
If you would like to share your story please contact Polly and Taylor at sisters@beetingenes.com to schedule an interview.
Meet Stephanie
She shares her experience and emotional details regarding her diagnosis of the CDH1 mutation.
Meet Becca
Her story is one of unexpected and unanticipated events. You don’t want to miss our conversation with her. Thank you Becca for sharing and for your help in raising awareness of this sneaky type of cancer.
Meet Jessica
She was diagnosed with CDH1 in 2016 and in the same year had her total gastrectomy. Her road was bumpy but ultimately has had a truly incredible outcome.
Meet Summer
If you’ve had questions about caring for kids during and after the surgery and even becoming pregnant without a stomach, then this the interview for you! Summer, you are so incredible and brave.
Meet Erica
A wife and mother of 3 who in this same year had a double mastectomy and total gastrectomy. She is a carrier of the CDH1 mutation. Just 7 weeks ago her stomach was removed and she shares with us her recovery process and personal experience. You are a truly incredible role model for your family and everyone who is struggling in their journey.
Meet Tia-Brooke
It will be 2 years in February of 2022 since her gastrectomy and she has so much advice to give. You are such a bright light and you radiate positivity.
Meet Karissa
She just celebrated her 2 year total gastrectomy. Karissa lost her mother to diffuse gastric cancer and through genetic testing was able to eliminate that risk for herself. Her road to recovery was not easy but now today she is thriving!
Meet Kris & Kerrie
Sisters, breast cancer survivors, and stomachless twins! They shared with us so many of their personal experiences that are full of tips and tricks! You girls are incredibly positive and it was such a joy to talk to you. You are true warriors! You made it seem like anything is possible.
Meet Nancy
She shares her incredible story in which she persevered and came out on top! If you ever have a question regarding stomach or breast cancer, she’s your girl! You are such a courageous person!
Meet Emily
She talks about her diagnosis of stage 4 stomach cancer. Currently Emily is receiving chemotherapy and awaiting new treatment options at UCSD. Her positivity and happiness shines bright! We could all take a lesson from Emily! We are saddened to share the news of Emily’s passing. Thank you Emily for being such a bright light in our Iives. We will always remember your positive attitude and zest to live every day to its fullest. 7.10.1999 – 8.12.2022.
Meet Stacy
She talks about her lifesaving journey through gastrectomy and double mastectomy. Her humor, positive energy and outlook on life are beautifully contagious and also extremely helpful!
Meet Amanda
She shares her personal journey through gastrectomy and mastectomy. Learn how she is dealing with effects after 4 years without a stomach. Thank you for your vulnerability and wisdom.
Meet Kelle
We hear how her sister Carmen Brown was taken to the ER for late stage symptoms and was sadly taken too soon. Kelle then tested positive and dove head first into what she needed to do. You are incredibly brave and beautiful!
Meet Cheryl
She shares her journey with gastrectomy and mastectomy. With a long family history with stomach and breast cancer, it was a difficult decision that had to be made. She shares her story and wisdom that she has been through over the last 3 years.
Meet Kate
She shares her new life after breast cancer resulting in mastectomy and then discovery of the genetic mutation CDH1 which ultimately lead to her total gastrectomy. You are incredible and will give hope to so many!
Meet Christine
She shares her battle with stage 3b lobular carcinoma, undergoing multiple surgeries for breast removal and reconstruction, and a long 6 week hospital stay that almost ended her life for gastrectomy. Her story is extremely emotional, eye opening, real, and beautiful!
Meet Parry, Jamis & Isaia
We had the privilege of speaking with Parry Guilford and the Piho brothers, Isaia and Jamis. Through the loss of their mother and their sister’s diagnosis of stage 3 stomach cancer, the brothers learned they were also carriers of the CDH1 mutation. Thank you guys for sharing your journeys and adding humor to an otherwise scary and difficult diagnosis. Thank you Parry for all the work you are doing. You are giving hope to all the families currently battling this mutation. And a special shout out to all of the scientists in your lab!
Meet Thad
He was diagnosed with Stage 2B stomach cancer following a total gastrectomy. Thad shares his incredible journey through his treatment and healing process. With his wonderful family by his side, he has discovered so many fabulous tips and tricks to help others going through this experience.
Meet Nicole
Nicole learned she is a carrier of the CDH1, BRCA2 and PALB2 mutations. These discoveries led to her total gastrectomy and bilateral mastectomy. Her journey was extremely turbulent, but 3 years later has come out of the countless surgeries and is beginning to see the light at the end of the tunnel! You are an inspiration to so many of us!
Meet Alisa
She battled stage 2b lobular breast cancer and underwent a double mastectomy and chemotherapy. 3 months ago Alisa had her total gastrectomy with little complications, perhaps due to her positive outlook. The power of the mind is extremely important when undergoing such a huge surgery. We could all learn a thing or two from Alisa!
Meet Meagan
After a battle with stage 3 colorectal cancer, she discovered she carried the gene mutation CDH1, and immediately made the appointment to have her stomach removed. Her inspiring story makes our decision that much easier.
Meet Angie
5 1/2 years past her total gastrectomy, and 2 years past her mastectomy, we learn how strong willed and determined she was to overcome her challenges. Mental health and having a support system are both extremely important in this process.
Meet Rachel
At 23 years old, she made the life changing decision to remove her stomach. We pray we can all have a recovery like you.
Meet Kathryn
She shares her journey of gastrectomy. Kathryn’s relationship with God is so strong and has allowed her to see this as a humbling experience. She now sees the importance of the little things in life and is living each day to its fullest.
Meet Taylor & Polly
Two sisters who share how they have come to their decision to move forward with having mastectomy and gastrectomy.
Meet Anders
Seven years out from gastrectomy, with his wife and 5 children by his side, he has persevered with a positive mindset and is now living his best life.
Meet Gabrielle
After finding out she was a carrier at a young age, Gabrielle knew gastrectomy was a choice that had to be made. Her determination and positivity allowed her to bounce back to her normal self quickly.
Meet Elise
After receiving the news that she was a carrier of the CDH1 genetic mutation, these surgeries were an easy decision for her. We learn about her recovery process including tons of wonderful tips and tricks that will hopefully help others.
Meet Latruth
After losing his mother and sister to gastric cancer, and also discovering that he had cancer, he knew gastrectomy was a necessary choice to make. His diet and lifestyle play a huge part in his recovery and healing process.
Meet Marie
After having her prophylactic gastrectomy and having zero signs of cancer on pathology, later doctors discovered the gastric cancer had spread to her vagina and is now in her lungs. You are a rockstar Marie. The way you have handled all the ups and downs is truly amazing. Marie will always be remembered as a bright light in this community. She fought so hard and her positivity got her through each day. We will always remember you Marie. 04.27.1966 – 08.29.2022.
Meet Polly
She shares her experience with gastrectomy and mastectomy. Her preperations for her surgeries have helped her tremendously with her recoveries.
Meet Ilana
She had a few bumps in the beginning of her journey but was able to overcome them and is now living a healthy life. She shares with us important details about dumping syndrome and the need for increased protein.
Meet Karen
She shares her experience with gastrectomy and mastectomy. Karen is an inspiration to many. Having had both a mastectomy and gastrectomy she is currently training for a half marathon!
Meet Emily
After finding out her family carried the CDH1 genetic mutation, the decision to have a gastrectomy was a no brainer for her as a young mother.
Meet Virginia
She shares with us her CDH1 genetic mutation diagnosis and her decision to go forward with gastrectomy and double mastectomy. After witnessing her father pass from cancer, Virginia knew it was the right decision to make.
Meet Courtney
She shares her experience with her prophylactic gastrectomy. After lots of struggle with diet, pain, and multiple surgeries, she is now living a healthy beautiful life.
Meet Alek
After losing over 100lbs and then discovering he had stage 1 signet cell carcinoma in his stomach, he made the leap of faith to have his stomach removed. His active and healthy lifestyle, positive attitude, and sense of humor tremendously helped his recovery and he is now healthier than ever.
Meet Demi
Meet Demi…She Just recently celebrated her 9 year gastrectomy anniversary. As a mother of 3 beautiful children, we learn how she was able to conceive and give
birth without having a stomach. This is a fabulous interview for those of you seahorses hoping to have kids. You are a ray of hope and positivity!
Meet Melissa
Today we kicked off the new year with a fabulous talk with Melissa about her 5 year recovery from total gastrectomy. After losing her mother and aunt to stomach cancer, Melissa knew that removing her stomach was the decision she needed to make in order to save her life. Thank you for opening up and sharing your experience with us. You are incredible!
Meet Amanda
After seeing a large portion of her family developing breast and gastric cancers, she visited a genetic counselor and discovered she carried the genetic mutation CDH1.
Meet Jamaal
Jamaal has been diagnosed with stage 4 signet ring cell carcinoma -HDGC- and is currently fighting with everything he has to beat his diagnosis.
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The DLH Foundation supports the Charter of Save Our Stomachs with time and financial investments. The grassroots economic support we can provide here has a significant and meaningful impact on the futures of our CDH1 community. As a parent, you can imagine how difficult it is for us knowing we passed this gene on to our children, and we’re doing everything we can to save their stomachs and avoid a cancer diagnosis. We need and ask for your help to fund our initiative.
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