CDH1 - Gene Mutation - Our Story - Sisters

[@neekachristopher8046]

I absolutely love your videos! I just found out that I also have the CDH1 mutation and am having the surgeries! There’s not a ton of journal type videos like yours and I’m literally binge watching them 😂❤. Thank you for sharing your story❤

[@karenpiotrowski]

loved hearing your story and thanks for joining the FB page for CDH1 mutations carriers WITHOUT a family history ...that my sister and I created

[@BeetinGenes]

Thank you for creating this page... your work is very appreciated!! I am so happy to be apart of a group with the same diagnosis as us.. We are not alone and it feels like were going to be OK.

[@joscherp5779]

Hello team CDH1. Does this FB group still exist? I am keen to make contact with people with similar diagnosis to myself and family members.

[@ssmith9278]

Is this still a FB group I cant find it?

[@kimelvin5144]

Hi I’m from New Zealand and finding the CDH1 gene was something our family found with Professor Parry Guilford of Otago. It was a world first in 1996 and was entered in the British Medical Journal. Our family for many years had been dying a gruesome death some as young as 12 years. We’ve just had what we call Gene Aversary for the celebration for the ground breaking news, many of our family are still here today because of the Total Gastrectomy. All my 4 children have the gene because I do. My son diagnosed with cancer at 18 stomach now gone but he is alive today. His cousins diagnosed earlier age than him, one was 14, and still here today after stomach removal. At the moment stomach removal is the option if diagnosed with stomach cancer. I’m vegan and I choose to be good to my body so it does the same for me. Look up when, where and who discovered the CDH1 mutation gene.

[@BeetinGenes]

Hi Kim. Thank you for your message. Yes. We have learned a lot since the making of this video. I, Polly, have since had my stomach removed. We actually interviewed Parry. I will leave his interview below. We know him pretty well. It’s an ugly gene but so grateful that people like Parry are working on better treatments for our children. Sending our best to you. Family through our genes. ❤️Ep.18 Parry Guilford, Jamis, and Isaia... Discoverer of CDH1 Genetic Mutation. Gastrectomy kzbin.info/www/bejne/p3yspZWmfpKCr7M

[@kimelvin5144]

@@BeetinGenes thank you for sharing the link with Parry, James and Isaiah. My maiden name is McLeod and my father Rangimarie McLeod was working along side Parry. One of Parry’s sons is named after my dad. So I’m so glad that you interviewed Parry and the brothers, they look so healthy. My son was 68kgs before op then dropped to 48kgs after nearly 3 years he’s finally putting weight back on and now 60kgs lol he really likes his food now. It’s taken a while but getting there. Polly I hope that you are doing well and it’s so good you mentally prepared yourself where as here the young ones are not mentally prepared and depression sets in. So I’ve shared this link with my family hope that’s all good lol. You both have a wonderful day and just know what you are doing is amazingly strong. As we say here in New Zealand “Kia Kaha Kia kōrua” you both be strong.

[@gloriamorrison1781]

Loved this girls! Gave me lots to think about!!! 💖

[@annoyinbegga2921]

Wow. I had a very similar situation with CDH1 with no examples of cancer in the family. I went to NIH and had my stomach out almost a year ago. Im thinking of making a youtube testimonial also. The anxiety of living with the gene was so difficult, it was almost as tough as life post gastrectomy. No regrets. I can't wait to meet my grandkids.

[@BeetinGenes]

Annoyin Begga you should totally make a KZbin. Would love to hear your story. Glad to hear you are doing well post surgery. We have yet to have our surgery. We are involved in a study hoping to help the dr’s find better ways of detection. ❤️

[@Chronicallythrivingwithshadae]

Here because im 24 and my grandma just passed of signet ring cell. Shes the first in our family to have this but did also have breast cancer at 48. My aunt got breast cancer at 39, 3 years ago before my grandmas diagnosis as well. It was odd to me because she is BRCA negative, as am I so that is scary. I started doing research on the cancer & thats when I found its a cdh1 rare cancer. I have a genetic testing consult next week for this mutation, Im horrified. I told the rest of my family but they rolled their eyes and said they would never get their stomach removed anyway, if I am positive I am confident their thoughts will change.

[@gregnickolson]

Way to get the word out.

[@mairinmazzieshearysmith6642]

I don’t agree with a lot of your choices but everyone’s different on their journey. I hope your choices work for you and your life

[@mairinmazzieshearysmith6642]

Also I don’t think you understand the math behind passing on the mutation.

[@BeetinGenes]

Hi Marian. I respect your opinion as we are all entitled to one. I have since had a prophylactic mastectomy with complications. Looking to have a fourth surgery. I have some regrets regarding this choice but am ultimately happy with this decision I made. As for my stomach, I’m being closely followed by the NIH. I go every 6 months where 100 biopsies are taken from my stomach. If my Dr feels it is time for me to move forward with gastrectomy I will do so. For now he is comfortable with me (as am I) continuing this route. The risk assessment has changed since this video was made. It seems my risk has decreased from 86% down to 37%. We are all on our own journey in this life. We are to do what is best for each of us. My goal is to find better pathways of treatment for my children. I feel I am safely participating in this discovery. Thank you for your well wishes and I too wish you all the best. ❤️Polly

[@piercefamily1899]

I have cdh1. No known history of gastric cancer. I will likely keep getting endoscopys.

[@BeetinGenes]

Pierce Family We joined the gastric cancer study at the NIH in Maryland. Just got back on Saturday and awaiting results from our gastric mapping. They were so wonderful! And the study pays for all of the testing and travel. Keeping our fingers crossed! 🤞🏻🤞🏻I highly recommend you reach out to them. Thoughts and prayers going out to you and your family! ❤️❤️❤️

[@piercefamily1899]

Beetin Genes thanks. I have a specialist at Emory I’m seeing soon. Just have to do our best to make every day count for Christ. Keep us updated.

[@BeetinGenes]

Pierce Family Yes! Agreed! Living each day to its fullest is key! God bless you! 🙏🏻❤️

[@UFRooster]

My mother and I both have the mutation, my sister does not. Mother just had her stomach removed because she had lobular breast cancer last year. Her stomach biopsy came back negative. The doctor is insistent I have mine removed even without doing further scans or testing. My mother’s recovery has been tumultuous to say the least. If they wouldn’t remove the pyloric or cardiac sphincters I might be more inclined to have it done but since there would be no stop sign from my face hole to my rear exit, I’ll stick with testing.

[@BeetinGenes]

I’m so sorry to hear of your moms troubles with this mutation and surgery. Unfortunately they can not keep the sphincters as they too are prone to the hdgc. Did your mother happen to get her pathology back from gastrectomy? Where did she have her surgery? Do you have a family history of gastric cancer? I urge you to listen to our recent interviews of fellow CDH1 mutation carriers. Sending our best to you and your mom! ❤️❤️❤️

[@UFRooster]

@@BeetinGenes pathology of her stomach fortunately showed no cancer. She had it done Jan 12th at Piedmont Hospital Downtown Atlanta. Dr. Weitman No family history of Gastric cancer that we know. Many 80&90 year olds, lung cancer from smoking and mental illness but no real cancer on her side. I did watch your recent interview with the poor woman who had so many issues. I forwarded it to her and it gave her hope and some new ideas to try and questions to ask.

[@BeetinGenes]

@@UFRooster It seems it takes most about a year to fully adjust after surgery. I trust your mom will too. ❤️

[@piercefamily1899]

One other question. What in life should I be looking for that cues me in that things are getting worse?

[@BeetinGenes]

We are no experts but have been told that when you have symptoms it’s too late. 😩