Ep.14 Kelle... CDH1 Genetic Mutation. Gastrectomy & Mastectomy

[@yvettebarnett5085]

Thank you soo much for sharing your journey! My condolences to you and your family. I appreciate the knowledge you share to help others. As a healthcare provider I understand how difficult it is to provide care for your family it’s soo difficult. My son has a genetic disorder and trach from birth he’s 2 years old. I get it … I have said, “I wish I didn’t know soo much!” It makes things that much harder. 🙏🏽 I was just diagnosed with breast Lobular breast cancer and watching others journey gives me so much strength. Your sister sounds amazing, I smiled as you spoke about her. Sending you lots of love and prayers. 🙏🏽❤️

[@robbar42]

hallo! i found out today that i have a mutation on the CDH1 gene. i detected it cause i am 45 male and developed a lobular breast cancer. i am now being treated for it ,( on chemo right now) i thought it was the BRCA2 mutation...

[@gloriamorrison1781]

I'm so sorry. I have been living with the knowledge of CDH1 for about 5 years now. All three of my grown children have the gene. My oldest daughter is scheduled to get her TG in May. We do not know about 5 of my grandchildren. I am suffering with tremendous anxiety and my husband is dying of GIST stomach cancer. Those things and our world situation is literally killing me. Knowing we have a family of CDH1 survivors who are living beautiful lives helps tremendously! God bless your journey and know our prayers are lifting you up. 💖

[@BeetinGenes]

Wow! I am so so sorry to hear about your new findings and diagnosis. I didn't even know men could develop lobular. Do you have a family history? Has anyone else in your family tested for CDH1?

[@robbar42]

​@@BeetinGenes my mother had it in 1999, and made through it (she's still alive) but no one ever developed stomach cancer in my family. They will be tested shortly. They live in Italy but I moved to Spain long time ago (I am in Barcelona now), the language barrier is not overwhelming (doctors in Italy can read spanish) but it is not the same system and before they process the information it can take time..I spotted a nodule on my left breast in 2018 and they ran a mamogram and ecography and so nothing but "fibres" and goven the fact that i am a male they gave little importance. Six months ago my nipple started to go inward and they did a biopsy which confirmed a hormonal cancer. They removed 5 lymphnodes when I had a mastectomy and found that one had some tumor cells in it that's why I am undergoing chemo....meanwhile they tested me for ten different genes (as a male woth lobular breast cancer is very rare) and the CDH1 came out positive- I'll have my first gastroscopy in June, fingers crossed....

[@robbar42]

@@gloriamorrison1781 thanks so much, any support , even on the form of prayers, helps! I can imagine the anxiety you are going through, my brother has suffered a stage 4 melanoma (skin cancer) when he was 45 (my age now) I suspect there's a gene problem in the family although CDH1 has nothing to see with skin cancers...It could be a coincidence but... I am sorry for your husband and hope all the best for your children, it doesn't mean that we have a 100% chance of getting a cancer...luckily the one in my breast was palpable and that rang the alarm. I subscribed to this channel because it is really giving me strenght and mental support, there's no much information out there. When I got the results the doctor told me "we are going to learn form you"