About Me

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’.

On December 5th, 2013 I had a solid 5 year plan.  On December 6th, everything changed. Missing Cytosine…frameshift mutation…risk of hereditary diffuse gastric cancer.

This is my blog and my story about living with the CDH1 gene mutation

4 thoughts on “About Me

  1. so glad i found your blog..my husband is beung tested for cdh1 as we just recently got a diagnosis of hdgc which was a complete shock..we have a 8 y old girl and 5 year old boy.they said they wont test until shes 15..how do i tell a teenager? did you know about the condition for a while? good luck with it allx

    • Hello Jo,

      I am happy that you found my blog, I started it to connect to others in the same boat. I found reading other people’s blog very helpful and decided I should start a blog to help others as well.

      I am sorry to hear about the recent diagnosis of HDGC in your family 😦 I have known about the possibility of carrying this gene for the past 4 years. I am now 29 years old. My mom told my brother and I in 2009 when she tested positive for the gene and had made the decision to have her prophylactic gastrectomy. Long story short, my mom did not know about the gene mutation in our family until 2009 (although her father passed away when he was 30 of stomach cancer).

      I don’t have kids myself at this point in time so I’m not sure how I would go about telling my kids about the gene mutation. However, I do know when my mother told us about the possibility of carrying the gene, I was okay. The idea of actually having the gene didn’t really pull any weight until I was actually diagnosed with it.

      Have you checked out the ‘no stomach for cancer’ webpage and forum? There are many other people out there with affected by CDH1 and HDGC.

  2. Hi Rachel,

    I noticed that you started following my blog (Task Force Frank)…so I checked out yours. Wow! I really enjoyed reading your journey, you are very brave! As our diagnosis is still so ‘new’, I am still in full research mode, and am slowly becoming an expert on something I wish I didn’t have to care about. With a teenaged son, one of the things I am worried about is HDGC and CDH1. My husband’s specific pathology of his gastric cancer has not been confirmed yet. We should know more in the next week or so.

    Good luck to you!

    Sandi

    • Hello Sandi,
      Thanks for the message. I frequently scan wordpress to find others who are in a similar boat and I stumbled upon your blog. I wish the best for Frank, and your family. I will be following your journey. Fingers crossed it isn’t CDH1 related but if it is…your son will have choices which is a good thing.

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