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

 

UPDATE: Dec 8, 2018

Hey Everyone,

When I first started blogging, there were only a handful of young bloggers out there blogging about this “CDH1” mutation and contemplating or living without a stomach.   This was back in 2013.   When I first found out I was positive – like many 20 year olds at that time – I searched google for anyone else out there with this mutation.   Social media hadn’t quite caught up with CDH1+ and there weren’t any support groups on Facebook.

Initially, I decided to start my blog as a way to keep my family members up to date regarding what I was going through and why I was going to remove my stomach. This quickly spread to them asking if they could share my blog with other members of the community.  Eventually, I decided to go public to help others with their decision making progress and to spread awareness about hereditary diffuse gastric cancer syndrome.

Currently, it is a lot easier to find bloggers who are blogging during their contemplation phase as well as early after having their total gastrectomies (within the first year or two).  However, there are few of us who have continued to blog through the years and I believe it is because we all doing so well – we are too busy to blog (myself included)!

At this point, my goal continues to provide a dialogue regarding living with the CDH1+ mutation and the stomachless life after removal at a young age.

Thank you all for continuing to follow my journey – it’s been a great 5 years blogging and counting!

 

 

Advertisements

8 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.

  3. Hi Rachel! I just found your blog today and I have been reading on your gastrectomy experience to learn more about what I may be going through in the near future. I was diagnosed with FAP a few years ago, and in 2016, I had a total colectomy. That same year, I was told that my whole stomach was covered in fundic gland polyps. My doctors and I decided to keep close surveillance but the pathology report has changed and my diagnosis has become more aggressivesince then. We are now discussing a full gastrectomy as a preventive measure.
    Your blog is bringing me hope and reassurance. As you can imagine, I’m sad, scared, stressed and anxious just thinking about going through another surgery to remove another part of my digestive tract. While I know people have one procedure or the other, I yet have to find someone who has had both; the stomach and colon removed. If you know of any other blogs or information out there in the web that I may not have come across yet, I would appreciate you sending it my way! 🙂
    Thanks for sharing to this date and for helping others with your personal experience.
    Carol

    • Hey Carol, I am sorry to hear about your health issues but am happy my blog has helped you! You have already been through a lot and you have got this! I put a link on my blog for other resources and listed a few other resources I use and follow. They are under a separate tab. Shoot me an email if you need anymore information, I would love to help where I can.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s