Thursday, February 7, 2013

Ready to Share - about HDGC Cancer............

How can something so beautiful be so deadly?
In early December, I had a genetics test and found out that I tested positive for CDH1 which is a gene mutation that causes HDGC - Hereditary Diffuse Gastric Cancer.  The average age of onset of gastric cancer in HDGC is 38 years old.  The estimated lifetime risk of developing gastric cancer by age 80 is 84% for women and a 50% lifetime chance of getting breast cancer.  It is a very rare nasty cancer syndrome that is silent. Microscopic Signet Ring Cells weave in between the lining and mucosa of the stomach and it is nearly impossible to detect via Endoscopy, MRI, etc. It is A-symptomatic (no real outward symptoms) until it is late stage and usually untreatable or terminal. It took my father's life at age 46 when I was in high school and just this last July it claimed his sister too. After looking into family history - we found that it took my Grandfather and Great Grandfather at young ages as well.
I felt like I had been handed a death sentence.  I watched this cancer's evil handy work first hand in watching the passing of both my father and my aunt. I vowed with the news of my gene mutation diagnosis that I would be a survivor and not another statistic. Because this type of cancer is so difficult to detect at and early stage and surveillance is not reliable, the medical recommendation is a Total Gastrectomy (stomach removal). Yes, I know! Your eyes just bulged out of your head and you are probably thinking things like: Can you live without a stomach? Isn't that a rather DRASTIC preventative measure!?? There must be a better way! I know, I know - I had all the same thoughts and reactions too. 
Thanks to the support of my cousins (that tested negative for the mutation by the grace of God) family, and a fantastic organization called  No Stomach For Cancer, I have come to peace with my diagnosis. Like others in the world with this genetic mutation that have not already succumbed to this horrid cancer, I will undergo a Total Gastrectomy in a few weeks
 on February 22 2013
 at Duke University Cancer Center in North Carolina.
I feel so blessed to have this awareness and a chance to beat this cancer!
Once again I am reminded how fragile and precious life is.
Kia Kaha
Be Strong in the face of challenge


  1. I'm stunned, Lu. Keeping from crying because I want to join you in your positive attitude. I've got an empty nest now--not doing much other than writing--please, please let me know what I can do to support you.

    Love you very much--am in prayer for you and your family.


  2. Oh my dear, I am stunned too. I am glad you are going to Duke. It is a great hospital.
    I admire your positive attitude. That will be half the battle during recovery.
    My prayers and well wishes are headed your way.

  3. Dear Lurena,

    I am so grateful that you now have the knowledge, and the power, and the strength - to be proactive and to insure that your live will not be lost to this devastating disease.

    Knowledge gives you power - you have that...and sharing gives you are already a strong woman, and you are not alone in this.

    So great to see the support you have, and you know I'm always here for you - or anyone for that matter who has questions, concerns, or wants to learn more.

    I'll be watching for updates, sending lots of love to you, and yes - Kia Kaha!


  4. Oh my! I am sending many prayers to you and will be with you in thought when you go thru your surgery. Please come back in and keep us up to date. Good Luck! Kit

  5. Just wanted you to know we are thinking about you.
    The folks in your old home


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