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Karen’s Story

Welcome family and friends. Thank you for joining me as I begin my journey of discovery and treatment for HDGC. Your support means so much to me, as it carries me through this challenging time.

Please sign the Guestbook and use it to send notes or ask questions along the way. I love hearing from you!

Be sure to visit www.BeStrongHearted.org



It was 1982. I was 24. My mom, Elaine, turned 52 that year, not long before we lost her to stomach cancer. She was too young for this to happen. I was too young to lose my mother. It is 27 years later and I still miss her each and every day. I love you Mom. Always have, always will.

We could never have imagined facing the disease in our family again. Now, 26 years later, our entire family is facing what has turned into a cancer legacy. In September 2007 I was 49. My three brothers were 56, 53 and 48. Greg, at age 56, is diagnosed with Stage IV gastric cancer, discovered during emergency surgery. This is shocking and devastating news. I often thought of Mom and her cancer, thinking this could happen to me. I never thought it would happen to my brother. After learning of Greg's diagnosis I hit the internet, researching, reading everything I could find about gastric cancer. I was obsessed. I came upon the Stanford Cancer Center article on Hereditary Diffuse Gastric Cancer (HDGC). I read it numerous times (check out Links for articles). I dismissed it numerous times too, but for whatever reason I kept coming back to it. We all had a gut feeling that the cancer in our family was hereditary, but up until now we were not aware of the existence of a specific type of hereditary gastric cancer. Even though we did not meet the “official” criteria for this hereditary cancer syndrome it was of our own volition to aggressively examine the possibility that this cancer was genetic; our doctors weren’t concerned.

HDGC is a rare form of stomach cancer caused by a mutation in the CDH1 gene. The chance of inheriting the mutation from a parent who has it is 50/50. For those who have the CDH1 gene mutation the cancer risks are astounding. Women who have the mutation have an 83% chance of developing the cancer; for men it is 67%. The cancer is rarely detected until Stage IV, at which point it is incurable. Detection through screening is nearly impossible, even at Stage IV. Also for women there is a 40% increased risk of lobular breast cancer.

Only about 100 families have been identified worldwide with this gene mutation, but new cases continue to appear. Add our family to the growing list. Much to everyone’s surprise and dismay, Greg’s test result came back positive. Four siblings and our eight children and two grandchildren are facing the prospect of premature death with the only recommended treatment option being Prophylactic Total Gastrectomy (preventive total removal of the stomach). My positive test result came in on May 7, 2007. Of the five family members tested so far, all five have tested positive for this gene mutation. Additional family members have yet to be tested.

For women with the additional risk of lobular breast cancer the recommended course of action is not quite as radical. Annual breast mammogram & MRI, two clinical exams each year, and the drug Tamoxifen (taken for five years) as a breast cancer preventive measure appears to be the general recommendation.

To quote my sister Cindy, we are members of an exclusive club to which no one wants to belong. Frankly, the options suck. But, as I always say, "knowledge is power" and I have been given the gift of knowledge that will likely save my life.

I’m excited to get through this challenge and on to my goal of raising awareness as well as funds to advance the already promising research in progress. We need better options for the children & grandchildren of all affected families, and we’re going to get them!

Kia Kaha,

Karen

Latest Journal Update

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WHAT?  One year?  One single year?

My friend Pat wrote to me "I noticed in my calendar that May 7th marks the one year anniversary of your diagnosis, according to my records.  Can it be?  It seems like a year that has lasted for about 5 since you first shared your news.  How does it feel for you?"

I received the news of my positive result for the CDH1 gene mutation over the telephone, 20 minutes before meeting Pat for coffee and a visit on this day, one year ago.

So, how does it feel for me?  Let me think about it.  All of it.  Research, decisions, website, family reunion, website, surgery, website, media coverage, making connections, website, Ken's surgery (& two weeks caring for my nephews), website, two months in Maui, the birth of my granddaughter Addison, the loss of my brother Greg, Brian's surgery, website, back to the health club, new part time job, oh, did I mention the website?  One single year?  No way.  No WAY.

Now that I'm beginning what seems to be a "new year", I need to take a lesson from my brother Greg.  He lived his life.  I mean he really lived his life.  I don't know if it came naturally to him, or if he had to work at it.  I think I'll have to work at it.  I'm going to try to live my life better.  I think I'll be able to do it, carrying Greg's spirit in my heart to help me along the way.

This is my last journal entry on CaringBridge.

Karen