My 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

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Karen Chelcun Schreiber posted a new journal entry.

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 ... Read more

Karen Chelcun Schreiber posted a new journal entry.

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 ... Read more

Rose Evans signed Karen's Guestbook.

Karen, I was very sorry to hear the news about Greg. You and your family are in my prayers. Kia Kaha Read more

Donna Taft signed Karen's Guestbook.

Oh karen, I am so sorry to hear about your brother. You and your family are in my thoughts. His journey through this illness will help all of you stay with us a lot ... Read more

Beth Lambert signed Karen's Guestbook.

Hi Karen, I am so sorry for the loss of your dear brother. For those of us who carry the mutation and have lost a loved one/loved ones and have been given the choice to ... Read more

Connie McNeil signed Karen's Guestbook.

Oh, Karen ~ Saying I am sooooo sorry isn't even close to enough but I don't know what else to say. omg! I've read every post his wife and you have put here; I pray for ... Read more

Lindsey Cherner signed Karen's Guestbook.

Karen, I am so sorry to hear of your loss. My thoughts and prayers are with you. Much love, Lindsey Read more

Patti Kuzniar signed Karen's Guestbook.

Dear Karen, I just heard today. So sorry for your loss. Greg was such a wonderful man, husband, father, brother, and cousin. We didn't realize it went that far recently. ... Read more

Julie Jacobson signed Karen's Guestbook.

Dear Karen- I am so sorry! My thoughts and prayers are with you and your whole family. Sincerely, Julie J Read more

Jen Seeman signed Karen's Guestbook.

Karen, Sorry to hear about your brother passing, that's so sad. Keep supporting one another as I know you will. My heart goes out to you. Jen Read more

Teri Garin signed Karen's Guestbook.

I'm saddened to hear of the loss of your brother...I know there is nothing I can say to make your pain less. I'm hoping my daughter was there to welcome him to heaven ... Read more

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