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Hereditary Diffuse Gastric Cancer (HDGC)

Posted by Karen Chelcun Schreiber On January - 29 - 2010

Gastric cancer is the second most common cause of cancer-related death in the world.

The American Cancer Society estimated that 21,500 new cases of stomach (gastric) cancer would be diagnosed in the United States in 2008.1 Because gastric cancer is difficult to diagnose, it is often discovered in patients at a late stage with a poor prognosis. The treatment for gastric cancer is surgery and chemotherapy;2 however, the overall 5-year survival rate is low, at 24.3%.1

It is estimated that 1-3% of cases of gastric cancer are caused by Hereditary Diffuse Gastric Cancer.2 Hereditary diffuse gastric cancer (HDGC) is an inherited cancer syndrome that leads to an increased risk for both diffuse gastric cancer and lobular breast cancer in women. Patients who inherit the genetic mutation for HDGC are at high risk for developing gastric cancer at a young age.3 Read the rest of this entry »

Education, Front, Genetics, HDGC, Hereditary Diffuse Gastric Cancer, Lobular Breast Cancer

“Top Medical Advances of the Decade” include mapping the human genome; CDH1 gene mutation is example

Posted by Karen Chelcun Schreiber On December - 30 - 2009

Watch the video about Mapping the Human Genome and Stomach Cancer.

“Good Morning America” considers the discovery of genetic markers such as the one causing HDGC to be one of the top medical advances of the decade. Stomach cancer is mentioned specifically in this video from December 29, 2009 featuring Dr. Tim Johnson’s descriptions of medical breakthroughs. We are confident that the efforts of all of us impacted by HDGC and other diffuse gastric cancers, have already resulted in this national coverage: one small step in educating the world, on our journey to prevent gastric cancer and ultimately to find a cure!

Education, Front, Genetics, HDGC, Hereditary Diffuse Gastric Cancer

HDGC Research: In pursuit of stomach cancer prevention

Posted by Karen Chelcun Schreiber On November - 11 - 2009

A  prestigious James Cook Fellowship has been awarded to researcher Parry Guilford, University of Otazo, New Zealand, to pursue innovative research aimed at reversing or preventing the very early stages of stomach cancer.

Read Parry Guilford’s personal post detailing his exciting research plan for HDGC / CDH1 gene research.  His two year fellowship will begin in March, 2010.

 

The University of Otago announces Parry Guilford’s exciting award for  stomach cancer research.

More information about The Royal Society of New Zealand James Cook Research Fellowships.

Front, Genetics, HDGC, Hereditary Diffuse Gastric Cancer, Research

New Zealand Government Research Fellowship: Focus on HDGC and diffuse gastric cancer

Posted by Parry Guilford On November - 11 - 2009

Parry Guilford; Cancer Genetics Laboratory, University of Otago

The James Cook Fellowship provides funding for two years of concentrated research, free of teaching and administrative commitments.  My planned research is built broadly around establishing methods to assess individual risk of developing gastric cancer.  As we all know, CDH1 mutation carriers have a lifetime risk of around 70-80% of developing diffuse gastric cancer, but we have little understanding of an individual’s actual risk at any particular point in time. A better understanding of this would help individual carriers decide what the best time for surgical intervention is.  Read the rest of this entry »

Front, HDGC, Hereditary Diffuse Gastric Cancer, Research

CDH1 gene mutation causes stomach cancer: How is it inherited?

Posted by Karen Chelcun Schreiber On November - 7 - 2009

CDH1 Mutations and Inheritance

By Amy Stettner, MS, CGC
Genetic Counselor
Madison, WI

Our bodies are made up of trillions of tiny cells. We have skin cells, muscle cells, bone cells, stomach cells, etc. Each cell contains a copy of our genetic code. This genetic code is made up of DNA and is packaged into structures called chromosomes. Read the rest of this entry »

Education, Front, Genetics, HDGC, Hereditary Diffuse Gastric Cancer

Great news about the Chelcun Family Fund For Stomach Cancer Research

Posted by Karen Chelcun Schreiber On September - 28 - 2009

The Chelcun Family Fund for Stomach Cancer Research has accomplished much, in a very short time. Our website is a leading resource (if not the leading resource) for information about HDGC and support for HDGC families worldwide. We are writing to bring you up to date on what’s been happening, and to announce a major step forward.

Our website at www.BeStrongHearted.org took off in a way none of us had anticipated. The statistics are astounding: visitors from 81 countries and every state in the United States; thousands of page views; families across the globe sharing their stories and connecting with others for support and information.

We’ve sparked a research study that will be led by Dr. Gregory Lauwers, a pathologist at Massachusetts General Hospital. Details about the study will be announced soon on our website. Read the rest of this entry »

Education, Families, Front, Fundraising, Get Involved, HDGC, Hereditary Diffuse Gastric Cancer

HDGC and the Increased Risk of Lobular Breast Cancer

Posted by Johanna Chelcun On August - 25 - 2009

by Johanna Chelcun, MHS, PA-C

 

Scientific Background

The role of the E-cadherin protein affected by CDH1 gene mutations is adhesion of adjacent cells in certain tissues of the body.   In patients with a CDH1 gene mutation, the loss of E-cadherin is thought to lead to invasive tumors, most often in the lining of the stomach.  However, a form of breast cancer called lobular breast cancer has also been associated with the CDH1 gene mutation and hereditary diffuse gastric cancer.

Lobular breast cancer caused by CDH1 mutations cause cancerous cells to be scattered throughout the breast tissue, making the cancer difficult to diagnose (much like hereditary diffuse gastric cancer).  Additionally, the same type of cancer cells, called signet ring cells, are found in both lobular breast cancer and diffuse gastric cancers.  This helps to solidify a relationship between the CDH1 gene mutation and an increased risk of both diffuse gastric cancer and lobular breast cancer.  To date, lobular breast cancer is the only cancer besides gastric that is known to occur at increased rates in families affected by a CDH1 gene mutation. Read the rest of this entry »

Education, Front, Genetics, HDGC, Hereditary Diffuse Gastric Cancer, Lobular Breast Cancer

Know Your Family History: The importance of communication and record-keeping

Posted by Johanna Chelcun On August - 12 - 2009

By Johanna Chelcun, MHS, PA-C

 

As we now know, hereditary diffuse gastric cancer is a rare inherited syndrome that is caused by a genetic mutation in the CDH1 gene. This gene has the possibility of being passed from generation to generation, and the effects of the inheritance can be devastating. Looking beyond HDGC, we notice that the new wave of medicine is focused on genetic mapping, counseling, and testing - searching for patterns of heart disease, autism, dementia, and all types of cancer, to name a few.

 

Often times, primary care physicians simply don’t have the time to ascertain and document a thorough family history during a brief appointment. They are often allotted only 15-minute intervals to discuss your own medical history, review your medication list, talk about any current issues or concerns, perform a physical exam, develop a management plan, prescribe any new medications, and update your medical record (whew!). The time spent on family history is minimal, and sometimes even missed altogether.

 

Read the rest of this entry »

Education, Families, Front, HDGC, Hereditary Diffuse Gastric Cancer

Facts about Stomach Cancer and Stomach Cancer Research Funding

Posted by Johanna Chelcun On June - 30 - 2009

By Johanna Chelcun, PA-C

 

Did you know…

 

…that Hereditary Diffuse Gastric Cancer (HDGC) is an inherited cancer syndrome that leads to an increased risk for diffuse gastric cancer (67-83% risk by age 80) and lobular breast cancer (20-40% risk for women by age 80.)

 

…that the American Cancer Society estimated that one million people worldwide would be diagnosed with stomach cancer in the year 2007, and that 800,000 would die from the disease? Read the rest of this entry »

Education, Front, Fundraising, Get Involved, HDGC, Hereditary Diffuse Gastric Cancer, Research

Hereditary Diffuse Gastric Cancer: British Columbia Cancer Agency Research Update June 2009

Posted by Karen Chelcun Schreiber On June - 22 - 2009

Current Research Projects of the Hereditary Diffuse Gastric Cancer Research Team at the British Columbia Cancer Agency.

David Huntsman, Pardeep Kaurah
 

Over the last 10 years, we have learnt a lot about hereditary diffuse gastric cancer (HDGC). However, there are still many critical knowledge deficits which need to be addressed to improve the cancer control of families with known CDH1 mutations and to inform the care of families with strong histories of gastric cancer of whom known mutations have been identified.

 

Our research team is both collaborating with other members of the International Gastric Cancer Linkage Consortium (IGCLC) to develop a more accurate understanding of the cancer risks associated with carrying CDH1 mutations, and is performing research locally that should help our global research community move forward.

 

Studies we are actively engaged in include: Read the rest of this entry »

Front, HDGC, Hereditary Diffuse Gastric Cancer, Research

TV New Zealand Close Up: The Kiwis who inspired a Grey’s plot

Posted by Karen Chelcun Schreiber On June - 14 - 2009

View an uplifting and interesting Close Up news broadcast about Hereditary Diffuse Gastric Cancer (HDGC) on TV New Zealand featuring Parry Guilford, the scientist who first identified HDGC and the CDH1 gene mutation that causes HDGC.  His discovery, only eleven years new, has been saving so many lives, including in the Chelcun family and many other families worldwide.  The Close Up includes interviews with the original families in whom HDGC was first identified.  We must find ways to fund the promising research that will ultimately lead to the prevention of this particular cancer as well as other related cancers.

Families, Fundraising, Genetics, HDGC, Hereditary Diffuse Gastric Cancer, News, Research

Hereditary Diffuse Gastric Cancer (HDGC): A Resource for You

Posted by Karen Chelcun Schreiber On June - 13 - 2009

HDGC...Now What?

Be sure to visit HDGC…Now What?

 

You, or someone close to you has been diagnosed with HDGC.  Now what?  The search is on, for information, for support, for encouragement.

  
We are committed to developing this network, a valuable source of credible and useful information.  Join our community of support for all of those touched by HDGC or other types of stomach cancer.  Your participation can be as little or as much as you desire.  You decide. Read the rest of this entry »

Education, Families, Fundraising, Gastrectomy, General, Genetics, Get Involved, HDGC, Hereditary Diffuse Gastric Cancer, Lobular Breast Cancer, Mind, Body, Spirit, News, Nutrition, Pregnancy, Research
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    • Karen Chelcun Schreiber wrote on Cathy O’s wire:   1 hour, 42 minutes ago

      I’m thinking of you Cathy and sending positive energy your way. Good luck to you! Keep writing, let us know how you are progressing. Lots of questions come up after TG - post them! We’re all out here, ready to help in any way we can.

    • Cathy O wrote on their own wire:   5 hours, 25 minutes ago

      Tomorrow is the big G day. I have been wined and dined, and tead and lunched. Haven’t gained any significant weight though, food in equals food out for me.
      I am pretty calm about the surgery. Thank you to this site for all of the information. There IS life after gastrectomy and [...]

    • Karen Chelcun Schreiber wrote a new blog post: A story of hope: Elizabeth Lambert shares her family story   12 hours, 30 minutes ago

      Elizabeth Lambert, a teacher and a member of the Board of Directors of No Stomach For Cancer, Inc., is dedicated to raising awareness and educating the public about diffuse stomach cancer.  Like many others, her family has been affected by a hereditary form of stomach cancer. 

      The Chronicle aired a program about genetics on January 22, [...]

    • Tammy Ayson wrote on Cecily Wilson Guiney’s wire:   2 days, 3 hours ago

      Thank you so much for your message Cecily. I think it is just amazing that we can ‘chat’ to others just like ourselves, even if we are oceans apart. I still feel amazed at how well my recovery has gone thus far and it is just lovely to read other personal stories that reassure me [...]

    • Tammy Ayson and Cecily Wilson Guiney are now friends   2 days, 3 hours ago

    • Chris and Cecily Wilson Guiney are now friends   4 days, 11 hours ago

    • Chris updated the “Bio” information on their profile   4 days, 16 hours ago

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