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Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research

Posted by Karen Chelcun Schreiber On July - 20 - 2010

An article published recently in the Journal of Medical Genetics outlines new recommendations for management of patients and families with Hereditary Diffuse Gastric Cancer, based on a workshop of the International Gastric Cancer Linkage Consortium (IGCLC) held in late 2008.  The workshop, convened in Cambridge, UK, included expert geneticists, gastroenterologists, oncologists, surgeons, and pathologists from nine countries, and discussion topics included genetic counselling and testing, surveillance endoscopy, prophylactic gastrectomy, and review of pathology specimens.

Some of the outcomes of the IGCLC workshop include: Read the rest of this entry »

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

The Doctors TV: Desperate To Save A Life

Posted by Karen Chelcun Schreiber On March - 15 - 2010

The Doctors TV aired a program on Monday, February 1 titled Desperate To Save A Life. It includes a segment about Hereditary Diffuse Gastric Cancer (HDGC).  If only one at risk family is identified, if only one life saved …

View the two part segment:

Desperate To Save A Life, Part One

Desperate To Save A Life, Part Two

Front

A story of hope: Elizabeth Lambert shares her family story

Posted by Karen Chelcun Schreiber On March - 11 - 2010

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. 

Elizabeth’s family was featured in a January 22, 2010 episode of Chronicle about genetics which aired on WCVB Boston Channel 5 on January 22, 2010.  View the Walsh Family Stomach Cancer video on You Tube.

A story of hope: Family has stomachs removed to fight cancer, an article written by Aaron Nicodemus, appeared in the Worcester Telegram and Gazette, Worcester, MA on February 2, 2010.

Families, Genetics, News

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

Surviving Stomach Cancer

Posted by Karen Chelcun Schreiber On January - 13 - 2010

earlyshowWORKING TO RAISE AWARENESS CHELCUN FAMILY MEMBERS APPEAR IN CBS SEGMENT ABOUT HDGC

The Chelcun family was featured in a CBS video segment with the goal of raising awareness of Hereditary Diffuse Gastric Cancer syndrome (HDGC).  While it appears to be a story about the Chelcun family, the underlying story is that of families all throughout the world. Change the family name, the family size, the individuals, the city, the country, but the story remains the same.

You may view the video, titled Surviving Stomach Cancer, currently available on You Tube.

Awareness is critical. Lives can be saved. Be an educator by sharing this with others.

Front, News

“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

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

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 (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

Pay Attention to the Pathologist Behind the Curtain

Posted by Karen Chelcun Schreiber On June - 10 - 2009

“You have doctors you’ve never met, but who are absolutely essential to your care. Pathologists are in the background, but are key to diagnosis, treatment and care,” says Kent B. Lewandrowski, MD, associate chief of Pathology and director of clinical services for the Pathology Department at Massachusetts General Hospital.

I personally discovered the critical nature of pathology in the treatment of HDGC while researching the topic after testing positive for the CDH1 gene mutation that causes HDGC. While interviewing a prospective surgeon I asked “Who will be analyzing my stomach, who is the pathologist?” This is how I first learned of Dr. Gregory Lauwers, his expertise with gastric cancer, his experience with HDGC patients, and more about the extensive and time consuming analysis that would be performed on my stomach following its removal. I met with Dr. Lauwers, approximately sixteen days following my surgery, to get my pathology results first hand and learn more about the process.  My stomach remains, in Boston, in wax blocks, in 170 sections, in a drawer, for all of eternity.  Read more about the importance of surgical pathology.

 

Pay Attention to the Pathologist Behind the Curtain, by Cathryn Delude

Massachusetts General Hospital, Cancer Center
Synergy, Winter/Spring 2009

Related Article:   Choosing a Surgeon: Ten questions to ask

Education, Front, Gastrectomy, HDGC, Hereditary Diffuse Gastric Cancer
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    • Karen Chelcun Schreiber wrote a new blog post: Scientific Advisory Board   3 days, 21 hours ago

      Scientific Advisory Board members are highly accomplished professionals with medical and/or research background, who provide expert and comprehensive perspectives as well as guidance to No Stomach For Cancer, Inc. with regard to technical, medical, and research related topics. The Board provides knowledge and support that are critical in furthering our Mission.

      Daniel C. Chung, MD
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    • Nina healey wrote on the wire of the group Lobular Breast Cancer   1 week, 1 day ago

      I am new to this group. I am actually a cousin of Lorraine Ennis. In March 2007, I was diagnosed with Invasive Lobular Carcinoma in my right breast. I had a mastectomy in March, during which the dr checked the lymph nodes by removing the main node and checked it while I [...]

    • Nina healey joined the group Lobular Breast Cancer   1 week, 1 day ago

    • Gretchen Borzi wrote on the wire of the group Lobular Breast Cancer   3 weeks, 2 days ago

      Lorraine and Cathy, you’re stories are inspiring. I wish you both the best of luck with your surgeries and recovery. Right now, it’s hard for me to imagine being in your shoes, but I will most likely be there at some point. Thanks for sharing.