No Stomach for Cancer | Be Strong Hearted

A Network for Gastric Cancer Patients, Survivors and Families

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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 »

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.

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 »

Kia Kaha

Posted by Karen Chelcun Schreiber On March - 21 - 2009

By Ryan Gay
Kernersville News, NC
March 2009
lisa-foster-england

The stomach is an organ many people take for granted, not really thinking about how much it helps the body. Except in instances of allergies or diets we don’t really have to concern ourselves with what we eat or when we eat.

There is simply a familiar pang in our abdomen that tells us our body needs to eat.

For one local woman, keeping her body fueled is not that easy.

Due to a genetic mutation that caused two stomach cancers, Lisa Foster England had to have her stomach removed.

Just over a decade ago, a scientist in New Zealand was studying an aboriginal people known as the Maori and discovered a mutation that greatly increases the risk of a deadly stomach cancer that is hard to detect.

The official name of the gene is cadherin 1, type 1, E-cadherin (epithelial), more commonly known as CDH1. Read the rest of this entry »

Erin’s Gift Family Forum Notice

Posted by Karen Chelcun Schreiber On March - 12 - 2009

Notice from Erin’s Gift regarding a Family Forum in Canada:

Add your name to the list of parties interested in attending a HDGC Family Forum. Plans are tentatively in the works for a forum in Vancouver, British Columbia, Canada for families affected by HDGC to be held within the next 3-5 years. The forum will include guest speakers such as Dr. David Huntsman. Please add your name to the contact list if you wish to receive further information as it develops.
March 2009

No Stomach For Food - Or Cancer

Posted by Karen Chelcun Schreiber On March - 8 - 2009

By David Wahlberg
Wisconsin State Journal
March 2009

Karen and Sons

She never gets hungry. Regular meals make her sick. She can’t eat and drink at the same time.

Karen Chelcun Schreiber has no stomach.

It’s not that her stomach is mostly bypassed like after weight-loss surgery. She has no stomach at all. She had the bean-shaped organ removed last summer.

Read the article in its entirety  . . .  No Stomach For Food - Or Cancer

Going Under the Knife to Head Off Cancer

Posted by Karen Chelcun Schreiber On March - 2 - 2009

By Radha Chitale
ABC News Medical Unit
March 2009

brian-greg

Prophylactic Surgery One Option for Those at Risk of Cancer

 

Few wouldn’t balk at the idea of prophylactic surgery — the removal a healthy organ or gland that shows no sign of cancer in order to prevent cancer from developing in that organ or gland.

 

Brian Chelcun with his father, Greg, in 2007. Brian had a prophylactic operation to remove his stomach two weeks ago, soon after his father died of stomach cancer on February 8th.

(WCVB)

In other words, prophylactic surgery involves cutting from the body a perfectly fine organ.

Or a ticking time bomb.

Or a perfectly fine organ.

And that is the dilemma facing a segment of the population who, due to family history, genetics or personal medical history, are saddled with a higher risk of cancer than the rest of the population and may have to take drastic steps to prevent a disease that kills over half a million Americans each year.

But Brian Chelcun, 26, never wavered for a moment.

“I was seeing my dad go through the effects of having stage IV stomach cancer,” said Brian, whose father died Feb. 8 of the disease. Chelcun was released from Massachusetts General Hospital in Boston last week after a gastrectomy to remove his stomach.

“Here’s a chance to avoid going through something that is so hard, and difficult to cure,” he said. Read the rest of this entry »

Erin’s Gift

Posted by Karen Chelcun Schreiber On February - 16 - 2009

Erin's Gift, Erin and her Mom“We Have to Stop Burying Our Children”

Saskatchewan, Canada.  The Lawrence Family found out the hard way; they inherited a genetic mutation (CDH1) from their ancestors.  The Sutherland Family has passed down this rare form of stomach cancer.  They have lost two young people to Hereditary Diffuse Gastric Cancer (HDGC).  The youngest member of the Lawrence family had a prophylactic gastrectomy at the age of 18, because he too inherited the CDH1 gene mutation.

They are reaching out to all relatives of the Sutherland Family Tree, trying to inform them of this genetic killer.  By sharing their story Mr. Lawrence hopes to save someone’s life.

Find the full story, which includes a CBC Radio interview series about Erin, Mr. Lawrence’s daughter, this courageous family, and their quest to identify other family members at risk at Erin’s Gift.
February 2009.

Striking first, surgically

Posted by admin On February - 15 - 2009

By Karen Garloch
The Charlotte Observer
February 15, 2009

At dinner recently, Ken Chelcun swallowed a bigger bite of his taco than he should have and suffered a little digestive distress.

“My food went down into my stomach too fast,” he explained to his family.

“But Dad,” said 8-year-old Dane, “you don’t have a stomach.”

It’s true. Read the rest of this entry »

SELF Magazine 2009 Health Handbook

Posted by Karen Chelcun Schreiber On February - 1 - 2009

Healthy days ahead!

Easy, effective ways to make the most of your unique DNA.

The February 2009 issue of Self Magazine includes a section titled 2009 Health Handbook which features information about Genetics and your health.  The handbook is divided into numerous articles on the Self Magazine website.  In the insert ”Family Clues To Live By”, Rachel Wick talks about stomach cancer and the CDH1 gene in her family.  February 2009

self-rachel

When courage is the cure

Posted by admin On October - 25 - 2008

By Stephen Smith
Boston Globe
October 2008
Karen

Her mother died from stomach cancer at the age of 52.
Her brother was stricken with the same disease at 56.
Bad luck or bad genes, Karen Chelcun Schreiber wondered.

A blood test gave her the answer:

She carried an inherited gene that made it likely that someday she, too, would develop a form of cancer that moves with devastating stealth and speed.

So Schreiber, a 50-year-old from Madison, Wis., traveled to Boston last month to have her stomach removed - in the name of prevention - a life-altering measure taken without hesitation by a woman whose determination was forged in the crucible of loss.

She almost certainly is not the last in her family to endure the surgery, the best hope for stopping a rare cancer sewn into her clan’s genes. One of her other brothers has tested positive, too. And one of her sons. And a niece and a nephew, and, perhaps, other relatives yet to be screened. Read the rest of this entry »

Genes, cancer are ties that bind

Posted by Karen Chelcun Schreiber On December - 7 - 2007

aimee-mury
By Judith Graham
Tribune staff reporter

December 2007

 

Five months before she died of a rare form of stomach cancer, Sandra McNamara uncovered a devastating family legacy.

Her illness was closely linked to a genetic mutation. She had it, and that meant her three sisters and their children might have it too.

McNamara picked up the phone and started calling relatives in Chicago, Boston and Denver. You need to know, she told them. This cancer is hereditary. Get tested. Find out if you’re at risk.
Read the rest of this entry »

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