Kia Kaha

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.

The normal function of the gene is to provide instructions for the creation of a protein called E-cadherin. Cadherins are a group of proteins on the surface of cells that help the cells stick together. Once stuck together they begin to form organized tissues.

Researchers have worked to understand this group of proteins, noting they might act as a tumor suppressor gene, preventing cells from growing and multiplying uncontrollably. When this gene has mutated, it has been identified in people who have an inherited cancer syndrome called Hereditary Diffuse Gastric Cancer (HDGC), which greatly increases developing cancer in the stomach lining that is difficult to find.

The gene is unknown enough that only somewhere between 100 and 150 families worldwide are known carriers. England, who recently married Jeff England, of Walkertown, was first diagnosed with stomach cancer in 1990 at 32-years-old.

“When I was first diagnosed in 1990, I had somewhere between stage 3 and stage 4 stomach cancer. At this point they removed about 82% of my stomach,” England said.

After the diagnosis, England underwent chemotherapy, which dropped her weight to a staggeringly low 72 pounds. Over time, England worked her way back up to a healthy weight and managed to remain free of the cancer for 15 years.

Since then, England has had to receive Vitamin B12 injections monthly, while also monitoring iron levels and battling kidney stones that set in due to dehydration.

“Since I don’t have a stomach I can’t eat and drink at the same time. I also can’t hold enough fluids to keep my body totally hydrated,” England explained.

After 15 years, England began to feel something deep down that made her take charge of her own health.

“In 2005 I just felt something was wrong. I saw my general practitioner, a gastroenterologist and an endocrinologist who all told me I was healthy. But, pardon my pun; I had a gut feeling that something was wrong. I forced them to do an endoscopy just to put my mind at ease,” England said.

The endoscopy picked up a small amount of cancer that didn’t show up in any of the other tests.

“It was decided that we needed to take out the rest of my stomach and by the time they had, there was four hot spots of cancer in my stomach that had not shown up before,” England said.

It wasn’t until England’s oncologist had read an article by Dr. David Huntsman in Canada about a mysterious gene that was virtually unheard of, called CDH1, that England began to receive an explanation for her recurrence of cancer.

“My oncologist read this article and said, ‘Lisa I think this is what you have.’ Doctors around here weren’t familiar with the mutation so I had to send blood samples to the doctor in Canada who told me what I was dealing with,” England explained.

England is one of the lucky few who have managed to survive two diagnoses of stomach cancer.

“I’ve always been a very positive person who enjoys life, but when you are diagnosed with cancer for the first time, your entire view of the world changes. Nothing is trivial anymore and everything is precious. But when I received that second diagnosis, I was knocked to my knees. I really felt like I was finished. Then when I found out I had this mutation and that I might have passed it onto my children, it changed everything,” England said softly her voice showing a fear over her children’s futures.

When England first started having problems, doctors asked her whether or not she had any relatives with stomach cancer problems.

“I didn’t know anyone at the time, but it turned out I had an aunt who had died from stomach cancer. Another aunt had lobular breast cancer, which has also been linked to the CDH1 gene. My mother also ended up having stomach problems about eight years after me and it turns out it was linked,” England explained.

England has utilized the doctors at Duke University Hospital in an attempt to discover more about the gene and how it affects families.

“I’m the only case that Duke has involving the CDH1 gene, which was surprising to me. When I first went there not one person knew about the gene. It’s scary that something this deadly no one seems to know about,” England said.

When doctors identify someone carrying the CDH1 gene the first recommendation is to remove the stomach in order to prevent an occurrence of cancer.

“It’s a strange battle,” England elaborated. “How do you take out a healthy organ? But it’s a preventative measure because most of the time the cancer doesn’t show up on tests. It’s only after doctors have dissected the stomach that they might discover it was riddled with cancer,” England said.

For many people, life without a stomach seems unimaginable.

“Doctors remove the stomach and then pull up ten inches of the small intestine and connect it to the esophagus, almost like a log flume. For the first five days after the surgery I wasn’t allowed to ingest anything. They allowed me water to wet my lips with but there was nothing else. After five days the first thing I was allowed to ingest was a barium dye to make sure there wasn’t any leakage. Then they introduced water, ice chips and clear broth,” England explained.

Eventually, England was able to work herself back up to regular foods, including pizza.

“Over time the body realizes nothing will change and it begins to slow down the process of food through the intestines in order to get the most nutrients,” England stated.

Without a stomach, England does not feel hunger pangs like many do.

Initially England had to eat by the clock after her surgery, once every hour or hour-and-a-half.

“I don’t feel hunger but you quickly learn when your body needs to eat. It’s almost like the feeling you get if you have low blood sugar. I don’t really eat meals anymore. I like to say I graze. I eat little bits all day long. But, I can’t eat more than 15 bites at a time,” England said.

Something England has to be careful of is Dumping Syndrome, which is started by overeating or eating certain foods that send the body’s system into overdrive. Symptoms include sweats, nausea and diarrhea.

For England though, the fear isn’t just about how her body and her life are affected by the CDH1 gene mutation.

“It’s a hereditary gene that you have a 50/50 chance of passing on to your children. All my family members are panicking because they might have it,” England said.

For women, like England’s daughter Bethany, they are faced with a complicated issue of what to do if they carry the gene.

“Many people have to decide what to place first. Do I place the surgery before a family? If I wanted to get pregnant, could I support the child nutritionally?” England explained.

This debate was recently brought into the spotlight on ABC’s primetime drama ‘Grey’s Anatomy.’

Upon discovering that a family carries the CDH1 gene, the siblings must make their own decisions as to whether or not they should have their stomachs removed to prevent cancer.

“The show did fairly well explaining the mutation and what it does. Certainly there were things they did to create TV moments but the reactions of the siblings were very realistic. The episode accomplished what we with CDH1 are trying to do: it created some curiosity. If it causes people to think about HDGC and they Google CDH1 for information then it could save lives. That is worth it. Knowledge is power. It’s easier to be on the preventive side of cancer than to have to fight the disease,” England said.

England felt this was an excellent way to provide exposure for a problem so many people are unaware of.

“It is important for the general public and for health care professionals to be familiar with this because it is linked to different cancers. Someone might be a carrier and not realize it. If you look at family trees sometimes cancers can be identified and connected together. People need to take their health into their own hands,” England urged.

Currently, England and her children are waiting on test results that will confirm whether or not they are carriers of the CDH1 gene.

“After what I’ve been through with two cancer diagnoses we’ve all become very close and have learned how to appreciate each other. Now my children have empowerment. If Mom can make it through, I can too. Fear drives us to make good choices and bad choices and I feel that the fear we have is a good one that will put us on the fighting side of the battle,” England said.

The courage that England and her family have is best summed up by a quote she strives to live by.

“Courage is not a lack of fear. Courage is feeling the great fear and doing a thing because it must be done,” England said with a triumphant smile.

Despite her battle, England keeps her spirit strong and vibrant.

“My life has been a journey filled with fear and uncertainty, but through it all my faith is stronger, my relationships have strengthened and life is good. We have no control over what life throws our way, but we do have control over how we react to it. I hope I can be an inspiration to other CDH1 carriers and to cancer survivors in general. Push on…don’t let it rob you of life,” England encouraged.

Those who have been diagnosed with CDH1 have also taken on a mantra to help them through their struggles, adopted from the Maori tribe where the gene was first noticed: Kia Kaha, meaning be strong in the face of challenge.

For more information on CDH1 or to read more stories about people living with CDH1, visit www.bestronghearted.com or visit www.degregorio.org for more information about stomach and esophageal cancer.

2 Responses to Kia Kaha

  1. Cecily(Wilson) Guiney says:

    I had a total gastrectomy on Oct23/08,and to date life is good.It was a struggle at first adjusting to the new plumbling(LOL) but it sure beats the alternative.I watched my fathere die from this dreaded disease back in 1987.Medical genetics saved my life. To all who are deciding about gastrectomy I say weigh all your options and consult with your doctors and in the end make the decision that you feel is right for you.Every day I am thankful that I made the right decision because my pathology report did show beginning cancer cells forming.Good Luck to all and God bless

  2. attwood1 says:

    Thankyou for sharing this infomation ,i am 11 weeks plus 4 days into gettin on with my new lif after having TG for CDH1 ,i just had my second bout of dumping ,this happend on Monday this week ,it hit me ywice 2hrs 30 in the early part of the day and then later in the afternoon ,cause i think could have been brought on buy bad news ,is this possible ,.
    End result i spent a night in Accident & Emergency, strapped to a machine end result i had not had a heart attack ,but dumping syndrome had caused me the pain i had thought the second time that day was a heart attack .

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