A family of cancer

International Desk: Lacy Anderson has a rare form of stomach cancer, but she is not alone.

In fact, all but one member of her family of nine share her same diagnosis.

One Anderson has already succumbed to the cancer. Six are now cancer free, but only because they had their stomachs removed altogether.

Lacy's is the final battle with hereditary diffuse stomach cancer. 

The disease is the result of a genetic mutation, affecting only abut 400 known families; 56 and 70 percent of members of a family with the mutation develop the cancer; in Lacy's family, it has struck nearly 90 per cent.

Despite her genetic profile, doctors dismissed 28-year-old Lacy's stomach troubles as 'stress,' she says, and it her cancer was already stage four by the time it was finally diagnosed.  

Lacy has idea what her prognosis is, so she is marrying her boyfriend of two years on Saturday, and drawing on the strength of a family that understands her illness like no one else could as she undergoes chemotherapy and fights for her life.

It started with Uncle Frank.

Every time Lacy's father's brother got a colonoscopy, doctors found polyps all over his colon.

Suspecting colon cancer or another illness, his doctors ran blood tests, and found out that he had a mutation on his CDH1 gene, quite by accident.

Once his doctors knew he had the mutation, they knew Frank's cancer was almost certainly hereditary gastric diffuse cancer (HGDC). He was diagnosed in June of last year.

And once they knew that Frank had the mutation, his two children, Laura and Eric, got tested for it, and were positive.

The same story played out for Lacy's father, John, and her older brother, Robert.
'It just kept getting scarier and scarier,' Lacy told Daily Mail Online.

There are about 120 mutations that can happen along the CDH1 gene, and any of them can cause the rare stomach cancer because the gene normally codes for a tumor suppressing protein.

These mutations can also cause breast and ovarian cancers, but most commonly tumors begin in the stomach.

HGDC gets its name from the pattern of its tumor growth.

It is marked by a series of small clusters of cancer cells distributed sporadically throughout the stomach lining.

Endoscopies typically examine the  upper part of the stomach, from where the cancerous clusters are not visible. Colonoscopies don't catch it either.

Coupled with the fact that it is rare, and therefore not at the top of the list of usual suspects most doctors look for, this means that HGDC often doesn't get diagnosed until it is in its late stages, when the survival rate may be as low as 20 percent.

Such was the case for Lacy's uncle, Frank, who died in May at age 63. 

She didn't know it yet, but the same would be true for Lacy, too. 

Lacy and her brothers, John Jr and Richie, finally decided to get tested as well and were positive for the genetic mutation. 

The odds of getting HDGC are so high for those who have the mutation that doctors recommend removing the stomach preventatively.

Because the cancer is so often missed by endoscopies, the best way to screen for HDGC is the removal surgery itself.

So, in addition to Frank (before his death) six members of the Anderson family traveled to either the University of Chicago or to Maryland - where several of them were enrolled in a National Institutes of Health (NIH) study on HDGC - to have full gastrectomies.

'There was cancer present in each and every one of them,' Lacy told Daily Mail Online gravely. 

For the last year, Lacy's stomach had bothered her, but, she figured, 'I'm the youngest of [the family], surely I've got plenty of time,' before her mutated gene turned against her and brought on cancer.

It wasn't until the last six months that her symptoms seemed serious enough to warrant a trip to the doctor.

'I went to the emergency room, a clinic, my regular doctor; everyone just kept talking about stress,' Lacy says.

'They thought it was bacterial or maybe ulcers, but no one would ever actually do a CT scan or anything to look inside and see what was going on. I'm not sure if they didn't believe me or were worried about insurance or what.'

By the time Lacy finally went to get 'tested' for the cancer, by having NIH surgeons open her up to remove her stomach, it was too late.

On July 14, she found out that she had stave IV stomach cancer that had spread to her intestines and had caused fluid to build up in her abdomen.

'If they were able to get me in to start it just a week [after diagnosis], regardless of my birthday, that was the best gift I could have received.' 

Even with the lucky early start on chemo Lacy knew that the future was uncertain for her, and for her relationship with her boyfriend of two years, Adam Levine.

'I came home from all that and told him this was probably going to be the hardest thing we could have to go through. He didn't sign up for this so I understood if he wanted to walk away,' Lacy told Daily Mail Online.

'He said he would never, so I asked him to marry me.'

Since the trouble with her stomach began last year, Lacy has become too sick to work, and had to rely increasingly on Adam to help out around the house.

She has dropped weight continuously. She once weighed 300 lbs, but is now just half of that, at 145 lbs.

'I'm extremely self-conscious about my weight, but that never stops Adam from telling me I'm beautiful every day,' Lacy says.

So far, she has had three chemo treatments, and they haven't treated her too badly.

Source: The Daily Mail



risingbd/Sept 1, 2018/Mukul