Running in the family

It's a gene no one wants to have, and one family in Renews is taking drastic steps to safeguard their health

Danette Dooley danette@nl.rogers.com
Published on November 26, 2008

For many people, Sept. 11 conjures up images of death and destruction.

Amelda (Wilson) Boland, 41, of Renews will remember Sept. 11, 2008 as the date she had lifesaving surgery.

Her father died of stomach cancer in 1987 at age 62.

"We knew Dad died from a rare form of cancer, but we had no idea it was genetically linked at that time ...," she said, "and this cancer has taken so many lives in our family already."

For many people, Sept. 11 conjures up images of death and destruction.

Amelda (Wilson) Boland, 41, of Renews will remember Sept. 11, 2008 as the date she had lifesaving surgery.

Her father died of stomach cancer in 1987 at age 62.

"We knew Dad died from a rare form of cancer, but we had no idea it was genetically linked at that time ...," she said, "and this cancer has taken so many lives in our family already."

Hereditary diffuse gastric cancer begins in the lining of the stomach.

An aggressive cancer, it is difficult to diagnose and is usually incurable once it is advanced enough to be detected.

Boland's aunt died of it before she was 35.

Most people with the gene are from the Merasheen Island/Placentia Bay area.

Earlier this year, a blood test confirmed Boland had a genetic mutation linked to the cancer. The gene has been traced back to her great-great-grandmother.

"I knew if I had it that I was going to go for the gastrectomy," she says.

"After seeing my dad and my aunt and numerous other family members suffer, I didn't want to go through that because by the time it's discovered, it's usually spread to other different organs."

In September, Boland had her stomach removed and her esophagus connected to her small intestine.

Although an endoscopy test to detect stomach cancer was negative in June, biopsy reports after her stomach was removed confirmed that there were seven spots of cancer already in her stomach lining.

Boland calls the surgery life changing as well as life saving.

Her days are now filled with weakness, nausea and pain.

"It's been a rough road and I think it will be for another while," she said.

"I've got no energy whatsoever, whereas I used to be a very active person. Even when I wake up in the morning, by 10 o'clock I'm really tired. And a trip to town like today is really exhausting."

Boland was in St. John's Monday for a doctor's appointment.

Taking care of her health is crucial, she said, and that means eating small amounts of food every two hours.

That's difficult, when the mere thought of food makes her feel sick.

"When I try to eat, I've been having a problem with getting things stuck," she said, adding there's an operation she'll likely have that will make swallowing food a little easier.

Well into the interview, Boland says her body is telling her it's time to eat.

She peels a banana, takes three small bites, then says she feels full.

Since the surgery, she's lost 30 lbs.

"This is so different for me, because I used to love to eat," she said.

People who carry the gene are also at a higher risk of developing breast cancer. This may mean that sometime down the road, Boland will undergo a double mastectomy.

Boland hasn't returned to her job as a student assistant and her husband, who's her main caregiver, Gerry is still off work from his job at Hibernia.

"Only for the help of my husband and my family and friends coming in preparing the meals and getting my youngest daughter ready for school - because I haven't been able to do any of that - without them I don't know where I'd be," she said.

Boland is grateful to her surgeon, Dr. Alan Kwan and to genetic counsellor Dr. Andree MacMillan.

Boland's sister, who also tested positive for the gene, had her stomach removed just weeks ago.

Boland's 24-year-old daughter - who has two young children - also carries the gene.

"It's devastating for her, especially after seeing how sick and miserable I've been and seeing my sister go through this, too," Boland says.

"She's still making up her mind on what she's going to do."

There is a 50/50 chance that Boland's 10-year-old daughter will carry the gene, but testing won't be done until she's 18.

Boland's doctors say her recuperation could take 18 months.

"I'm just soldiering along, taking it day-by-day," she says.

Genetic testing for the former of cancer in Boland's family is available at Dr. David Huntsman's laboratory at the University of British Columbia.

Huntsman is a graduate of Memorial University's medical school.

Boland said her message to others is that, if there is any chance the gene may be in your family, get tested.

All it takes is a simple blood test.

"Then," she said, "if you have the gene, you can make the decision on whether or not you want to do something about it and not wait until it's too late."

danette@nl.rogers.com