When most of us sit down to look at a family picture, we laugh at hairdos or tell stories about our relatives that make us laugh. For Angela Venable Sallis, it’s to point out the number of them who died from a little-known genetic mutation, passed from one generation to the next without warning.
“This is the last picture that was made of my father and mother and my whole family,” she says during a recent interview with WINC. Magazine. “There’s nine of us. She has passed on. She has passed on. … Four of us have had cancer of some sort, and I’ve had three sisters pass of cancer.”
Angela and her doctors determined, through a series of circumstances involving breast cancers, colon cancers and stomach cancers that seem rampant in the family, that a gene mutation labeled CDH1 is the root cause.
Her paternal grandmother, died at 59 of colon cancer, and after pulling her death certificate from 1957, Angela says she at least has a starting point to begin fighting the battle.
“Although we don’t know for sure, we believe she is the one that probably passed on this gene,” Angela says. “This CDH1 involves the stomach, the breast and the colon.”
Angela’s sisters, Paulette, 24, died of uterine cancer. Another, Mary Nell, passed at 55 of scleroderma and breast cancer. One of her father’s sisters died at 44 of stomach cancer, and another aunt had breast cancer and died in her 70s. A doctor along the way pointed out the possibility of CDH1.
“When I wound up with breast cancer, my doctor tested me to see if there was a mutation gene on my father’s side of the family,” Angela says. “It came back I had the gene. I could have fell out of the chair. … I’ve never had acid reflux or stomach issues or anything.”
Dr. Brian Hughes, a gastroenterologist in Little Rock, is one of the doctors treating the family. Angela says he only has had five patients with this gene, and four of them in the same family. Now, he has a whole other group — Angela, her niece Robbye Langston, Angela’s daughter Vanetta Bloom and her 21-year-old twins Haley and Alexis Hamons — all who tested positive for CDH1.
“He calls this the silent killer,” Angela says. “All tests for [stomach cancer] can come back negative, even if it is present because it is in the lining of the stomach. Just because you have these biopsies done doesn’t mean it is going to show anything.”
The only course of action to stop the spread of the cancer before it is too late is stomach removal surgery. Not only is the genetic test costly on its own, but the medical procedures that accompany treatment are limiting financially, considering the preventative nature of the surgery.
Angela had her stomach removed on August 30. Vanetta’s surgery was September 13 and Robbye’s was October 4 of this year. Haley and Alexis, both college students, are next. They are waiting on gathering enough money for an insurance deductible to take the required steps to preserve their lives.
“The CDH1 gene doesn’t present symptoms and doesn’t cause a tumor, but by the time you realize it, it has spread to other parts of the body, and I think that is what happened to my sisters,” Angela says. “The cancer basically starts in the stomach and by the time it spreads to other parts of the body, they are not concentrating on the stomach.”
Robbye says her mother and Angela’s sister, Mary Nell, was diagnosed with breast cancer, but at the time of her death, her stomach was “as hard as a rock.”
“When it comes back in your bones, there is nothing they can do anyway,” Robbye says. “We feel like hers probably started in the stomach and they found it in the breast.”
The family says there are few people in the United States or the world who know about this cancer gene or even who have been tested. The women have joined online groups and have self-educated on their conditions with doctors who have been instrumental in the process.
Doctors have to step in with insurance companies to personally explain the necessity of initial testing and procedures, even though paperwork provided by each of the women identifies a positive result for “Hereditary Diffuse Gastric Cancer” and states “High Cancer Risk.”
“Basically, one biopsy can come back positive and the next one negative,” Vanetta says. “It’s either biopsies every six months or have your stomach removed. From what I have seen in our family, it has been discovered in the lobular cancer. It’s always the focus on breast cancer, breast cancer, breast cancer, and then you forget about the other. Once it breaks through that [stomach wall], it spreads to her breast, her back, her bones. …”
Just a week before the interview with WINC., Haley and Alexis tested positive for CDH1. The girls are just realizing the implications moving forward. There is no avoiding the inevitable without stomach removal, doctors say.
“They can pass it on to any children that they have,” Robbye says. “It does not skip generations. My son is going to have to be tested. I have one boy. He’s 29.”
Angela says, “If I had tested negative, my bunch would have been A-OK. My sister tested negative so her children don’t have it. For the girls, they not only have to decide to have their stomachs removed, but whether or not to have children because now they take the chance of passing this on to their children.”
Vanetta, who is still serving in the U.S. military, says the choice is tough for herself and her daughters. Because breast cancer is highly probable, the each of the women has to decide also whether to get a full mastectomy.
“Looking at the history of our family, basically everyone who has tested positive for lobular … no one knows to look in the stomach,” Vanetta says. “Other stomach cancers they can pick up on, but it seems like this one is evasive.”
Of Vanetta’s three children, Haley and Alexis have been the only one’s tested. Her son, also active duty in the military, has not been tested. Vanetta’s sister and Angela’s daughter, Rose, tested negative, and another sister, Renee, has not been tested.
“It’s just so hit or miss,” Angela says. “It’s just so scary. You see how fast this could spread,” Angela says. “It could just explode.”
And again, finding a positive result is more than a diagnosis. If Vanetta’s son is positive for the gene, stomach removal would mean the end of his military career. Vanetta has hit her 20-years and will soon retire from the military.
The whole paternal side of Sallis’ family, consisting of 27 grandchildren, are considering testing for CDH1 if they haven’t already.
All the family members agree getting doctors involved is key. Dr. Ahmed Ali at Noydeen Clinic in Conway is Angela’s primary care physician and supported her telling the family’s story for awareness.
“I think about it because it is what it is,” Alexis says. “I would rather have the surgery and get used to it and not be old and deal with it — no offense grandma — people don’t really know about it and people aren’t getting tested.”
November is National Stomach Cancer Awareness Month. For more information on the CDH1 gene, log onto ghr.nlm or nih.gov.