Family fights back after 'mutation gene' strikes
Prescott Valley resident Darcy Morger-Grovenstein calls her family's mission in life "a journey of hope."
She would not have known it then, but the seeds of their mission were planted in 1979, when she went to her hometown in Montana to take care of some matters before her marriage in May of that year.
She found that her "strong and healthy 51-year-old mother," Victoria Morger, was very ill. Her abdomen was distended as if she were nine months pregnant, Morger-Grovenstein said. Within 24 hours, Morger was diagnosed with stage IV ovarian cancer, and she died 18 months later. Her family thought at the time that their mother's cancer may have been caused by the stress of raising nine children and her one vice: smoking cigarettes.
Morger-Grovenstein said no one thought Morger's disease was genetic. Over the course of time, Morger's family would find out that a gene was responsible for the cancer that caused her death.
Morger-Grovenstein has chronicled her family's experience in a piece she calls "The Journey of Hope."
In 2007, "the unthinkable" happened again, Morger-Grovenstein said. Her 39-year-old sister Audra found that she had stage IV ovarian cancer. It was then, Morger-Grovenstein writes, that the family first heard the term "BRCA mutation gene." It came to light that Morger's father had died of cancer in 1962, when he was just 66 years old. He had inherited the gene from his mother, who had died of breast cancer when she was 61 years old.
Morger-Grovenstein said all of her mother's family were Germans from Russia who had come from an area near Odessa and the Volga River at the turn of the 20th century.
"We discovered that we are people of Ashkenazi Jewish descent," she said, "explaining that scientists believe this BRACA gene originated in a gene that protected Jewish women from breast cancer, but then went rogue.
"As our sister battled this disease, we siblings began our own journeys of genetic testing and counseling. Ironically, the 50 percent chance of inheriting the genetic mutation turned out to be almost exact," she said.
"One had it, the next did not, the next did, the next did not ... and so on."
"Half of us were faced with the realization of inheriting the gene, and the other half suffered from survivor's guilt. The sisters and a brother with the gene mutation began more acute monitoring."
Sadly, Audra did not survive and died in 2011, when she was just 43 years old. In December 2012, Morger-Grovenstein relates, two more sisters were diagnosed with cancer.
Her sister Venetta had been under watchful eyes at MD Anderson Cancer Center, where she underwent breast MRIs every six months. Her 11th MRI revealed she had "triple-negative breast cancer, one of the deadliest forms of breast cancer, Morger-Grovenstein said.
Venetta had a mastectomy and then chemotherapy and breast reconstruction. Wallis had stage III ovarian cancer and underwent extensive abdominal surgery, followed by chemotherapy and then a mastectomy and reconstruction.
By mid-2013, both sisters had recovered well enough to run half marathons in Montana, where they live.
But, not long after that, bad news hit the family again, Morger-Grovenstein said. In August of 2013, another sister, Lisa, who did not inherit the BRACA I or II genetic mutation, was also diagnosed with breast cancer.
Her cancer was different and had spread into her lymph nodes and was stage II.
She also had a mastectomy and chemotherapy and was to have had breast reconstruction surgery earlier this summer.
However, as Lisa prepared for this surgery, doctors then discovered she had a different kind of cancer, very rare and stage IV. This type of cancer is called "ampillary water cancer," sometimes known as "Lynch syndrome," Morger-Grovenstein said.
Morger-Grovenstein said this kind of cancer can also be genetic and that Lisa underwent more genetic testing to determine if she had inherited a gene for this kind of cancer. Fortunately, the tests came back negative.
Morger-Grovenstein said Lisa is still recovering and having treatment for her cancer.
"It has become our family's mission to talk to others about our experiences - not for attention or pity, but to educate and to encourage others" Morger-Grovenstein said, noting that men with the BRACA gene mutation can develop pancreatic, breast and prostate cancer.
"While the prospect of cancer in anyone's life is a distressing thought, knowing your risk and being able to manage your health, your life, within that risk is empowering," she said.
She also chose to be tested to know if her children might be at risk of inheriting the gene, and fortunately her tests came back negative, which meant that her children would not inherit the BRCA genetic mutation.
"Many people think that if they take care of themselves, they won't have to worry about this type of cancer," Morger-Grovenstein said. "My sisters with BRCA A were all very healthy, athletic and in great shape when they were diagnosed.
"If we had known about the genetic mutation before our mother or sister was diagnosed with ovarian cancer, the knowledge may have saved their lives. Despite the appalling pattern of our family's medical history, our message is one of hope. We believe that every day mankind is getting closer to unraveling the mysteries of genetic codes and how to treat this condition before it becomes a disease."
In the meantime, Morger-Grovenstein urges anyone who has a family history of cancer or who notices a pattern of the disease within the family to consider genetic testing.