SANDY — As children they played together, growing up in the same Sandy neighborhood. Now three women, all in their early 30s, are fighting the same deadly brain tumor.
“The first thing that went through my head (was), ‘I can’t have a brain tumor, I’m a mom,’ ” said Julie Penrod, who now lives in Ocean City, N.J.
Penrod contacted KSL News a few months ago asking the station to investigate cancer rates in Utah.
“There is something strange going on in our neighborhood and I need your help,” she wrote. “Do you know if any studies have been done linking our neighborhood to cancer, specifically brain tumors?”
Penrod and former childhood neighbors, Jennifer Roper, who now lives in Gilbert, Ariz., and Lisa Calderwood of Midway, Utah, are all battling an anaplastic astrocytoma.
“It took me a while to really process what was happening. I didn’t understand at first,” Calderwood said.
Roper received her diagnosis in August, seven months after Calderwood was diagnosed.
“I screamed, I cried, I went through every emotion,” she said. “I didn’t hear about anybody’s brain cancer until after I was diagnosed, and then my home neighborhood contacted me telling me what was going on.”
Roper’s dad, John Rasmussen, said cancer is a frequent topic of conversation at church. He attends the same Church of Jesus Christ of Latter-day Saints ward as Calderwood’s and Penrod’s parents. The families all live near 2130 East and 10000 South in Sandy.
“It is curious that there are nine in such a small area,” Rasmussen said, referring to other neighbors he has known with brain tumors. Not all those people had cancerous tumors.
The Utah Department of Health has investigated the southern portion of the Salt Lake Valley and the northern portion of Utah County four times since 2005 and found a possible brain cancer cluster.
“It is very weak, and so statistically we can’t really pin it down, and we can’t find any causes for it, but we do know it is there and we have investigated it several times,” said Sam LeFevre, an environmental epidemiologist with the Utah Department of Health.
The average risk of getting brain cancer in any one year is approximately 1 in 13,698, according to the Central Brain Tumor Registry of the United States.
The health department suspects the risk might be about one-and-a-half times higher in this area, but researchers are only 60 percent confident the cluster exists. Acceptable levels of statistical power require a 90- to 95-percent confidence level.
“The truth is for most cancers, and particularly brain cancers, we essentially think it is bad luck,” said Howard Colman, director of medical neuro-oncology at the Huntsman Cancer Institute.
“For the vast majority of brain tumors, we don’t think there is an environmental or genetic risk,” he said.
Colman is Calderwood’s doctor. He is also part of a research team at HCI attempting to utilize unique resources, including the Utah Population Database and high-risk family pedigrees to try and identify new genetic and familial factors that are associated with increased risk of development of multiple types of benign and malignant brain tumors.
Brain cancer rates in Utah have increased over the last 30 years. The health department recently launched a statewide scan for gliomas, which make up 80 percent of all malignant brain tumors. (Astrocytomas are a type of glioma.)
“If we can help people understand they need to go see their physician if they have health concerns, particularly with their brain, that is important for us,” LeFevre said.
He and Colman advise people not to ignore problems with vision or balance, episodes of confusion, numbness, or new onset or change in pattern of headaches.
“I had (headaches) every day, but I really didn’t think anything of it because I thought I was a reasonably healthy person,” Calderwood said.
Roper said her left arm went numb. “I actually thought I was having a stroke,” she said.
Initially, Roper, Calderwood and Penrod were each given a grim prognosis.
“The first doctor said you have a year to live, and that was devastating. But I’m still here, and that was six years ago; and so whenever I find people that have a brain tumor … I’ll just say, ‘I have a brain tumor and I’m doing great,’ ” said Penrod.
Chemotherapy and radiation treatments have so far been successful. The women all recently had MRIs, and doctors told them they are pleased with the results.
Roper, Calderwood and Penrod share the good news and hard days with each other.
“To have someone going through what I’m going through. It is just nice to have that support,” Calderwood said.
“It is just amazing how much our lives are alike,” Roper said.
The women continue to draw strength from each other and remain optimistic.
“I consider myself a survivor. I know my journey is far from over,” Calderwood said.
“I just live each day to the fullest. That is all I can do because I have no control over the situation,” Roper said.
The Utah Department of Health has identified four other potential cancer hot spots in Washington County, Box Elder County, Cache County and Layton. KSL will take a closer look at that research Friday on KSL 5 News at 9.
By Candice Madsen and Mike Headrick
The enactment of TREVOR’S LAW will assist children and communities in the investigation in to what is causing clusters like the one in Sandy.