Rachel Orth: Navigating a Clinical Trial for Metastatic Gastric Cancer During the Pandemic
During Rachel Orth’s annual well-woman checkup in November 2020, a mass was discovered on her ovary. Rachel’s doctors scheduled a surgery for December to remove what they thought was a benign tumor.
The surgery, however, revealed that Rachel had cancer. She was 33 years old with three young children.
“Because of COVID, I was only allowed to have my husband with me in the hospital,” Rachel explained. “He was in the waiting room by himself, so he was the one who had the first conversation with my doctor when she told him that the biopsies had shown cancer. When I was moved to my room, he was waiting for me, and he was the first one to tell me that it was cancer.”
Learning that she had advanced gastric cancer was overwhelming, an experience only compounded by the pandemic.
“Suddenly my life went from school drop-offs and pickups, taking care of my preschooler, going grocery shopping, and taking care of my family to a lot of doctors’ appointments, scans, infusions, and not feeling well and having to rely on a lot of people for help,” she said. “And during COVID-19, that was really difficult. I think cancer is probably the most isolating experience of my life. Going through that during the pandemic, which is another very isolating experience, was traumatizing.”
Rachel’s first oncology appointment was conducted on Zoom.
Rachel and her husband used the weeks of recovery following her surgery to seek additional expert opinions. Advised that her best option was to pursue clinical trials, she opted to go to the University of Texas MD Anderson Cancer Center in Houston, some 270 miles away from her home in Arlington, Texas.
Before joining a phase 1 clinical trial at MD Anderson, Rachel needed to undergo a series of procedures—an endoscopy, a colonoscopy, and a laparoscopy. But before she could start treatment, her husband became symptomatic with COVID-19.
“When he tested positive, I immediately contacted my team and let them know; they had me get tested and I was negative, but I had to quarantine,” she said.
As a result, Rachel’s medical procedures were delayed by two weeks.
“Then I started running a fever and became symptomatic which meant postponing the appointments again, which feels like a long time when you’ve been given a really poor prognosis of months to a year to live,” said Rachel.
After a month Rachel was able to undergo the needed procedures and enter the clinical trial, but once again she felt the impact of the pandemic.
“My husband was allowed to video call in for my appointments, but I was on campus alone going to my scans, blood work, and doctor appointments all by myself,” she said. “Sometimes I was in that room alone, going through the protocols. There was a lot of anxiety; I was processing this whole new world of terminal cancer. It was very scary.”
Rachel’s metastatic gastric cancer has responded well to the trial. She goes to Houston every three weeks for treatment.
“My scans have shown that the disease is stable and we’re really thankful for that,” said Rachel.
As a result, she is able to care for her children and is thankful to be able to do all the things that she likes to do with them.
“I’m going on a field trip with my daughter tomorrow to a tree farm. She’s so excited,” Rachel said in a recent interview.
Rachel strongly believes that funding for cancer research needs to be a priority. Only with robust and sustained funding for medical research will scientists be able to develop newer and better treatment options for patients with advanced disease like her.
“I think that funding for cancer treatments, especially late-stage treatments, is really critical because it is life-sustaining for me,” she said. “Right now, I’m alive because of the treatment that I have. Being part of that phase I clinical trial is what is keeping my cancer stable. It is what’s giving me hope for the future.”