In late March, halfway through her second pregnancy, April Lopossa went for her routine 20-week ultrasound.
The scan showed a healthy baby, but also something unexpected — a mass on her abdomen that had not been there just a couple of weeks before. A follow-up MRI detected a 7-centimeter malignant gastrointestinal stromal tumor, or GIST, the sixth to be diagnosed in the last few years in Martinsville, Indiana, a city of 15,000.
Lopossa suspects her cancer may be linked to pollution in the city center, which has been designated a Superfund site by the U.S. Environmental Protection Agency.
Only about 25 pregnant women, half of them in the United States, have ever been diagnosed with a GIST. Lopossa is one of them.
“My OB told me I had a higher chance of winning the lottery than all of this happening,” Lopossa said. “I guess I should play now.”
Amelia Rose, named for two of April and husband Tyler’s favorite “Dr. Who” characters, was born by Cesarean section July 9. Next Month, Lopossa will have further surgery to remove the GIST tumor and part of her bowel. Then she’ll begin a course of chemotherapy pills, which she’ll take for the rest of her life.
“It could be worse; I could have no treatment. It could have never been found,” she said. “If I would have never gotten pregnant, it probably would have gone undiagnosed for a very long time and then be too late.”
Lopossa grew up in Martinsville. For more than 10 years, she worked as a customer service manager overnight at Walmart. She quit when she had her first baby, Athena, in December 2018, then switched to a daytime job at FedEx.
By May of 2019, she started having chronic diarrhea.
“It kept getting worse and worse, and I was having a really hard time getting in to see a doctor,” Lopossa said. “I was working 60 hours a week, and having a daughter, I just blew it off.”
Eventually, she found a doctor and underwent a variety of tests. Everything came back normal, except for some slight inflammation.
In November 2019, Lopossa found out she was pregnant with Amelia. The diarrhea worsened.
“Then I started having these small attacks in my upper abdomen,” she said. “If I ate certain foods, it would make me nauseous and I would be in a lot of pain, like labor pain.”
On March 9 of this year, pain sent her to the emergency room. Doctors told her she had gallstones and they would need to remove her gallbladder once COVID-19 restrictions were lifted. The abdominal scan showed no other abnormalities.
Ten days later, her pregnancy ultrasound revealed the mass, which doctors suspected to be a GIST or another rare growth called a desmoid tumor. Before the tumor was biopsied, Lopossa began researching oncologists in Indiana who specialized in these types of tumors. She found only two. Anxious about waiting for an appointment to be made for her, she contacted one of the two, Dr. Rushing, directly.
She met with him to discuss treatment options right away.
She was now 31, six months pregnant with her second child and diagnosed with an extremely rare type of cancer.
“You don’t expect it, especially being young, and I’ve never really had any health issues until this year,” she said.
Dr. Ruemu Birhiray, an oncologist with Hematology Oncology of Indiana in Indianapolis, said GIST arises primarily from the nerves that line the walls of the stomach or small intestine. On average, he treats two new GIST patients annually, most of whom are men over 50.
“I think the only risk factor people know of is age,” Birhiray said. “We know that as people get older, they are more likely to have GIST tumors.”
Lopossa is the only woman and the youngest to date in Martinsville to be diagnosed with a GIST. The other five have been men over 50, although recently, Lopossa’s sister has been experiencing similar symptoms and is being tested for the disease.
There’s some suspicion that these cancers and others in Martinsville might stem from pollution at the Superfund site.
Lopossa didn’t know about the site until recently, when one of her sister’s friends, who is 18, was diagnosed with a different rare cancer. Then she started hearing more people talking about problems with the water.
“I know everyone always joked about ‘don’t drink the water,’ but I never really paid attention,” she said. “I was also young and had no reason to care until I got older. Now that I have a daughter, that worries me too.”
Centered near the intersection of Pike and Mulberry Streets in downtown Martinsville is a 38-acre polluted plume that extends to the city’s municipal well field and drinking water plant. It is contaminated with tetrachloroethylene, or PCE, and trichloroethene, or TCE. In 2013, this plume was added to the Environmental Protection Agency’s the National Priorities List and designated a Superfund site.
The city has three wells serving 15,000 residents. In 2002, the city first detected PCE in Municipal Well 3 at levels exceeded the Indiana Department of Environmental Management Maximum Contaminant Level, or MCL, of five parts per billion.
The city added active carbon filtration to the well water treatment in 2005.
In addition to the Superfund site, there are four additional chemical plumes in Martinsville. The O’Neal plume has just finished remediation and the Superfund final draft remediation proposal is scheduled to be released later this summer.
Lopossa suspects her cancer is related to the pollution.
“I know they say that a GIST isn’t environmental and it’s spontaneously random, but I feel it’s just too strange to have it with all of the other issues with the water in Martinsville,” she said.
Birhiray said there’s no way to know exactly what is causing the cancer cases in Martinsville. The relatively small number of patients makes it hard to say for sure, he said, but it’s a problem worth exploring.
“It’s a very good potential question to say, ‘This is uncommon, so why is it happening more in Martinsville? Is it because of the water? Is there a genetic predisposition?’” he said. “There are a whole lot of factors. You ask a question and hopefully in time you can answer it. But immediately you won’t be able to answer it because there’s just no way of knowing 100%.”
Lopossa is currently adjusting to her new life. On medical advice, she has quit her job. Family and friends are helping with her children while she goes to doctors’ appointments and discusses treatment options. Her husband is working overtime to pick up the slack.
“My hope is that once I start the medicine, the side effects won’t be too bad and I will still be able to be my normal self,” she said. “The side effects are nausea, vomiting, diarrhea, muscle and joint pain, hard things to think about when you’re going to have a newborn and a toddler running around. I try to focus on the good parts and not think about that,” she said.
She will also be immunocompromised, which will make life challenging with two small children. However, she knows that she is lucky to have options at all, as treatment for GIST is relatively new.
“If you go back and look, say 20 years ago, the word GIST tumor was rarely used in the literature. It was utterly under-recognized,” Birhiray said. “The reason why it was under-recognized is there wasn’t a treatment for it.”
The first treatment was found by accident, when makers of the drug now given to GIST patients realized it inhibited the mutation that causes the tumors. Birhiray said doctors have since had a lot of success treating the disease.
“This was a disease that essentially had a death sentence,” he said. “Now we have four or five drugs approved by the FDA that are used for the treatment of GIST tumors. The side effects are usually pretty manageable, and quality of life is usually excellent for most patients, irrespective of their age. It’s totally different than any other cancer you can think of that has those kinds of statistics.”
When diagnosed early and with treatment there is an average 83% survival rate for GIST.
Lopossa said that given the size and location of her tumor, she has a medium to high risk of its returning. She will be monitored for the rest of her life.
“I don’t want to complain because it could be a lot worse, but there are days when I’m just so exhausted and worn out and I don’t want to do anything but cry,” she said.
But she stays busy, focusing on her daughters and making plans to take them to Florida next year.
In a short time, she has built a robust support network online as well as in her community. She wants to help others who might receive the same diagnosis.
“I want to able to continue raising my girls and doing the things we love — just being able to enjoy life,” she said. “I want to enjoy this time, knowing I had something that could potentially never have been found and could have killed me. You want to be with your family, friends and loved ones, making sure you are enjoying every moment possible.”
To read more about the Martinsville Superfund site please click here.