The connection between women and radiation has a long, glow-in-the-dark history. In the 1920s, a group of young women were hired to paint watch dials with luminous paint laced with radium. They were taught to sharpen their precision by pressing the tips of their brushes to their lips and tongues. They did this day after day. While the company that hired them informed the medical community of the dangers of exposure to radium, this information was kept from the women workers.
These were the Radium Girls. Unwittingly, they fell victim to radiation poisoning. As they grew sick and began to die, alarmed workers filed claims against their employer. To shame them into silence, the company fired back, publicly attributing the women’s sickness to syphilis.
In all, 50 women died. Others lived through horrific illnesses and cancers. Today, their legacy is most associated with changes in occupational safety. But there’s a familiar ring to their story. These women had no information, their illnesses were discounted and they were unaware of what was happening to them.
Fast forward 90 years – and the Radium Girls are back.
A young woman sits comfortably on a quilt in Austin’s Mayfield Park. She looks happy and healthy; pixie smile, shiny blond hair, cut short. She is 36-years old, a survivor of cervical cancer that required surgery, chemotherapy and radiation. She’s been cancer-free for three years. But she’s far from healthy.
“I’ll never be with a guy again,” she says quietly. “What would I say? That I can’t be more than 10 feet from a ladies room, ever? That we can go for sushi or tacos, but hey, I’ll have to bring my own white bread?”
Welcome to the new age of survivorship. The fight against cancer has ushered in lifesaving treatments and a higher rate of patients living beyond their five-year benchmarks. But for thousands of gynecologic cancer survivors, the victory party is cut short by an illness with a name most have never heard: Pelvic Radiation Disease.
It’s a medical term with a back story that has yet to be told in the U.S. Compiling mountains of research, Dr. Jervoise Andreyev put Pelvic Radiation Disease on the medical map in 2010. Consultant Gastroenterologist in Pelvic Radiation Disease, Royal Marsden Hospital, London, Andreyev determined that unlike radiation to other parts of women’s bodies, pelvic radiation can cause damage and disease. His efforts to raise awareness have been so successful, the disease is now one of three priorities for the British Society of Gastroenterology.
“Europe is really waking up to this epidemic,” said Andreyev. “But I am afraid the U.S. is a very long way behind.”
Dr. Martin Hauer-Jensen is working to change that. He is director of the Division of Radiation Health, University of Arkansas for Medical Sciences.
“Pelvic radiation doesn’t affect just a single organ,” said Hauer-Jensen. “It affects the entire content of the pelvis; the bladder, colon, small bowel, everything in the pelvic region. Gastrointestinal problems are the most common chronic side effects impacting survivor’s lives. In fact, post-pelvic radiation intestinal dysfunction is more prevalent than Crohn’s Disease and Inflammatory Bowel Disease (IBD) combined.”
Pat Koehler was living a quiet life at her home in Boerne, Tex., having survived ovarian cancer in 1992. She had no symptoms until 2006.
“The first episode started suddenly, with severe abdominal pain that lasted for hours,” said Koehler. “I had no idea what was happening. I didn’t connect it to radiation.”
Neither did the doctors she visited during the next seven years, which included emergency room physicians, internists and gastroenterologists. A surgeon finally explained what was wrong.
“He looked at my CT scan and said my intestines appeared to be welded together,” said Koehler. “The small bowel was twisted but he said they couldn’t operate. There was too much scar tissue and damage from radiation and it wouldn’t be able to heal.”
The onset of symptoms has no universal timeline. They can develop months or years after treatment. Andreyev’s studies have identified a constellation of 23 symptoms that include abdominal pain, urgency, diarrhea, constipation, bleeding and incontinence. He also defined the investigative process for determining which abnormalities cause the symptoms, information that has led to better outcomes for European patients.
Hauer-Jensen cites several reasons for the sluggish response in the U.S. Oncologists focus on detecting recurrence. Physicians and gastroenterologists tend to equate symptoms with better known illnesses. And few clinicians see any benefit to investigating the consequences of something that cures cancer and saves lives.
“That’s the tough part,” he said. “Everyone thinks survivors should be grateful to be alive and get on with their lives without complaining. But the symptoms can be devastating.”
With no diagnosis, survivors are often left to manage symptoms on their own. But the fallout from pelvic radiation goes beyond the physical. This is a disease marked by shame and isolation.
“It’s embarrassing,” said Vianna Lopez, a six-year survivor of endometrial cancer. The unpredictability of her symptoms has rendered her virtually house-bound at 40 years old.
“I earned a degree and planned on a career,” said Lopez. “But my condition makes that impossible. You can’t work, you stop going out, you stop making new friends. My life is nothing like what I imagined when I beat cancer. I beat it for what?”
Every year, some 95,000 U.S. women are diagnosed with gynecologic cancer. Hauer-Jensen says women treated with pelvic radiation constitute 70 percent of those suffering symptoms.
At a patio table outside Cuvee Coffee Bar in Austin, a small group of women agree to talk about their post-radiation lives. They ask to remain anonymous.
“We are women on the go, literally,” laughs one. “I’ve got about 35 minutes after I eat. On a good day. I’ve kept my job because I plan ahead. When I’ve got an event, I don’t eat the day before. On the up side, I’m a size zero.”
“I had to quit,” said a 52-year old former teacher. “I thought the battle was cancer. But all these issues started four years ago and never stopped. Your world gets smaller.”
Fueled by Andreyev’s advocacy, European patients took charge, establishing the Pelvic Radiation Disease Association as a registered charity. Getting the disease out of hiding in the U.S. likely requires a similar strategy. But research, funding and awareness campaigns on behalf of gynecologic cancers fall far below those dedicated to breast cancer. Drawing interest to a secondary problem may be a tough sell.
“It’s comforting to know there’s a name for it, and women need to know this,” said Koehler. “So do their doctors.”
In Mayfield Park, the pixie-smiled survivor watches a peacock display his plumage.
“This is where I come when I feel ugly,” she said. “It reminds me there’s beauty in the world. That’s the way it is for us. We’re alone. We’re like the new Radium Girls. They got sick and nobody believed them. But the truth came out. Our truth is we got cured and it made us sick. We need a little help here.”
Read Tranette’s previous Sisterhood of Survivorship piece: C-ing It Through