Understanding the disease

William Joy – salivary/lacrimal glands

Decades of symptoms and confusion before a diagnosis that fit

“I had already seen about 40, maybe 50 doctors, and nobody could figure out what was going on,” recalls William.

After years of swelling in his jaw and repeated treatments, William was even told at one point that he had cancer. Then that story was reversed and William was told simply that his diagnosis was “unknown.” Decades after his first symptoms, some new ideas about testing, coupled with review of past biopsies through a new perspective, finally revealed IgG4-related disease. And, William observed soberly, “I got my life back.”

“The doctor told me… ‘I’m afraid you have cancer’… [then] ‘we made a mistake… it’s not cancer.’”

Cecilia Wainoga – pancreas/bile ducts

When symptoms looked like pancreatic cancer, but weren’t

“They said it’s a mass… it is tumor,” said Cecilia.

Cecilia’s jaundice, rapid weight loss, and sudden abdominal pain led doctors to suspect pancreatic cancer. Multiple scans and biopsies later, the diagnosis changed: inflammation, not malignancy. IgG4-RD was silently affecting her pancreas and bile ducts. Only after that long stretch of fear and uncertainty did she learn it wasn’t cancer, and that IgG4-related disease was the real cause.

“Relief and disbelief hit at the same time,” she recalls. “It wasn’t cancer, but it was something I’d never imagined.”

Fred Zucconi – pancreas/bile ducts

Scheduled for a Whipple, he learned it wasn’t cancer after all

“They treated me for cancer before realizing it was my immune system,” he explains.

Fred’s journey began with jaundice and fatigue. His doctors placed a stent to drain bile, thinking it was a blockage caused by a malignancy. Next, he consented to a major surgery known as a “Whipple procedure” because the prevailing diagnosis was pancreatic cancer. After multiple diagnostic procedures and intense uncertainty, he learned that his IgG4 level was “through the roof” and finally heard the words “no cancer. “ The diagnosis, instead, was IgG4-related disease.

“The physician came to see me and he says, ‘no cancer,’” explained Fred.

John Durcan – retroperitoneal fibrosis

A mysterious mass, a stent, and months of not knowing what it was

“The mood changed… I think he said, 'We don’t know what it is. … it’s, we’re not going to use the C word',” said John.

John’s story began with a sudden, stabbing flank pain that struck him on his morning walk. It felt exactly like a kidney stone, but imaging in the emergency room showed an abdominal mass near his aorta and a blockage of his ureter affecting his kidney. For a stretch, the hardest part was the uncertainty: doctors told him they didn’t know what the mass was, and even after scans and a needle biopsy, he still didn’t have a clear name for the problem. Eventually, specialists recognized the pattern as IgG4-related retroperitoneal fibrosis and moved him toward the right treatment plan.

“It was a relief to learn what caused it—and that there was treatment,” he said.