Mother of 4 Emily Ziegler Faced Pancreatic Cancer at Age 36

Contributing Writer
Julia Brabant
November 18, 2024

Diagnosed: August 2022
Current Status: No Evidence of Disease

Diagnosed with pancreatic cancer at just 36, St. Louis, Missouri resident and mother of four Emily Ziegler faced an uphill battle after an intensive Whipple surgery failed to remove her cancer in its entirety. Now, after switching oncology teams and trying a series of alternative treatments, she’s currently showing no evidence of disease and emerging with a fresh perspective about life and how she wants to spend it.

Emily had just celebrated her 36^th birthday when intense abdominal pain sidelined her, leading to a stint in the hospital for severe pancreatitis. Tests showed that she had elevated lipase levels, which can potentially indicate cancer, pancreatic issues and other serious health conditions. While a lipase level of 100 is typical, Emily’s had reached 10,000.

A subsequent bout with COVID-19 led to some downtime for Emily and her family followed by a stressful period of playing catch-up. A mother of four, Emily was also a mortuary student and working in a funeral home to help pay for her schooling. Catching COVID-19 only added to the challenges of managing her demanding schedule.

Though the family ultimately recovered from COVID, Emily soon faced another health hurdle during spring break, when her ongoing abdominal issues landed her back in the hospital. The hospital’s medical team recommended Emily see a gastroenterologist, and while she planned to do so, she hoped to put it off until she could complete her current semester of school.

“I wanted to finish out the semester,” Emily said. “I was young and healthy; I didn’t think anything serious was wrong with me.”

Before she had a chance to visit a GI specialist, Emily woke up one morning in excruciating pain. Digestive issues followed, so she called her doctor, who had her come in the following Monday. The doctor prescribed some pain medications and referred Emily to a gastroenterologist, with a consultation scheduled for Aug. 30.

When Emily shared her situation with her best friend, an X-ray technician, the friend urged her against waiting that long for a consult. Instead, the friend contacted a colleague who agreed to see Emily the following day. By this point, Emily was also experiencing extreme itchiness, which she thought might be a side effect of the pain medication.

Emily suspected she might have a dilated pancreatic duct (Emily’s parents were both nurses, and she’s also studied dentistry before switching to mortuary science, so she had some existing medical knowledge and training). She’d also had her gallbladder taken out several years prior, so she thought her issues could have something to do with that surgery.

Emily showed up to the new appointment with her skin looking “as yellow as a Simpsons character.” The doctor performed an ERCP, which may be able to identify certain issues within the biliary or pancreatic ductal systems. The doctor also wanted to do a sphincterotomy and recommended Emily also have an endoscopic ultrasound and a biopsy. The doctor mentioned something about a “Whipple procedure,” and Emily’s X-ray tech friend, who was with her at the appointment, knew what that meant and encouraged Emily to get her husband on the phone.

Soon after, the doctor delivered Emily’s diagnosis.

“I’m sorry, ma’am,” the doctor said. “You have Stage 2B pancreatic cancer.” The “Stage 2B” diagnosis meant that while Emily’s cancer was no longer limited to her pancreas, it had not yet spread to faraway organs, like her liver or lungs.

The doctor also said that the Whipple procedure, a common surgery used to treat pancreatic cancer, was out of the question due to Emily’s tumor having blood vessel involvement. Instead, Emily’s care team decided to start her on six months of chemotherapy using FOLFIRINOX.

Emily began chemotherapy and experienced a number of complications along the way, including bad neuropathy and kidney damage. However, her tumor did shrink away from her blood vessels, allowing her to qualify for a Whipple.

“It was a massive ordeal,” Emily said. “It was a nightmare, but I made it through.”

After her surgery, Emily’s doctor delivered what seemed like good news.

“We got it all,” the surgeon had said. “You can go back to work and school.”

Emily was hesitant to resume regular life so quickly, as her body didn’t feel fully recovered. She also continued to have some of the symptoms she’d had prior to the surgery, including gray stools. Emily’s doctor recommended she undergo therapy and take sleeping pills to help manage her anxiety and improve her well-being.

When Emily returned later for follow-up scans, doctors identified another tumor that was the same size as the first. They recommended she undergo a PET scan.

Deciding it was time for a second opinion, Emily went to a major cancer center and asked her original doctors to send her scans to the new facility. The tumor board at the new hospital needed them to determine next steps, but there were considerable delays in getting the scans sent to the right place.

Once the new hospital finally received what it needed, the doctor there delivered devastating news.

“They left a positive margin after your Whipple,” the doctor said. “You didn’t have chemo or radiation after the Whipple?!”

Shocked and dismayed, Emily followed up with her original doctor to inquire about her options. The hospital recommended she consider one of their clinical trials. Knowing she needed treatment, first and foremost, Emily contacted a patient advocate for help. She also began exploring alternative options on her own, taking several medications used to treat parasitic conditions at the recommendation of her mother-in-law.

“At this point, I was thinking, it’s this or death,” Emily said. “If I don’t do something now, I’m going to die. It sounds crazy, but I was in a desperate situation.”

Once the tumor board at the second hospital finally received what they needed to consider Emily’s case, its members recommended Emily undergo six weeks of chemotherapy and pair it with radiation five times a week. She also had a celiac plexus nerve block to help relieve some of her pain.

Emily’s tumor markers are now dropping, indicating that her treatment is working. Her medical team also considers her “NED,” meaning she currently shows no evidence of disease. However, Emily’s body still hasn’t fully recovered, and she continues to have check-ups to monitor her condition every three months.

Because of her medical hardships, Emily has altered her plans for the future somewhat. While she no longer studies mortuary science, she does have plans to eventually re-enter the funeral industry in some capacity. In the meantime, she’s making the most of every day she has to spend with her blended family, which includes two of her own biological children and two she gained through a second marriage.

“The only thing that’s important to me now is my family; all I want to do is make memories with them,” Emily said.

Emily is also finding time to pursue hobbies and interests she’s always had, but struggled to make time for in the past.

“I can pick up hobbies that I never had before,” she said, mentioning that she’s begun learning how to make mead, an alcoholic beverage created by fermenting honey with water. “What’s stopping me from doing all these things?”

As Emily reflects on her recent journey, several things have become increasingly clear.

For starters, she recognizes the importance of feeling comfortable and confident in one’s care team. She felt let down by her original team but has faith in her second oncologist and radiation oncologist, both of whom are mothers, which Emily believes gave them a better understanding of her plight.

“I’m definitely skeptical about how patients are treated,” Emily said. “I feel like there was a lot of dismissal.”

She also questions the first hospital’s decision to push her toward clinical trials and its failure to inform her about the positive margins that remained after surgery.

“I felt like I was being completely gaslit for months,” she said. “If they knew about the positive margin, that should have been an indicator that there were things we need to readdress.”

While Emily’s recovery hasn’t been easy, she has had some positive news. She didn’t develop diabetes, which is common among people with pancreatic cancer. She also didn’t enter menopause prematurely, which is something doctors warned her could happen.

Emily also found comfort in her faith throughout her journey, noting that her church community was a lifeline for her and her family, organizing meal trains through the Meal Train app and otherwise lending emotional and practical support that raised Emily’s spirits.

Emily hopes that by sharing her own story, she can help other people facing similar circumstances and reduce some of the common misconceptions people have about pancreatic cancer.

“There’s this misconception that pancreatic cancer only affects older people,” she said. Emily also hopes more members of the medical community will consider exploring alternative treatment options that fall within legal limits.

“Don’t write us off as dead,” she said. “Try to treat, and try different treatments. They need to be more willing to consider alternative treatments.”

Emily also has some practical advice for patients based on her own experiences.

“Always get second and third opinions,” she said. “And when you get a scan, don’t leave until you have your own copy of it in your hands.”

Emily also cautions against having a “defeatist” attitude, noting how much her spirituality helped guide her through the toughest times.

“My faith played a huge role,” she said. “When I was diagnosed, I felt the Lord coming to tell me he’d get me through the other side. Yes; there were hard times, but I knew I’d be one of the ones to beat this. Having this mentality got me through.”

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