Sylvia Lindgren: Early Diagnosis by Accident

How a Blood Donation Led to an Almost 28-Year Pancreatic Cancer Survival Story

Written By Julia Brabant
June 2021

Diagnosed: March 9, 1992
Status: Survived Almost 28 Years
Sylvia Lindgren Passed Away December 2019 of Alzheimer’s Disease

Sylvia’s Story As Told By Her Daughter, Brenda Lindgren

Fridley, Minnesota’s Sylvia Lindgren was a longtime blood donor, and while she donated blood with the intent of helping save the lives of others, her efforts wound up saving her own.

After making a blood donation in December, 1991, Sylvia received a letter stating that the liver enzymes in her blood were too high and that her blood wouldn’t be usable. Blood tests also revealed elevated cholesterol levels, and professionals at the medical center where she made her donation encouraged her to visit her doctor right away to determine the problem.

Taking their advice, Sylvia scheduled an appointment for further testing at Fridley Medical Center. While awaiting the appointment, she began experiencing minor symptoms, including itchiness, loss of appetite, and slight weight loss. Within a few weeks, those symptoms progressed, and she found herself experiencing more rapid weight loss accompanied by abdominal and back pain, and, eventually, jaundice.

Sylvia underwent additional testing at Fridley’s Unity Hospital, and by March 9, 1992, she had a diagnosis: carcinoma of the head of the pancreas or intrapancreatic portion of the common bile duct. Her doctors told her she might have another four months to live. They also said that if she decided to have the Whipple procedure, an invasive surgery that involves removing the head of the pancreas, the gall bladder, the bile duct, and part of the first intestine, and survived it, she may live another five years.

The Whipple Surgery

Sylvia saw this as an easy decision, and while her doctors wanted to proceed with surgery right away, her weight loss made this impossible. Instead, she underwent intravenous feeding for a few days so that she could gain enough weight to boost her chances of survival.

Sylvia’s doctors performed the Whipple surgery on March 12, 1992. They were able to do so without Sylvia having to undergo chemotherapy or radiation first thanks to her early diagnosis. A highly dangerous medical procedure under any circumstance, the Whipple was particularly hazardous in the early 1990s, before advances in medical science made it somewhat safer in the years that followed.

Yet, Sylvia managed to not only survive the surgery, but surpass the expectations of her doctors and all cancer researchers, living another 27 years and nine months after her pancreatic cancer diagnosis. It wasn’t necessarily a bump-free ride – she had several bouts of pancreatitis, became borderline diabetic immediately following the procedure, and received a formal diabetes diagnosis in 2010. By the fall of 2014, she became insulin-dependent.

Despite these hurdles, Sylvia felt her pancreatic cancer battle was a relatively smooth one in comparison to many others. In 2015, she and her daughter, Brenda, learned about the Pancreatic Cancer Action Network (PanCAN) and its PurpleRideStride fundraiser and advocacy event. Realizing she could become a symbol of hope for others fighting the same disease, Sylvia became increasingly intertwined in the local and national pancreatic cancer communities.

Raising Awareness

Cognizant of the fact that it was a combination of luck and early diagnosis that led to her successful surgery and subsequent recovery, Sylvia, with her daughter’s help, began sharing her story.

“If we heard of anybody with a diagnosis, we put them in touch with Mom,” Brenda said. Brenda and Sylvia became regular fixtures at PanCAN’s PurpleRideStride, a walk/bike ride that generates funding for pancreatic cancer, and they found that, as the years ticked by, Sylvia’s presence became increasingly valuable to patients and their family members.

“People started to recognize her; they’d hear she was a 25-year survivor and it gave them so much hope to see her there in person,” Brenda said, noting that the team they formed in 2017 wore T-shirts proclaiming, “25 Years and Counting.”

“The shirts were attention-getters – people wanted to stand next to her in photos each year. She gave a lot of people hope at a time they could really use it.”

Sylvia passed away December 6, 2019, but doctors ultimately attributed her death to Alzheimer’s disease, rather than pancreatic cancer. Her daughter decided to not only continue to inspire and give hope to other patients, but to up the ante on her efforts. She signed on as a Survivor/Caregiver Engagement Chair for the Minnesota affiliate of PanCAN, and she continues to raise awareness about fundraisers, medical advances and other news relating to the fight against pancreatic cancer.

Part of Brenda’s commitment to the cause involves spreading the word about factors that may have contributed to her mother’s diagnosis.

Contributing Factors

Brenda believes that a blend of genetic and environmental factors likely led to her mother’s pancreatic cancer. There was a family history of the disease, with her brother also receiving a pancreatic cancer diagnosis. Unlike Sylvia, though, he lost his battle within two weeks of his diagnosis.

His death came after a lengthy career working for a Fridley-based company that was one of several suspected to have played a role in contaminating the land around it. The city of Fridley has a cancer rate that is 7% higher than that seen throughout the rest of Minnesota, raising questions about what risks residents face and what city officials might do to mitigate them.

Chatter about Fridley being a “Cancer Cluster,” or a geographic area that sees a greater-than-expected number of cancer cases, became so loud that famed Environmental Activist Erin Brockovich launched an ongoing investigation into the matter. The community is home to six of Minnesota’s 25 Superfund sites, which are areas contaminated due to the dumping, abandonment, or poor management of hazardous waste.

Whether Sylvia and her brother’s diagnoses were the results of genetic factors, environmental factors or a combination of the two is unknown. What Sylvia did know, though, is that she was going to dedicate herself to helping pancreatic cancer patients realize that, contrary to popular belief, a diagnosis is not a death sentence. It’s a message she delivered as long as she could, and it’s now up to Brenda to continue to spread the word.

Sylvia’s Gratitude

While Sylvia largely attributed being a long-term survivor to her early diagnosis, her daughter believes her mindset also played a big role.

“We asked her to sum up her experience in one word, and that word was ‘gratitude,’” Brenda said. “She exuded gratitude every day of her life, and pancreatic cancer didn’t change that.”

Brenda now runs a Facebook page titled, “Sylvia’s Gratitude,” where she shares memories of her mother, information about upcoming fundraisers, and news about medical advances or other areas of relevance to the pancreatic cancer community. She also continues her volunteer efforts for pancreatic cancer research by assisting with social media efforts, putting together small care packages for patients, and keeping track of important surgery and other dates so she can reach out and offer support when patients need it.

Brenda also shares her mother’s story with those she meets through volunteering, telling them that her mother received her diagnosis soon after attending her youngest son’s wedding. She’d wanted more grandkids, and if she’d followed the path predicted by her doctors, she’d never have met her two granddaughters.

Two months before her death, Sylvia saw one of her grandchildren get married. Two weeks before her passing, she learned she was going to be a great-grandmother. Six months prior to her passing, she also got to meet her great-great niece – who family members named in her honor.

Sylvia and Brenda also caution patients and their family members against putting too much stock in numbers and prognoses. Right around the time Sylvia passed the five-year survivor mark, she began experiencing back and abdomen pain, and medical scans suggested a possible cancer recurrence. Her doctors had warned her that this was common around this time. Instead, the problem wound up being scar tissue that had built up after her Whipple surgery years before.

“For so long, she was fixated on that five-year survival mark,” Brenda said of her mother. “After those five years passed, it’s like her mind gave her permission to feel like a survivor, rather than a patient. That’s when we knew we had to share her story. No cancer patient should have to say, ‘I don’t know anyone who survived that.”