Nancy's story
From Hopeless to Hopeful: Nancy’s Bile Duct Cancer Journey
“After I got home, I thought, ‘What’s the point? I’m going to go to hospice.’ I just felt that it was hopeless. They waited too long. It’s too late to do anything.”In 2023, Nancy, an 80-year-old Sheboygan resident, had just been told she had stage 4 cholangiocarcinoma (bile duct cancer) and there was no cure.
She had spent the previous eight months trying to figure out why she had so much abdominal pain – something her general practitioner had chalked up to acid reflux. No amount of Prilosec or Tums eased the pain, which began waking her up at night. Eventually, she received a referral for a stomach scope.
“The doctor couldn’t do it because my heart rate dropped to 32,” Nancy said. “He told me I needed to get a pacemaker before he could do the stomach scope.”
So, Nancy went down to Milwaukee to have a pacemaker put in.
“I got the pacemaker put in and they took an X-Ray,” she said. “A wire had come loose, so I had to stay overnight, and they had to do it again the next day.”
When she was finally able to have the scope done at HSHS St. Nicholas Hospital, she learned it was a malignant tumor within and surrounding her liver that had been keeping her up at night. The tumor was about 3.5 inches by 2.5 inches – one third the size of her liver – and it was beginning to impede other organs. For someone her age, a tumor that large comes with a prognosis of less than three months without treatment; maybe five months with treatment if the treatment didn’t hurt her more than help her. Nancy’s journal entry from that day – June 9, 2023 – was brief: All I heard was “Stage 4 – no cure.”
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Finding hope in the care team
Nancy and her husband, John, were devastated.“I was referred to Dr. David Groteluschen, but I was prepared to go into hospice,” she said.
Nancy and John met with Dr. Groteluschen, a medical oncologist at the HSHS St. Vincent Hospital Cancer Centers at HSHS St. Nicholas Hospital, just five minutes from their home.
“The first thing Dr. Groteluschen said to us was, ‘Don’t worry about it. You’re in our care now, we’ve got you,’” John said.
“Yeah, he said ‘I’m your doctor for everything. Anything that comes up, I’m your doctor,’” Nancy remembered.
Those reassuring words meant everything. Despite the size and aggressive nature of her tumor, Nancy began to believe she still had a chance. As they discussed treatment options, she asked about hospice, but Dr. Groteluschen helped her realize she wasn’t ready to stop fighting.
“I have family that I love. I gotta fight this,” she remembers thinking. “Why would I leave my loved ones? Why would I just give up? I just didn’t want to do that. This is the battle of my life.”
Battling bile duct cancer with chemotherapy and immunotherapy
Nancy’s first treatments included two powerful chemotherapy drugs and one immunotherapy drug. The side effects were brutal.“I got so sick I couldn’t walk or eat. I laid in bed all day for two weeks,” she said.
Then she was hospitalized for five days with blood clots and pneumonia that led to sepsis. Because she had been bedridden for so long, she had to spend eight weeks in a nursing home to strengthen her legs again so she could walk.
“After eight weeks of no treatment for my cancer, I worried about how big that thing was getting,” she said.
Fortunately, the tumor had shrunk. Nancy told Dr. Groteluschen she only wanted immunotherapy moving forward, no chemo. They tried that until December 2023, but it wasn’t cutting it.
“The immunotherapy shrunk the tumor, but it didn’t take care of the new cancer cells,” she said. “So, I had to go back on chemo.”
This time, Dr. Groteluschen and Nancy decided to try a different kind of chemo and a lower dosage. After eight months, Nancy’s cancer was under control enough to start a maintenance chemo regimen in September 2024. Today, she continues to have regular scans to monitor her tumor.
“46 hours, twice a month,” Nancy said. “I come in to have them put the chemo pump on and I take it home in a pouch.”
Nancy began seeing Dr. Evan Wenig, another medical oncologist in the cancer center at HSHS St. Nicholas Hospital, who continues her care in the same manner as Dr. Groteluschen.
“When he showed me this last scan he said, ‘It shrunk!’ and he gave me a high five,” Nancy said with a smile.
Living with her cancer and gratitude
Nancy has experienced hearing loss as a long-term side effect of chemotherapy, but with hearing aids she’s able to enjoy life – and she’s glad she chose to fight over these past two years.“It’s worth the battle,” she said. “I mean, what else are you gonna do – wait to die? You gotta just have hope and faith.”
“And don’t forget to be grateful,” John added.
Nancy has returned to one of her favorite hobbies — painting rocks — and sprinkles them around Sheboygan to brighten others’ days.
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“I started bringing them to the clinic with me, I leave stones at the grocery stores,” she said. “One of the nurses here asked me to make one that says ‘Nurses Rock.’”
She also enjoys monthly coffee meetups with friends and weekly lunch dates with one of her grandsons, who is studying to be a nurse.
“He said, ‘I’m proud of you, Grandma, for fighting the cancer,’” Nancy said with a tear in her eye. “I just have so much gratitude. I can’t believe I’ve come this far.”
Nancy and John credit the HSHS St. Vincent Hospital Cancer Centers team at HSHS St. Nicholas Hospital for helping them realize her cancer diagnosis didn’t have to be the end of her life.
“All the doctors and nurses here care,” John said. “And that’s what you need – somebody who cares.”
“You can see they want to be here. You can just tell that they love their job and they want to be here. It shows in the way they treat people,” Nancy said.
Click here for more information about the HSHS St. Vincent Hospital Cancer Centers.