Patient Perspectives: The CCA Journey

At the 2022 Cholangiocarcinoma Foundation annual meeting, 2 patients very eloquently described their respective journeys with cholangiocarcinoma (CCA) and shared their perspectives on how to best manage the disease.

Scott Stennett is a 50-year-old married father of 2 teenagers who live in Toronto. He has battled Crohn’s disease and ulcerative colitis since 1987. He had primary sclerosing cholangitis after 2 bouts of asymptomatic pancreatitis caused by blocked ducts. In 2020, his CA19-9 levels were abnormal and continued to increase, leading to extensive investigations and ultimately a diagnosis of CCA.

Scott started gemcitabine/cisplatin in November 2020. He was recommended for liver transplantation but did not respond to the Mayo protocol as a result of the presence of a large hilar mass and locally enlarged lymph nodes. In May 2021, a Whipple procedure was attempted but aborted when spots were found on the diaphragm. Biomarker analysis of a biopsy of a lesion on the diaphragm failed to find actionable alterations. In May 2021, Scott lobbied aggressively to get Abraxane added to the gemcitabine/cisplatin regimen.

Scott’s journey is a lesson in self-advocacy, in working aggressively to find the right systemic treatment when surgical options do not exist, and in maintaining a positive outlook through it all. In his words: “I had to take matters in my own hands; I pushed my surgeons very aggressively. They look at CCA as palliative because there is no cure systemically.” Scott’s goal was to “buy time, so that there will be more opportunities for the right systemic treatment to materialize.” Importantly, he is “cycling through systemic treatments with the hope to become operable in the future.”

Scott attests to the value of support groups as essential resources for sharing experiences, treatment options, and advice. He advises other patients not to be a martyr when it comes to using palliative care. “I hesitated to take a palliative physician referral, but he helped me with my general health through sleep aids, nutrition support, and pain relief, which helps my body fight the cancer,” Scott said.

Marisa Wilson describes herself as a daughter, mother, grandmother, and friend. She has also been a nurse for 28 years at Johns Hopkins Medical Center as well as a professor at the University of Alabama Birmingham and a health services researcher, writer, and speaker. She was diagnosed with stage 4 metastatic intrahepatic CCA and is receiving care at Johns Hopkins Medical Center.

Marisa thinks of herself “not as someone who gives up easily, but as someone who is not totally sure of her future, so I live every day as I can,” she said. “I see myself as a chess player playing against the master chess player, and I don’t know which way to really move the pieces.”

However, Marisa has decided to seize the opportunities presented to her to learn, educate, and advocate. “I am learning every day,” she said. “I use what I’ve learned to educate others, and I plan to use the platforms that I have and I am not afraid to advocate for a cause.” Marisa is planning to advocate at the 2022 Summer Institute in Nursing Informatics Conference and through the American Academy of Nursing “for nurses everywhere to be much more engaged in personalized, patient-centered care.” She is also engaged in developing resources for the Facebook group Cholangiocarcinoma Warriors.

We hope that stories such as Scott’s and Marisa’s inspire other patients with CCA!