The Lynx Group
Cholangiocarcinoma News

Where There Is Hope

December 2020, Vol 1, No 3
Laura R. Hnat
Vice President & Chief Development Officer
Cholangiocarcinoma Foundation

“You have cancer.” These are the 3 little words that everyone dreads hearing and that doctors wish they never had to utter. Yet according to the American Cancer Society, an estimated 1.8 million people will be diagnosed with cancer in the United States this year, and more than 600,000 people will die of it.

But “you have cancer” are not the most frightening words that a patient with cancer hears. That designation belongs to the phase, “Go home and get your affairs in order.”

Cholangiocarcinoma (CCA) is a particularly insidious cancer. Because the average age of CCA diagnosis is 70 years or older, often occurring as a late-stage disease, the average 5-year survival rate is less than 10%, and therefore too many patients with CCA receive this dire advice.

This situation leads to the question: How can a cancer care team provide hope in the face of such discouraging statistics? The answer likely lies within the definition of hope itself.

Hope is the optimistic expectation that something good will ultimately happen. It is not simply a suspension of logical thought. Rather, it is the deep-seeded desire for a better outcome and the trust that there is a path forward. Research has shown that patients can receive positive medical benefits from having a hopeful attitude.

Science has shown that hope is not just the purview of patients. Providers and care teams can expand or threaten a patient’s feeling of hope.

A study published in the Journal of Clinical Oncology reports that a patient’s feeling of hopefulness is most often influenced by how providers communicate their understanding of the patient’s particular disease and his or her knowledge of the latest treatments.1

Does hope affect a patient’s likelihood of survival? Although there may not be a direct correlation between hope and survival rates, we do know that hope has many positive health benefits. These benefits include the willingness to adhere to treatment regimens, reduced stress, and improved quality of life.

At the Cholangiocarcinoma Foundation (CCF), we see many reasons for hope. From an increased disease awareness, to new treatment options currently in development, to the dogged determination of researchers seeking a cure, there are many reasons for us to have hope. Perhaps none is more poignant than the stories of long-term survivors of this deadly cancer.

In 2016, Ellyn Goodrich was living on a remote island in the Pacific Northwest, when she received her diagnosis of intrahepatic CCA. She was prescribed the standard of care consisting of 6 months of chemotherapy with a cocktail of gemcitabine and cisplatin, which, surprisingly, she was able to receive right on the island through an oncologist who flew in once a week. After a few months of having no evidence of disease, a routine CT scan showed that the cancer had returned, and Ellyn had to navigate travel to the mainland for surgery and treatment, while also trying to care for her family.

After the recurrence of her cancer, Ellyn realized that she needed to see a specialist. “He offered an aggressive approach, shared that science was leading the way in new treatments, and helped me find my voice. He didn’t sugarcoat my diagnosis, but he offered hope,” she said.

“The Cholangiocarcinoma Foundation stresses the importance of finding care at a major cancer center, and I believe that having quality medical attention is so important. Trusting my team brings hope, and staying informed does, as well. Again, knowledge is power, and that translates to hope, in my mind,” Ellyn added.

Tom Leitzke was 58 years old and living as an expatriate in Japan, managing global operations for a publicly traded robotics company, when he was diagnosed with stage IIIB perihilar CCA in 2007. Again, the statistics did not look good. Tom’s prognosis was 7 months of survival at the most, and if he somehow survived, he would most likely never be able to work again. Despite this, Tom was determined and did not lose hope.

Tom explained, “Hope is necessary for the will to follow. Overall, keeping hope, gratitude, passion, and acceptance at the forefront of my medical recovery was probably the most important thing for me. I am also blessed to have an entire medical team I trust, respect, and honor. It is my responsibility to own medical decisions impacting my health, and I chose my doctors accordingly.”

Thirteen years have passed since his initial diagnosis. Tom remains optimistic. “Life is a blessing,” he said. “I am thankful to be alive, to share my cancer experiences with family, friends, and others impacted by this disease. I am grateful for my life journey, and where I am today. What sometimes seems like an end is a new beginning. It was for me, and it starts with hope.”

Although the long-term survival rates for patients with CCA remain low, we at CCF frequently hear stories like Ellyn’s and Tom’s journeys.

Eleven years ago, our own Director of Patient Advocacy, Melinda Bachini, was advised to “go home and get her affairs in order.”

Today, Melinda devotes her days to educating and encouraging other patients who have received the same prognosis. She helps patients and healthcare providers see how hope can be nurtured through education and communication. Melinda believes that “patients and providers are partners in hope.”


  1. Hagerty RG, Butow PN, Ellis PM, et al. Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. J Clin Oncol. 2005;23:1278-1288. Erratum in: J Clin Oncol. 2005;23:3652.

Related Items

International Cholangiocarcinoma Patient Registry Accelerates and Supports CCA Research
September 2022, Vol 3, No 3
The Cholangiocarcinoma Foundation hosts a patient registry, the International Cholangiocarcinoma Patient Registry (ICPR), that is a global database comprising patient medical histories and treatments for cholangiocarcinoma (CCA).
Clinical Trial Enrollment Challenges for Patients with Cholangiocarcinoma
By Reham Abdel-Wahab, MD, PhD; Samantha Pear
June/July 2022, Vol 3, No 2
There is a desperate need for patients with CCA to gain access to clinical trials to help improve survival.
The Cholangiocarcinoma Foundation’s Patient Advocacy Initiatives
March 2022, Vol 3, No 1
At the 2022 Cholangiocarcinoma Foundation (CCF) Annual Conference on February 22-25, Melinda Bachini, Director of Advocacy of CCF, provided an update about the foundation’s advocacy and patient support initiatives. The goal of the CCF’s advocacy group is to provide educational and emotional support for the cholangiocarcinoma (CCA) community of patients and caregivers, and to empower them with the knowledge and guidance needed to self-advocate.
The International Cholangiocarcinoma Research Network: Educational and Research Achievements
By Reham Abdel-Wahab, MD, PhD
December 2021, Vol 2, No 4
In 2015, the Cholangiocarcinoma Foundation (CCF) launched the International Cholangiocarcinoma Research Network (ICRN). This network is a global collaborative of clinicians, researchers, and scientists from leading academic medical centers and research institutions working together to improve the prevention, early detection, treatment, and prognosis of cholangiocarcinoma (CCA).
New ICD-11 Codes for Cholangiocarcinoma
December 2021, Vol 2, No 4
The Cholangiocarcinoma Foundation (CCF) is encouraging healthcare professionals to support the adoption of the new International Classification of Diseases, 11th Revision (ICD-11), and its role in creating more robust epidemiological data for cholangio­carcinoma (CCA).
Navigating Compassionate Use Options for Your Patients with Cholangiocarcinoma
By Melinda Bachini
September/October 2021, Vol 2, No 3
I believe that the most powerful and positive force in medicine is that of a self-advocating patient. At the Cholangiocarcinoma Foundation, we strive to connect, educate, and empower patients with cholangiocarcinoma (CCA) to partner with their care team in navigating the course of their treatment. However, we understand that the treatment options are extremely limited for many patients with CCA.
A Watershed Moment for the Cholangiocarcinoma Community
By Stacie C. Lindsey
June/July 2021, Vol 2, No 2
In an article published last year in CCA News, I shared the Cholangiocarcinoma Foundation (CCF)’s philosophy on taking risks and leveraging collaboration over competition. The CCF was nearing its 15th anniversary, and the FDA had recently approved pemigatinib (Pemazyre), the first targeted therapy approved for cholangiocarcinoma (CCA).
The Urgent Need to Raise Awareness to Cholangiocarcinoma and Fund Research
By Teresa Delcorso-Ellmann
March 2021, Vol 2, No 1
I first learned of cholangiocarcinoma (CCA) in 2015, when my husband Steve was diagnosed with stage IV inoperable intrahepatic CCA and was given a prognosis of less than a year to live. He defied the prognosis and survived for 40 months, until his death in March 2019. When he was diagnosed, neither one of us had ever heard the word “cholangiocarcinoma” and did not know it was possible to have cancer in the bile duct. We both knew that a diagnosis of other gastrointestinal (GI) cancers, such as pancreatic or colon cancer, could be catastrophic and were stunned to realize that the treatment options and outcomes for patients with CCA were the most dismal of all GI cancers.
Leading the Way to a Paradigm Shift in Cholangiocarcinoma: The International Cholangiocarcinoma Research Network
By Nilo Azad, MD; Mitesh J. Borad, MD
October 2020, Vol 1, No 2
In the past decade, there has been a sea change in awareness about cholangiocarcinoma (CCA). However, the standard of care has remained unchanged for more than 10 years. This year, the FDA approved a new targeted therapy, pemigatinib, which became a treatment option for approximately 10% to 15% of patients with CCA. The process of drug discovery, as well as changes in the standard of care, are becoming increasingly reliant on collaborative approaches that leverage the expertise and resources of a wide range of partners to strengthen the tools and knowledge that advance the research objectives of all stakeholders.
Taking Chances to Drive Innovation in Cholangiocarcinoma Therapy
By Stacie C. Lindsey
August 2020, Vol 1, No 1
The COVID-19 pandemic has changed the way we do business, the way we interact with one another, and other tangible aspects of our work and personal lives. The pandemic has also provided many of us with much-needed time for personal reflection. Often, when we have the opportunity to take a step back, or in this case when we are forced to step back, the result of our thoughtful reflection can be an opportunity to slingshot forward.

Subscribe Today!

To sign up for our newsletter or print publications, please enter your contact information below.

I'd like to receive: