Newly Diagnosed

Patients

Turning Today’s Science into Today’s Patient Survival:

At the Cholangiocarcinoma Foundation Australia, we are committed to transforming cutting-edge medical research into tangible benefits for patients diagnosed with cholangiocarcinoma. By integrating innate human resilience attributes, patient insights, and breakthrough medical advancements with the existing standard of care model, we are better positioned to provide a comprehensive ‘Standard of Response’ model.

Resources such as the Patient Navigator Journals reflect this transformation and are tailored to better equip and empower our patients to more effectively respond to and survive their diagnosis. These journals ensure that today’s research directly enhances each patient’s capacity to thrive.

Our aim is for every newly diagnosed patient, along with their GP, surgeon, and oncologist, to receive a journal. This ensures that all parties are aligned and informed, enhancing the patient’s ability to more effectively respond and survive their diagnosis.

Know Your Path: Build Your Team

We travel a road in steps, the navigator journals provide the roadmap to travel the Cholangiocarcinoma road.

As a newly diagnosed patient, “we do not know what you do not know – but must,“ this is what the Patient  Navigator Journals help with, they provide a simplified knowledge bridge between the science, medical and patient – a pathway beyond the diagnosis.

To effectively succeed we must first understand the diagnosis we face. Understanding cancer increases our engagement and effective engagement increases our chances of success.

Its A Process

The Patient Navigator Journals provide a clear and comprehensive response process to a Cholangiocarcinoma diagnosis. This methodical process blends and integrates cutting-edge medical research, with patient insights, enduring resilience attributes, and standard-of-care practices to create a more complete and comprehensive response process to a Cholangiocarcinoma diagnosis.

Dismantling The Diagnosis

By following a process we dismantle the diagnosis stripping cholangio of its reputational packaging, to see it as it is, not as we fear it is. This is how we prepare ourselves to more effectively respond. It is also how we free ourselves from uninvited speculation and opinion.

Breaking Down The Challenge

The Process methodically breaks down the challenge into small, manageable pieces. It keeps you focused on conquering each step in front of you in the moment – by focusing on each step and doing it well, we disempower the many distractions posed by the enormity of the challenge itself. Each step seamlessly follows the next wearing down the cholangio’s defences until they are no more – until cancer is no more – that is our North Star we become empowered and Cholangio disempowered.

Overview of Steps


Click image to enlarge

Now It’s Up To You

Your Next tasks:

  • Order your free journal by clicking this link Patient  Navigator Journals. Your journal will also provides access to a suite of digital toolkits – ‘Navigator’, ‘Mutational Toolkit’, and ‘Questions Toolkit.’
  • Complete the To-Do list below. Good luck and remember we are here to help you achieve your best outcomes.

While You Wait for Your Journal to Arrive:
Begin taking crucial steps towards becoming better equipped and empowered to respond your diagnosis. Action is common place, effective action is not. Below is a list of important and effective actions that you can do right now:

Download the Web-App Version of the Journal

  1. Follow the Web-App’s Steps:
    • Know Your Pathway: As a newly diagnosed patient, you do not know what you do not know, yet must as quickly as possible. Understanding what to do next is essential to an effective response.
    • Build Your Team: To build a strong, effective team around you, it’s crucial to understand the qualities required of each medical professional. Surround yourself with individuals who possess both “great character and talent”—one cannot exist without the other.
  2. Begin Learning the Basics of Cholangiocarcinoma:
    • Understanding Cholangio will increase your effective engagement, the actions you take, improving your outcomes.
  3. Where Is Your Primary Tumour Located?:
    • Knowing where your tumour is located will influence treatment options and strategies.
  4. Know Your Surgery Options:
    • Surgery as a Curative Option: Surgery is the only curative option for cholangiocarcinoma. Understanding surgical options and eligibility is crucial. Equally important is knowing why surgery may not be possible and exploring ways to make it viable.
    • Leave No Stone Unturned: Fully explore and pursue surgical all options. Seeking second and third opinions is not only common but provides fresh eyes and perspectives.
    • If Surgery is not an option can a biopsy be performed to test for biomarkers?
  5. Join Our Community:
    • Introduce Yourself: Start by saying hi and sharing your diagnosis. Ask for advice on medical professionals in your location. This is how we all begin—it’s the fastest way to learn from those just like you.
    • Supportive Environment: The group and its members have a very constructive approach to helping each other. It’s also a safe place to unload your feelings and frustrations.
  6. Ask for Help and Guidance:

Let’s Get You Started

Taking these steps will prepare you for the challenges ahead and set a strong foundation for your journey. Remember, you’re not alone, and every bit of knowledge and preparation can make a significant difference.

Empower Yourself: Download the web-app, start your journey, and equip yourself with the knowledge and support you need.

Resource Links 

Cholangio Challenger Profile

Cholangio Challengers is a vibrant community hub designed for patients, caregivers, supporters, and families impacted by cholangiocarcinoma. This platform enables you to create and share profiles with your loved ones, colleagues, and the broader community, fostering a united and constructive response to this challenging disease. By aligning your personal challenges with our foundation’s mission and resources, we can collectively empower our patients and caregivers with the latest scientific research, medical advancements, and effective response solutions to enhance survival.

Join us and be part of our empowered community response, where today’s science actively supports your fight for survival.

Stay Informed with Our Newsletter

Keeping our website updated is a priority, but news moves fast. By subscribing to our newsletter, you’ll receive timely updates that not only keep you informed but also equip and empower you in your fight against cholangiocarcinoma. Join now to ensure you never miss out on important news.