You’ve Just Been Diagnosed.
Here’s Your System. 

You didn’t plan for this. But now you’re here.

What you do in the next few days will shape everything that follows.

This page isn’t here to explain everything.
It’s here to show you the steps that matter — now.
Five moves. One outcome:

Momentum, clarity, survival.

Learn to Row

We’re in the same boat — you and I.
Some know how to row. Some don’t — yet.

Those who can row must teach.
Those who can’t — must learn.

You don’t need to be perfect.
You just need to row.

And keep rowing — until you find our rhythm.
That rhythm will carry you.
It will strengthen you.
And it will strengthen those who row with you.

That’s how we lead
That’s How We Win — together.

Your 5-Step Starting Point

Step 1. Order Your Navigator Journal

Order Your Free Patient Navigator Journal
The Journal turns chaos into clarity.
It breaks down the diagnosis into steps, and helps you act — not react.

Your order confirmation email will include instant access to the digital version — so you can start right away.
You can begin while the printed copy is on its way.

➤ ORDER YOUR FREE JOURNAL

Step 2. Lived Experience

Don’t go alone.

Connect with people who’ve lived it. This is your fastest way to learn.
We have private online Facebook groups that include live sessions to gain insight, clarity, and support — without the noise.

Attend live events, expert talks, and group discussions

➤ PATIENT & CAREGIVERS

➤ ‍‍CAREGIVERS ONLY GROUP

➤ PATIENT & CAREGIVER PROFILES
Write your story, create updates – Share your story

Need help? Claire: 0415 153 522 | Jill: 0418 799 926

Step 3. Patient-Endorsed Medical Professionals

This list has been carefully assembled based on patient endorsements—real experiences from those who have walked this path.

Expertise in cholangiocarcinoma isn’t optional—it’s essential.
Having the right medical team isn’t just a choice; it’s a life-or-death decision.

This is an initiative undertaken by a team of patients and caregivers. We are still working on building this list, we will have this available soon.

Step 4. Talk to a Mentor

Speak to a Mentor Who’s Walked Your Path
You don’t have to figure it all out alone.
We’ll connect you with a patient or caregiver who’s already been there.

We’ll do our best to find someone close in diagnosis or location.

✔ Lived experience
✔ Personal insight
✔ Practical support

➤ VISIT MENTOR PAGE

Step 5. Join Updates

Email: Key updates, research, and campaign news focused on bile health and GI cancers across Australia.
Stay current. Stay connected. Stay effective.

➤ SIGN UP

Common Mistakes To Avoid

Most patients don’t know these are mistakes — until it’s too late.

  • Choosing doctors without high-volume cholangiocarcinoma experience
  • Not seeking 2nd or 3rd surgical opinions — especially after being told it’s “inoperable”
  • Delaying surgery discussions with a high-flow CCA surgeon
  • Letting the MDT decide if surgery is possible — CCA demands a face-to-face discussion with a CCA-specific surgeon
  • If surgery isn’t possible: ask the next question — how can it become possible? What would that pathway look like? What would I need to do?
  • Not insisting on genomic profiling at the point of diagnosis
  • Not requesting or understanding the full IHC (pathology) report from your ERCP biopsy — that includes PD-L1, MSI, and dMMR status, which can directly provide knowledge on immunotherapy eligibility
  • Falling into the “wait and see” trap
  • Not journaling symptoms, blood results, and questions
  • Letting fear lead decisions — delaying smart action

Emotional & Cognitive Pitfalls to Avoid

These aren’t medical mistakes — they’re mindset traps that slow everything down.

  • Don’t assume — always confirm
  • Don’t try to understand everything at once
  • Don’t isolate — stay connected
  • Don’t delay asking for help
  • Don’t take advice from people who haven’t lived it
  • Don’t blindly trust Google — not all info is real
  • Don’t leave your caregiver out — they’re critical

This cancer demands clarity. These moves protect it.