A Centralised Knowledge Hub

By Patients & Caregivers for Patients & Caregivers

A Centralised Knowledge Hub
by Patients and Caregivers for Patients and Caregivers.

We give ‘Hope’ its first plan

A roadmap to best outcomes from day one.

EDUCATE – EQUIP – EMPOWER

Hi there,
We are here to help support your efforts in achieving the best possible outcomes.

Please ensure that you begin with the Patient Intro Kit, as you will need to form a basic information foundation before you proceed. This is important, even if you are not so inclined, as it will improve your decision-making ability and restore some vitally lost control over your future outcomes.

What is CCA Australia?

Centralise – Simplify – Connect
A centralised Cholangiocarcinoma Community and knowledge Hub by Patients and Caregivers for Patients and Caregivers.

Patient Literacy and Enlightenment?

A grassroots patient-up initiative, CCA Australia’s “First-line” effort is to Educate, Equip and Empower the Newly Diagnosed Patient and Caregiver with highly Targeted & Current Information that gives them a starting point to best outcomes.

How do we do this/help you?
  1. CCA Australia is built around a “Road Map to Best Outcomes” model.
  2. CCA-specific “Intro” & “Patient Toolkit” is central to the Road Map Model
  3. We connect you with your specific peer groups and other relevant connections.
  4. We centralise, simplify and distill the collective knowledge, information & wisdom of successful Patients and Caregivers that have been before you.
  5. Deliver “Todays” most current breakthrough information “Today”
  6. Continue to find new initiatives that improve Patient Empowerment through awareness and implementation of what is learned.
Our biggest focus
  1. Ensure all Newly Diagnosed Patients and their Caregivers receive a CCA Australia Patient Intro Kit at the point of diagnosis no later
  2. There are many breakthrough medical events occurring but information channels to the Newly Diagnosed Patient remain clogged and disenfranchised. We are focused on providing a resourceful information conduit that delivers ‘Todays’ breakthroughs ‘Today’ which in itself will increase much-improved patient outcomes.
Key milestone achievements to date
  1. CCA specific digital Intro Kit 
  2. CCA Specific digital Patient Toolkit
  3. Physical Intro Kit & Patient Toolkit Notebooks are now in design mode.
  4. Centralised Knowledge Resource
  5. Australian and Globally Connected CCA Community
  6. Framework for “Cholangiocarcinoma Foundation Australia
  7. Patient Mentoring (AU, NZ & Global)
CCA Australia is Globally Connected

Key connections/Associations
See all CCA Global Connections on home page 

  1. Cholangiocarcinoma Foundation (USA)
  2. CCF 2021 Sub Steering  Committee
  3. CCF Conference Salt Lake City
  4. CCA NZ
  5. AMMF UK
How can you help us?

The People Resource is the X-factor in any successful human outcome. CCA Australia needs people of Character, Talent, and Connection at the centre of our initiative and effort, people who help transition CCA to the next level of reality – A reality and effort that can be measured and accountable in actual lives saved – not dollars raised.

Patients are dying too soon or needlessly from a lack of specific and relevant information at the time of diagnosis. It is our intention to change this “lack” and ensure every frontline medical provider delivers a CCA-Specific intro Kit to the Newly Diagnosed patient at the point of diagnosis no later

CCA Intro Kit
Patient Toolkit
Cholangio 101
Testing 101
Treatments 101
Clinical Trials
Have we missed your community?

Email: Steve
Ph: +61415153522
FB Messenger

The Globally Connected Patient and Caregiver Community is a Collective of peer-to-peer Knowledge, Experience, and Wisdom. Joining a community of your peers is one of the most significant resources you will have in your toolkit.

Current list of communities
CCA Australia
CCA Support NZ
CCA Awareness NZ
CCF USA
International CCA Network
Craine’s Cholangiocarcinoma Crew
CCA Warriors USA
CCA Immuno & Targeted USA
AMMF UK
CCA Support UK & Europe
European Network
Global CCA ALLIANCE UK
The Bili Profect USA
Bile Duct Awareness Group USA
Gallbladder & Bile Duct Support USA
Gallbladder & Bile Duct Awareness USA
Tan Angels 4Ever USA

We Need Caregiver & Patient Mentors

Could you help? if so call Steve +61 415 153 522

Australia/NZ Mentors and Advocates

We are available to help where we can. Connecting, Sharing, and Asking Questions is a very healthy start.

Upper GI Cancer Registry
Pancare
Rare Cancers

The future of success in treating cancer is to identify and eliminate the mutations that are driving the growth. 

Videos created by Cholangiocarcinoma.org

For Patients
For Health Providers
For other Cancer types

Many cancer deaths are caused when cancer moves from the original tumor and spreads to other tissues and organs. This is called metastatic cancer. This animation shows how cancer cells travel from the place in the body where they first formed to other parts of the body.

The results of diagnostic and staging tests are used to find out if cancer cells have spread.

The process used to find out if cancer has spread to other parts of the body is called staging. For bile duct cancer, the information gathered from tests and procedures is used to plan treatment, including whether the tumor can be removed by surgery.

There are three ways that cancer spreads in the body.

Cancer can spread through tissue, the lymph system, and the blood:

  • Tissue. Cancer spreads from where it began by growing into nearby areas.
  • Lymph system. Cancer spreads from where it began by getting into the lymph system. Cancer travels through the lymph vessels to other parts of the body.
  • Blood. The cancer spreads from where it began by getting into the blood. The cancer travels through the blood vessels to other parts of the body.
Cancer may spread from where it began to other parts of the body.

When cancer spreads to another part of the body, it is called metastasis. Cancer cells break away from where they began (the primary tumor) and travel through the lymph system or blood.

  • Lymph system. Cancer gets into the lymph system, travels through the lymph vessels, and forms a tumor (metastatic tumor) in another part of the body.
  • Blood. Cancer gets into the blood, travels through the blood vessels, and forms a tumor (metastatic tumor) in another part of the body.

The metastatic tumor is the same type of cancer as the primary tumor. For example, if bile duct cancer spreads to the liver, the cancer cells in the liver are actually bile duct cancer cells. The disease is metastatic bile duct cancer, not liver cancer.

We have begun building a register of CCA recommended Surgeons and Oncologists

This list is generated by Patient & Caregiver recommendations.

We have a survey running on our Facebook group to collect this information. The list will hopefully be available in early 2022.

For Newly Diagnosed Patients needing information on an immediate basis please ask for recommendations on our group chat /groups/cholangiocarcinomaaustralasia

Regards Steve
+61415153522
steve@cholangiocarcinoma.com.au

NED (No Evidence of Disease) | Complete Remission

Is this you? Please share your story
steve@cholangiocarcinoma.com.au

Patients that had
Chemotherapy + Surgery + Immunotherapy and now ‘NED’
Patients that had
Chemotherapy + Immunotherapy only (ie no surgery) and now ‘NED’
Patients that had
Surgery + Chemotherapy and now ‘NED’
Patients that had a
Liver Transplant with or without Chemotherapy and now ‘NED’
Other Success Stories

View Cholangiocarcinoma Foundation (USA) Success stories

Is this you? please contact Steve 

Looking through the impossible.

“To Walk on Water you must first believe that it is possible, you have to look through the impossibility to where it can be possible. Looking through allows our possibilities to rise up and create the reality, this is how mankind landed on the moon, and how we continue to do remarkable things today that just yesterday were impossible fictions. Necessity and Willingness provide the ‘Looking Glass’ all we have to do is look through it and make that next step”

Anything is possible.

“Anything and everything is always possible as long as I remain open to it. This belief has always allowed my willingness to rise up from deep within, a bright beacon so that ‘opportunity’ and ‘good fortune’ can always find their way back to me. There have been times when this was all I had left in the tank.”

“My reality is mine and Your reality is yours – understanding this distinction has influenced my outcomes.
Steve Holmes