Cholangiocarcinoma is a bile duct cancer that forms in the lining of the Bile Ducts.
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We are here to help you help yourself, so let’s start by learning the basics together

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What is Cholangiocarcinoma

Kol-an-gio-car-ci-noma
listen to pronunciation

Cholangiocarcinoma is a cancer that forms in the lining of the Bile Ducts.

Bile ducts begin in the liver like the source of a river with tributaries that combine into one common duct outside the liver.

This common bile duct delivers bile to the gallbladder & small intestines. (Duodenum)

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Know the primary location 

If the primary tumour is located within the liver region this is referred to as “Intrahepatic“

If the primary tumour is located outside the Liver region this is referred to as “Extrahepatic“

Extrahepatic has two sub-category locations
Perihilar & Distal

Knowing the primary location will help you understand and learn more efficiently.

Your Roadmap & Flashlight

Do what must be done in the order it must be done.

EDUCATE – EQUIP – EMPOWER

Hi there and welcome to CCA Australia.

Although we are Australian and New Zealand centric we take in the complete global view at all levels to ensure we leave no stone unturned and remain current and effective at the coalface of this cancer challenge. We are here to help support your efforts in achieving the best possible outcomes.

We strongly recommend that you immediately form a basic knowledge foundation before you proceed – we are here to help you with this.

It is our goal to help you, help yourself. Knowledge and Sharing are our greatest and most potent resources in succeeding in such challenges, so let’s now move forward together and familiarise ourselves with the CCA Patient Toolkit ~ CCA is the Cholangiocarcinoma abbreviation. 

Regards Steve 
Ps Please join our “Email Updates” this is where we keep you current with what we know, the updates are also a helpful alternative if you do not use Facebook.

What is Cholangiocarcinoma?
Learn more from CCF (USA)

Newly Diagnosed Patient & Caregivers | Research | International Research

What can you do to help yourself?

(1) CCA Patient Toolkit: Ensure you tick off every step, they are what successful patients and their medical teams adhere to.

(2) Surgery: Full resection of the primary tumor provides the greatest curative outcomes, ensure you have fully pursued this option.

(3) Mutations: Your number one priority is to discover your cancer mutation(s).

  • Ensure (Insist) that your biopsy (tissue sample) is IHC tested. An IHC test highlights “Biomarkers” that point to known mutations that may qualify you for immunotherapy or other targeted treatments.
  • Ensure that the IHC test highlights PD-L1, and MSi results, this is important and you should not assume this will be asked for or highlighted. This test is local and takes 3 -5 days.
  • If your IHC test results do not provide an answer, request a full Next Generation Sequencing (NGS) on the same biopsy sample – this will take up to 6 weeks and is commonly referred to as Genomic or Molecular Profiling
Biomarkers point to Mutations

The future of Cancer treatment is treating the actual mutation(s) that is driving the cancer’s growth. Therefore discovering the mutation(s) responsible is paramount to a patient’s outcome. When your Oncologist receives this information it shines a light on how to specifically target, treat and eliminate the mutational culprit (s) and the cancer they create. Without this knowledge, your oncologist will remain in the dark relying on historic first-line treatment options.

PATIENTS: Mutations Matter
HEALTH PROVIDERS: Mutations Matter
ALL CANCERS: Mutations Matter

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.

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.

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

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Have we missed your community?

Email: Steve
Ph: +61415153522
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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.

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’

If you have a success story to share please contact Steve 

Also Visit

Cholangiocarcinoma Foundation (USA)
Newly Diagnosed Patient Page

Update July 2022:
View original post

By Steve Holmes

Improving patient survival outcomes is the only true measure.

I continue to lean into a difficult community cancer challenge in developing a Cholangiocarcinoma-specific focus here in Australia. Cholangiocarcinoma (CCA) has very specific needs at all levels from Patient to Community to Medical providers to Medical Research and the implementation of new curative initiatives. Currently, there is no formal CCA structure in place to support this effort…continue reading

Relevant Documents & Articles

15/12/21: ( Pdf)
Inaugural Australian Cholangiocarcinoma Stakeholders meeting

The Australian Eucalyptus is both unique and inspiring.

There are no other tree species in the world that can produce timber, paper, essential oil, and even honey! The Eucalyptus is among the hardiest trees on the planet, able to biologically adapt to drought conditions, pest infestations, and regrow after fire ~ we are in good company!
Source

Look through the impossible to where it could be

“The Definition of Fiction: Something imagined, a collection of thoughts that form a story not yet real – NOT YET!
YET FICTION ALWAYS PROCEEDS ITS REALITY

Not everything can be measured by the reality of others!

“To Walk on Water you must first believe that it is possible, you have to look through the impossible to where it can be, then take that next step and the one beyond that until the magic of momentum reaches out and engages lifting you up and beyond the now. Transporting you to that place where your dreams can fly free and their visions and aspirations rise up to plan their outward reality. This is how we landed on the moon, and continue to do remarkable things today, that just yesterday were impossible.”

“Hope is real, it is the architect of our dreams, and the stimulator of our innermost ‘Willingness.’ Willingness is our innermost flame of momentum, the builder that builds our dreams. With willingness we have momentum and with momentum, we can do magic. Momentum begins well before it can be seen by others, let it rise up, let it carry you up and without restriction, let it inspire others to do the same. 

That’s my story, my song which began deep within me when I needed it, it helped me sing, it helped me rise above and beyond my conscious measures to become the best I could be, I hope these private words that I have now shared help you find your best beyond the restriction of other people’s perceptions and realities, no matter how well intended.

Sagh

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