Patients cannot wait for science to catch up; instead, it is essential that we come together

Steve Holmes
Get Cancer Ready
Helping bridge the cancer information abyss to the pathway beyond the diagnosis.
Please drop me a comment in the comments section below.

Introduction

Helping patients help themselves is a highly undervalued resource in the fight against cancer.

Cancer patient communities provide a safe space for individuals with the same diagnosis to share experiences and learn about treatments and clinical trials. Support groups offer comfort and understanding, while also providing a collective goal of focus and effort to those fighting the same disease.

Let’s explore the impact of community and take a closer look at patients diagnosed with Cholangiocarcinoma in Australia.

Cholangiocarcinoma is a cancer of the bile ducts.

Statistics

In 2020, Australia reported 150,000 new cases of cancer and 50,000 deaths, making cancer the leading cause of death. GI Cancers Australia reports that there are approximately 1300 new Cholangiocarcinoma cases per year including gallbladder cases; a cancer that accounts for less than 3% of all cancers diagnosed in Australia and appears to be on the rise.

Responding to the statistics

This minuscule figure carries a devastating impact; with less than 8% of patients surviving 5 years and less than 1% when ‘Stage 4’.

To combat these dire numbers, patients must become better equipped and empowered to respond.

Cholangiocarcinoma patients cannot simply wait for science to catch up; instead, it is essential that we come together and build highly effective communities that empower the individual patient’s needs in real-time.

Cholangiocarcinoma Community Australia – a patient and caregiver community
This article aims to highlight the impact of having a strong cholangiocarcinoma patient community and how it could improve the current statistics here in Australia.

At a glance, this is what our Australian group offers

A safe space to help newly diagnosed patients

• Know what must be known – We do not know what we do not know – but must.
• Conduit to connect and share with other patients and caregivers
• Real-time learning and access to how other patients are progressing

Many hesitate to join

• Who can blame them, as that would be the final admission of “you’ve got cancer” the very words that you do not want to be associated with your name.
• Many patients fear joining the group because they do not want to be placed in an environment meant for cancer patients.
• Some patients are concerned about privacy breaches, such as their diagnosis or treatment plan being shared or made public.
• Patients who were just yesterday healthy people feel ashamed or stigmatised and can be reluctant to join due to fear of judgement.
• Additionally, they are often dealing with emotional vulnerability, like fear, anxiety, and depression, and worry about sharing in a group they don’t know well.

BUT joining could save your life

When it comes to a cholangiocarcinoma diagnosis, with such slim margins in 5-year survival, there is a greater benefit in connecting with other patients (or caregivers) as soon after being diagnosed as possible.

Members of the Cholangiocarcinoma Australia Community can quickly gain knowledge, experience, and wisdom from those sharing the exact same diagnosis or from those who have successfully navigated their way back to good health.

The Cholangiocarcinoma Facebook community provides a bridge across the cancer abyss, lighting the pathway beyond the diagnosis.

I believe as a group we can do better

Our Cholangiocarcinoma Australia Community continues to become more effective for those newly diagnosed with this cancer not only through the camaraderie and generosity of human nature but also the fast-increasing knowledge and new treatment opportunities.

Did you know that Cholangiocarcinoma has one of the highest rates of actionable mutation targets? that means potentially more treatment opportunities.

As a group, we now benefit from the support of Cholangiocarcinoma Foundation Australia, with its affiliations to Cholangiocarcinoma Foundation New Zealand and Cholangiocarcinoma Foundation USA.

This month of February is Cholangiocarcinoma month, if you are reading this and are impacted by a cholangiocarcinoma diagnosis, please join our group.

Steve
My Patient Story