PATIENT PERSPECTIVE

CHOLANGIOCARCINOMA AUSTRALASIA
PATIENT| NED | 7 YEARS
CCA Introduction Pack

Mandy Wallace

  • SURGERY:  YES
  • BIOPSY: NO
  • IHC FINDING: NO
  • MOLECULAR PROFILING: NO
  • MUTATIONS: N/A
  • TREATMENT:  Surgery
  • TREATMENT :  6 Weeks Chemotherapy – 5FU with Targeted Radiation
  • TREATMENT: 7 Months Gem/Cis 
  • CURRENT STATUS: NED 7. 5 years
  • YEAR DIAGNOSED: September 2012
  • DIAGNOSIS: Extrahepatic
  • SURGERY:  YES
  • BIOPSY: NO
  • IHC FINDING: NO
  • MOLECULAR PROFILING: NO
  • MUTATIONS: N/A
  • TREATMENT:  Surgery
  • TREATMENT :  6 Weeks Chemotherapy – 5FU with Targeted Radiation
  • TREATMENT: 7 Months Gem/Cis 
  • CURRENT STATUS: NED 7. 5 years

QUESTIONS THAT DEFINE

Describe how your journey began

I woke up on the morning of my 39th birthday with severe pain in my upper abdomen. By lunchtime I had to cancel my birthday party and went to hospital Emergency Department instead. The hospital concluded that I had gallbladder issues, so an ultrasound was scheduled and I was sent home with painkillers to await an ultrasound.

What Medical Advice did you seek ?

Initially it was the emergency room at the hospital. Then the ultrasound which progressed very quickly a CT scan. After the scans I was scheduled to see a liver surgeon for further assessment, where surgery became the option and I was scheduled 1 week later.

How did you receive / deal with your diagnosis

I’m not sure I did ‘deal’ with it at that moment. Things had happened so fast and 2 weeks after my first attack I was in hospital recovering from a huge operation that completely changed my life. It was all a blur, like it wasn’t really happening to me. I think it became more of a reality once I began chemotherapy. that’s when the gravity of this new reality, really began to kick in.

How did you make Decisions

A lot of the early decisions were taken out of my hands. Thankfully I had an incredibly proactive surgical team that made all the right decisions on my behalf. Once the chemotherapy situation presented itself, that’s when I began researching for more answers and relevant information. This search lead me to find the Cholangiocarcinoma Foundation. From there I was able to find information and control the treatments I received.
I learnt that Knowledge is definitely power.

Any unusual or interesting facts?

To begin with, the surgeon thought I had a duplicate gallbladder….he was quite excited as this is very rare. I think he was quite disappointed when he found a dirty rotten tumor instead!

MY HOME

IN THE REAR VISION MIRROR

What could or would you have done differently or better ?

I’m not sure I would do anything different really. I had a great team and I fortunately found the Cholangio foundation very quickly.
I would ask more questions in the initial surgical consultation. It was a bit of a shock to wake up after surgery to realise I had so many missing bits!

Be careful what you let in!

My surgeon told me to go home and live the rest of my life. He’s still surprised I’m still here!

SURGERY REMOVED

  • SURGERY: Roux-en-Y
  • TUMOR REMOVED
  • GALLBLADDER: Removed
  • LIVER: 70%
  • BILE DUCT: Section Removed
  • LYMPH NODES: 5 or 6 removed

TRICKS, TRAPS AND ADVICE

THE TRICKS
  1. Knowledge is power
  2. Friends in the same situation is key to getting through this diagnosis. You do not want to do this alone.
  3. Get a second, third, fourth opinion until you are happy/confident with the surgeon and Oncologist
  4. Find groups to join and find the real statistics.
My Favourite sayings
  1. Pick yourself up bitch, your not done yet!!!!
THE TRAPS
  1. Staying with an Oncologist/team that you are not happy or confident with.
  2. Information Overload: Too much too quick info when researching – especially Dr Google.
  3. Most diagnosis can be very grim, do not lose hope it is definitely there if you remain open to it.
 ADVICE 
  1. Just take it one day at a time
  2. Visit Cholangiocarcinoma groups to join.
  3. NZ Group: CCA NZ Support
  4. NZ / Australia Group: CCA Australasia Support Group
  5. Finding others going through the same things is empowering!
  6. You are not alone!

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