Questions empower your decision making and outcomes; Know what questions should be asked in the order they should be asked

CCF Australia

CCA Questions Toolkit

Know what Questions to Ask
EDUCATE – EQUIP – EMPOWER

Questions empower learning

Questions are a very important way of engaging and understanding the diagnosis and becoming more confident in decision-making.  It will almost always feel difficult, to begin with. Start with an easy question and move forward from there, you will find it lifts your confidence and sense of control.

A Pathway to better decision making

Being an informed patient means you understand the information in a way that you can proactively act on it to make better quality decisions. This is what it means to be an “Empowered Patient.” Follow the content below, it is sequential and will help you become better informed. Understanding this sequence will provide you with a significant advantage.

  1. DNA: We are all individually uniquely DNA coded. This makes us – us
  2. DNA Replication: Our DNA code is in continuous replication
  3. DNA Mistakes: Replication mistakes are common, also environmental (epigenetic) influences like the sun, chemicals, and smoking create mistakes in our DNA sequence.
  4. DNA Spell Checker:  The immune system acts as a regulatory force, with mechanisms including DNA spell checking to repair or eliminate cells with mistakes. It also signals for repair, elimination, or cessation of attacks.
  5. Unrepaired Mistakes: Sometimes the Immune system can miss DNA mistakes, thus unrepaired mistakes or bad cells remain and continue to grow and multiply unchecked.
  6. Mutations: Unrepaired mistakes can lead to genetic mutations (tumours) and some become cancers.
  7. New technology detects mistakes in DNA with tests like immunohistochemical analysis and molecular profiling;
  8. IHC (Immunohistochemistry) is a fast and efficient laboratory technique that uses chemical staining containing antibodies to detect and display specific protein abnormalities in tissue samples.
  9. Molecular profiling delves deeper into the tumor’s genomic environment by using genetic tests to identify mutations, gene expression, and proteins in a tissue sample that may be driving the growth of cancer.
  10. Tissue samples are obtained during surgery or biopsy. If a tissue sample is not able to be obtained, blood biopsies are an alternative method used increasingly, it can also provide ctDNA information (ct = circulating tumour) this is tumour shedding material in the blood.
  11. Pharmaceutical companies are continuously developing immunotherapies that target the mutations 9mistakes) driving tumor growth, and providing added assistance to the immune system.
  12. Immune support: Our immune system can miss unrepaired mistakes in DNA, allowing cancer to grow. Targeted immunotherapy drugs provide assistance to the immune system in fighting cancer.

How to use this question guide
  1. Ensure that your Doctor knows that you are sending or bringing prepared questions to ask them.
  2. When you meet with your Doctor please ensure that you first listen and take in their information and advice before discussing your questions.
You have several options
  1. Email Template: Copy and Paste the email template (below) and send to your doctor prior to your appointment. This will provide them more time to help you with your questions. Ask for a reply email or a printed-out copy at your scheduled appointment.
  2. Web-Application is an all-screen viewing app
  3. Pdf version; Hand this pdf question sheet to your Doctor, as medical professionals they are trained to expect and answer your questions. Another option is to record the conversation and write down the answers at a later time.

Very Important; ASK this question

  1. Do you have current expertise and experience with my exact cholangiocarcinoma diagnosis?[ ] Yes or [ ] No
  2. If not how will you introduce the expertise and experience required to treat my diagnosis?

Knowing of Cholangiocarcinoma is not the same as having current expertise and experience. Do not be afraid to ask these questions from the beginning. Your doctor is a professional and trained in this.

What is the location of my primary tumour?
[ ] Intrahepatic

[ ] Extrahepatic – Perihilar

[ ] Extrahepatic- Distal

About Metastasis:

Has the cancer spread beyond ‘Stage 1 or 2’ to other locations or organs?

If yes, what stage is the cancer

[ ] Stage 3

[ ] Stage 4

About Surgery

Can the tumour be surgically removed?

[ ] Yes

[ ] What is the name of the surgery option?

[ ] Is it a curative surgery?

[ ] When will it be scheduled?

[ ] What should I know about the side effects

[ ] What should I know about recovery?

[ ] Will I have *adjuvant treatment after surgery

[ ] Potentially Yes, after *neoadjuvant treatment

[ ] No, it is not operable.

[ ] Would you mind if I seek a second opinion on this very important decision?

* Adjuvant: Means Chemo & or Radiation after surgery
* NeoAdjuvant: Means Chemo & or Radiation before surgery

Biopsy (Tissue)

If surgery cannot be performed, can a biopsy procedure be performed?

[ ] Yes

[ ] No

Blood Biopsy

If no tissue sample can you organise for a blood Biopsy to be carried out?

[ ] Yes

[ ] No

Testing IHC Test (Immunohistochemical)

This is a fast and efficient test providing results within 1 – 2 weeks of surgery or a biopsy procedure.

Please ask to highlight the following results:

[ ] PD-L1: (TPS % Score)

[ ] HER2

[ ] MSi Status (Is my tumor MSi-high)

[ ] MMR Status (Is my tumor dMMR)

Genomic (Molecular) Profiling

Genomic (Molecular) Profiling takes between 4 – 6 weeks for results after surgery or a biopsy procedure. Note this is a test that is carried out in a qualified NGS – Next Generation Sequencing laboratory. It is also a separate cost.

Please ensure the report results contain;

[ ] PD-L1: (TPS % Score)

[ ] HER2

[ ] MSi Status (Is my tumor MSi-high)

[ ] MMR Status (Is my tumor dMMR)

[ ] TMB Status (Is my tumor TMB =-high or over 10%)

[ ] All Mutations that are driving the growth of the cancer.

Chemotherapy:
[ ] What is (are) the name of the treatments?

[ ] What are the frequency of treatments?

[ ] How long will I be on this treatment?

[ ] What are the side effects?

[ ] What happens after this treatment, are there other options?

Radiation:

[ ] What is the name of the radiation treatment?

[ ] What is the frequency of treatments?

[ ] How long will I be on Radiation treatment?

[ ] What are the side effects?

[ ] What happens after this treatment, are there other options?

Clinical Trials:

What clinical trials do I or can I qualify for?

[ ] Do I qualify for Gem/Cis/Durvalumab

[ ] Immunotherapy

[ ] Chemotherapy in combination with Immunotherapy

[ ] Other targeted Treatments

Second Opinions

Do you mind if I obtain a second opinion on these questions?

(Medical Professionals understand the importance of this question.)

[ ] Yes

[ ] No

Overview Diagram

Toolkit Resources

Helping to better equip and empower your effort

Email Template
  • Use the template below by copying and pasting it into an email to your doctor.
  • Send the email prior to your appointment so as to give your oncologist enough time to answer before when you next meet.

Subject Line:
“Request for Answers Regarding My Cholangiocarcinoma Diagnosis”

I hope this letter finds you well. I am writing to you today to ask for your help with a few questions that have been on my mind since my Cholangiocarcinoma diagnosis.

As you know, this has been a difficult time for me and my family, and having a clear understanding of my diagnosis and treatment options is extremely important to us. Therefore, I would greatly appreciate it if you could take the time to answer the following questions

I understand that you are very busy, and I appreciate your time and attention to these questions. If it is more convenient for you, you can either email your responses to me or I can collect a printed copy at our next appointment. Thank you for all that you do, and I look forward to speaking with you soon.

Sincerely,[Your name]

Expertise and Experience

Do you have current expertise and experience with my exact cholangiocarcinoma diagnosis?

[  ] Yes[  ] No

If not how will you introduce the expertise and experience required to treat my diagnosis?

Tumour Location
What is the location of my primary tumour?

[  ] Intrahepatic

[  ] Extrahepatic – Perihilar

[  ] Extrahepatic- Distal

Metastasis
Has the cancer spread to other locations or organs?
If yes what stage is the cancer

[  ] Stage 3

[  ] Stage 4

Surgery
Can the tumour be surgically removed?

[  ] Yes

[  ] What is the name of the surgery option?

[  ] Is it a curative surgery?

[  ] When will it be scheduled?

[  ] What should I know about the side effects

[  ] What should I know about recovery?

[  ] Will I have adjuvant treatment after surgery

[  ] Potentially Yes, after neoadjuvant treatment

[  ] No, it is not operable.

[  ] Would you mind if I seek a second opinion on this very important decision?

Biopsy
If surgery cannot be performed, can a biopsy procedure be performed?

[  ] Yes

[  ] No

[  ] Can a “Blood Biopsy” be obtained?

Testing the biopsy

IHC Test (Immunohistochemical)
Can you please highlight the following results in my report;

[  ] PD-L1: (TPS % Score)

[  ] HER2

[  ] MSi Status (Is my tumor MSi-high)

[  ] MMR Status (Is my tumor dMMR)

Genomic (Molecular) Profiling
Can you please ensure the following are highlighted in the report results;

[  ] PD-L1: (TPS % Score)

[  ] HER2

[  ] MSi Status (Is my tumor MSi-high)

[  ] MMR Status (Is my tumor dMMR)

[  ] TMB Status (Is my tumor TMB =-high or over 10%)

[  ] Gene Alterations: Mutation list type(s) driving cancer growth.

Treatments

Chemotherapy:

[  ] What is (are) the name of the treatments?

[  ] What are the frequency of treatments?

[  ] How long will I be on this treatment?

[  ] What are the side effects?

[  ] What happens after this treatment, are there other options?

Radiation:

[  ] What is the name of the radiation treatment?

[  ] What is the frequency of treatments?

[  ] How long will I be on Radiation treatment?

[  ] What are the side effects?

[  ] What happens after this treatment, are there other options?

Clinical Trials:
What clinical trials do I or can I qualify for?

[  ] Do I qualify for Gem/Cis/Durvalumab

[  ] Immunotherapy

[  ] Chemotherapy in combination with Immunotherapy

[  ] Other targeted Treatments

Second Opinions:

Do you mind if I obtain a second opinion on these questions?

Medical Professionals understand the importance of this question, especially with patients diagnosed with cholangiocarcinoma.

[ } Yes

[ } No