Cholangiocarcinoma Diagnosis Questions for Your First Appointment

How to Use These Cholangiocarcinoma Diagnosis Questions

Send these questions to your doctor before your appointment where possible. This gives them time to prepare clear answers.

In the appointment, listen first. Then use these questions to fill the gaps. Write the answers down, ask for copies of your reports, and keep everything together with your Patient Navigator Journal.

• Start with the first questions if time is short.
• Work through the sections that apply to your situation.
• You do not need to ask every question in one appointment.
• Bring a support person if possible.
• Ask if you can record the appointment so you can listen again later.

The First Cholangiocarcinoma Diagnosis Questions to Ask

1. Do you have current high-flow expertise and experience with my exact cholangiocarcinoma diagnosis?
2. What exact type of biliary tract cancer do I have?
3. Is it intrahepatic, perihilar, distal extrahepatic, gallbladder, ampullary, pancreatic, or another biliary tract cancer?
4. Where is my primary tumour located?
5. Has the cancer spread beyond the primary tumour?
6. If it has spread, can you mark the locations on my Patient Navigator Journal or show me on the scan?
7. What stage is the cancer?
8. Can the tumour be surgically removed?
9. If surgery is not possible now, could treatment make surgery possible later?
10. If surgery has not been done, can a biopsy, brushing, or blood biopsy be organised?
11. Has IHC testing been done, including MSI, MMR, HER2 and PD-L1 where relevant?
12. Can comprehensive genomic profiling be requested as soon as possible?
13. What first-line treatment options will be actioned?
14. Am I being considered for gemcitabine, cisplatin and durvalumab, or is another first-line plan more appropriate?
15. What clinical trials should be considered before my options narrow?
16. Would you support me seeking a second opinion before a major treatment decision is made?

1. Cholangiocarcinoma Diagnosis Questions About Expertise and Experience

Cholangiocarcinoma is rare and complex. Knowing of cholangiocarcinoma is not the same as having current expertise and experience with it.

• Do you have current expertise and experience with my exact cholangiocarcinoma diagnosis?
• If not, how will you introduce the expertise and experience required to treat my diagnosis?
• Has my case been reviewed by a specialist cholangiocarcinoma, hepatobiliary, or multidisciplinary team?
• Who else should review my case before major treatment decisions are made?
• How often do you treat patients with cholangiocarcinoma or biliary tract cancer?
• Are you connected with a high-volume hepatobiliary surgeon, medical oncologist, radiation oncologist, interventional radiologist, molecular tumour board, or clinical trial team?

2. Cholangiocarcinoma Diagnosis Questions About Tumour Location

Tumour location matters because it affects surgery, drainage, biopsy, treatment planning, and second opinion decisions.

• What is the location of my primary tumour?
• Is it intrahepatic cholangiocarcinoma?
• Is it perihilar cholangiocarcinoma?
• Is it distal extrahepatic cholangiocarcinoma?
• Could this be gallbladder cancer, ampullary cancer, pancreatic cancer, or another biliary tract cancer?
• Is bile flow blocked or restricted?
• Is there a stricture, mass, or obstruction?
• Does the tumour involve blood vessels, lymph nodes, the liver, pancreas, bile ducts, gallbladder, duodenum, or other organs?
• Can you show me the tumour location on my scan?

3. Cholangiocarcinoma Diagnosis Questions About Stage and Spread

Staging helps show whether the cancer is local, locally advanced, metastatic, resectable, borderline resectable, or unresectable.

• Has the cancer spread beyond the primary tumour?
• If yes, where has it spread?
• Are lymph nodes involved?
• Is the liver involved?
• Are the lungs involved?
• Is the peritoneum involved?
• Is bone involved?
• Are any other areas involved?
• What stage is the cancer?
• Is the cancer local, locally advanced, metastatic, resectable, borderline resectable, or unresectable?
• What does this stage mean in plain language?
• What decision does this stage change?

4. Surgery Questions

Surgery can be one of the most important decisions in cholangiocarcinoma. A second surgical opinion is often worth seeking before accepting that surgery is or is not possible.

• Can the tumour be surgically removed?
• If surgery is possible, what is the name of the surgery?
• Is the surgery intended to be curative?
• When would surgery be scheduled?
• What should I know about the side effects?
• What should I know about recovery?
• Will I need treatment after surgery?
• Could I need treatment before surgery?
• If surgery is not possible now, could treatment make surgery possible later?
• What would need to change for surgery to become possible?
• Should I seek a second surgical opinion from a high-volume hepatobiliary surgeon?
• Can my imaging and reports be sent quickly for surgical review?

Words You May Hear

• Adjuvant treatment: treatment after surgery, often chemotherapy or radiation.
• Neoadjuvant treatment: treatment before surgery, sometimes used to shrink or control the tumour.
• Resectable: able to be surgically removed.
• Unresectable: not able to be surgically removed at this time.
• Borderline resectable: surgery may be possible, but expert review is needed.

5. Biopsy and Tissue Questions

Tissue is not just for diagnosis. Tissue can also help guide IHC testing, genomic profiling, targeted therapy, immunotherapy, and clinical trial decisions.

• Has a biopsy, brushing, or tissue sample been taken?
• If surgery cannot be performed, can a biopsy procedure be performed?
• Is there enough tumour tissue for IHC testing and genomic profiling?
• Where is my tumour tissue stored?
• Can I have a copy of my biopsy, brushing, pathology, and surgical reports?
• If no tissue sample is available, can a blood biopsy or liquid biopsy be organised?
• Who will decide whether my sample is suitable for comprehensive genomic profiling?
• Can the tissue be preserved for future testing if needed?

6. IHC Testing

IHC stands for immunohistochemistry. It is a laboratory test that looks for certain proteins in tumour cells. These results can help confirm the cancer type and may point toward treatment options.

• Has IHC testing been done on my tumour?
• Can you please highlight the PD-L1 score?
• Can you please highlight HER2?
• Can you please highlight MSI status?
• Can you please highlight MMR status?
• Were MLH1, PMS2, MSH2 and MSH6 checked?
• Do any of these results affect immunotherapy or targeted therapy options?
• Do the IHC results support cholangiocarcinoma or suggest another primary cancer type?
• Can I have a copy of the full IHC report?

7. Genomic Profiling

Comprehensive genomic profiling looks deeper into the tumour. It searches for gene alterations that may help explain what is driving the cancer and whether targeted treatments, immunotherapy, or clinical trials may be relevant.

• Has comprehensive genomic profiling been requested?
• If not, why not?
• What genomic test is being used?
• Is the test tissue-based, blood-based, or both?
• When will the results be available?
• Who will explain the results to me?
• Can I have a copy of the full genomic report?
• Will the report include MSI, MMR, TMB, PD-L1, HER2, FGFR2, IDH1, BRAF, KRAS, NTRK, RET, BRCA, MTAP and other relevant alterations?
• Will the results be reviewed for targeted therapy, immunotherapy, and clinical trial options?
• Will my results be reviewed by a molecular tumour board?
• If no targetable alteration is found, what does that mean for treatment and trials?

8. Treatment Questions

Treatment questions should clarify the treatment name, goal, timing, side effects, how response will be measured, and what happens if the treatment does not work.

• What treatment is being recommended?
• What are the names of the drugs or treatments?
• Am I being considered for standard first-line treatment such as gemcitabine, cisplatin and durvalumab?
• If not, why is another treatment plan more appropriate for my situation?
• What is the goal of treatment?
• Is the goal cure, disease control, symptom control, tumour shrinkage before surgery, or bridge to another option?
• How often will I have treatment?
• How long will I be on this treatment?
• What are the common side effects?
• What side effects should I report urgently?
• How will we know if treatment is working?
• When will my next scan be done?
• What happens if this treatment does not work?
• What treatment options may be available after this treatment?

9. Chemotherapy Questions

• What is the name of the chemotherapy treatment?
• Is chemotherapy being used alone or with immunotherapy?
• What are the names of each drug?
• What is the treatment schedule?
• How often will I have treatment?
• How long will I be on this treatment?
• What side effects should I expect?
• What side effects should I report urgently?
• How will chemotherapy affect my blood counts, liver function, kidneys, appetite, energy, and infection risk?
• What happens after this treatment?
• Are there other options if this treatment stops working?

10. Immunotherapy Questions

• Is immunotherapy relevant in my case?
• Do my MSI, MMR, TMB, PD-L1, or other results affect immunotherapy options?
• Is immunotherapy being considered with chemotherapy?
• Is immunotherapy being considered because of a specific biomarker?
• What immune-related side effects should I know about?
• What symptoms should I report urgently while on immunotherapy?
• How will we know if immunotherapy is working?
• Could immunotherapy affect future treatment or trial options?

11. Radiation and Local Treatment Questions

Radiation and local treatments may be used to control symptoms, treat a specific site, support surgery, protect bile flow, or manage disease in the liver or bile ducts.

• Is radiation relevant in my case?
• What type of radiation treatment is being considered?
• What is the name of the radiation treatment?
• Is radiation being used to control symptoms, shrink the tumour, treat a specific site, or support another treatment plan?
• How often would I have radiation?
• How long would the radiation treatment course take?
• What side effects should I expect?
• What side effects should I report urgently?
• What happens after radiation?
• Are other local treatments relevant, such as ablation, embolisation, stenting, drainage, or liver-directed therapy?
• Should an interventional radiologist or radiation oncologist review my case?

12. Bile Flow, Stents and Drainage Questions

Bile flow matters. If bile is blocked, infection risk, jaundice, itching, digestion problems, and treatment delays can follow.

• Is my bile flow blocked or restricted?
• What are the characteristics of my bile: Is it stagnant? Too thin? Or thick and abrasive?
• Is it impacting my gallbladder’s normal function with stones or a buildup in sediment?
• Do I need a stent, drain, ERCP, or another procedure?
• Is the current stent or drain working properly?
• What signs could mean the stent or drain is blocked or infected?
• What symptoms should make me seek urgent help?
• Who do I call if I develop fever, chills, worsening jaundice, dark urine, pale stools, pain, or confusion?
• Could bile flow problems delay chemotherapy, immunotherapy, surgery, or trials?

13. Clinical Trial Questions

Clinical trials should be considered early, not only when every standard option has been used. Some trials depend on timing, test results, treatment history, location, and fitness.

• What clinical trials do I qualify for now?
• Could I qualify for clinical trials after genomic profiling results are available?
• Could starting treatment now affect clinical trial eligibility later?
• Who is responsible for searching for clinical trials?
• Can I be referred for clinical trial review before options narrow?
• Are there clinical trials available interstate or overseas that may be relevant?
• Do I qualify for chemotherapy plus immunotherapy?
• Do I qualify for targeted treatment?
• Do I qualify for immunotherapy because of MSI-high, dMMR, TMB-high, PD-L1, or another marker?
• Do I qualify for trials based on FGFR2, IDH1, BRAF, KRAS, HER2, NTRK, RET, BRCA, MTAP, or another alteration?

14. Second Opinion Questions

A second opinion is not a rejection of your treating team. It is a way to protect options in a rare and complex cancer.

• Do you mind if I obtain a second opinion on these questions?
• Would you support a second opinion before a major treatment decision is made?
• Who would you recommend for a cholangiocarcinoma second opinion?
• Should I seek a second opinion from a hepatobiliary surgeon?
• Should I seek a second opinion from a medical oncologist?
• Should I seek a second opinion from a radiation oncologist?
• Should I seek a second opinion from an interventional radiologist?
• Should my case be reviewed by a molecular tumour board or clinical trial team?
• Can my reports and imaging be sent quickly for review?
• Can I have copies of all pathology, imaging, surgical, IHC, genomic profiling, and blood test reports?

15. Reports to Request

Ask for copies. Reports are not just paperwork. They are the map other specialists need to review your case quickly.

• Pathology report
• Biopsy or brushing report
• Surgical report, if surgery has been done
• IHC report
• Comprehensive genomic profiling report
• Blood test results, including liver function tests
• CT, MRI, PET, ultrasound, or other imaging reports
• Scan images on disc or digital transfer link, if needed for second opinion
• Treatment plan
• Medication list
• Discharge summaries

Copy-and-Paste Email Template

Use this if you want to send questions before your appointment.

The purpose of these cholangiocarcinoma diagnosis questions is not to overwhelm you. The purpose is to help you get oriented early, collect the right reports, ask about testing before tissue is lost, and protect treatment and clinical trial options before they narrow.

What To Do Next

Do not try to ask every question at once. Start with the first questions, then work through the sections that match your situation.

Keep your answers with your pathology reports, imaging reports, blood tests, treatment plan, and genomic profiling report if available.

The aim is not to become a doctor. The aim is to become oriented enough to protect your options.