Cholangiocarcinoma: Seeing Your Doctor & Who Is Who

This is the second part of our series about the condition based on our patient booklet “Fast Facts for Patient and Supporters: Cholangiocarcinoma”. This article focuses on:

seeing your doctor and
who is who regarding diagnosis and treatment of cholangiocarcinoma.

Seeing Your Doctor

If you see your doctor about your symptoms, you will probably also be asked about your family history, any medical problems affecting you now or in the past, medications you take and whether you smoke or drink alcohol. You will usually have a physical examination, too.

You may be asked for a sample of blood and/or urine. Tests on these samples may include:

a complete blood count (CBC) to look at the number and types of different cells in the blood (white blood cells, red blood cells and platelets)
a comprehensive metabolic panel (CMP), which is a package of tests that measure how well your kidneys and liver are working
tests for proteins (tumor markers) in the blood, as levels can be higher than normal in certain types of cancer.

Your doctor may also recommend imaging. This involves taking pictures (or images) of the site where the cancer started. Other areas may also be checked to see if the cancer has spread.

Questions You May Want to Ask

About the Cancer

How many tumors are there in my liver or bile duct?
How much of my liver or bile duct is involved?
Are there any lymph nodes outside of my liver or bile duct with cancer in them?
Has the cancer spread to any other areas of my body?
If my tumor has been sent for biomarker testing, what are the findings?

About Care

Is my tumor is being discussed at a tumor board?
Who is in my multidisciplinary team?

About Treatment

What is the goal of my treatment?
What is the standard treatment for the type and stage of my cancer?
What are the potential side effects of the treatment being recommended? And how soon might I notice these?

Multidisciplinary Teams and Tumor Boards

Your treatment may be multidisciplinary, involving different types of doctor, as well as other health professionals such as nurses, dieticians and therapists.

Your treatment and care are also likely to be discussed at a tumor board (sometimes this has a different name). This is a meeting of doctors and other professionals involved in cancer tests where the test results of individual patients are discussed and treatment is planned.

Who’s Who?

Medical oncologist: a doctor who specializes in the treatment of cancer, typically with chemotherapy, targeted therapy or immunotherapy. A medical oncologist typically oversees the care of people with cholangiocarcinoma and coordinates between other specialists.
Radiation oncologist: a doctor who treats cancer using radiation therapy.
Gastroenterologist: a doctor who diagnoses and treats disorders of the gastrointestinal tract. An interventional gastroenterologist can place stents in the bile ducts to help the flow of bile.
Interventional radiologist: a doctor who specializes in carrying out procedures using imaging for guidance. An interventional radiologist may put a drain in place.
Surgeon: a doctor who performs surgery to remove a cancerous part of the liver or bile duct. The surgeon can be a surgical oncologist (specializing in cancer surgery), hepatobiliary surgeon (specializing in surgery on the liver and/or pancreas), liver transplant surgeon (specializing in transplanting livers) and/or a general surgeon (who performs different types of surgery).
Nurse: a person trained to assess individuals and provide education on treatment and symptom management. Nurses work closely with doctors to coordinate care.
Nutritionist or dietician: a health professional who is trained and certified to provide guidance on how and what to eat to help improve the diet.
Social worker: a person who may provide emotional or practical support by providing counseling or information on community resources, as well as guidance regarding financial and insurance issues.
Advanced practice clinician: a person trained as either a nurse practitioner or physician assistant. Advanced practice clinicians provide care under the supervision of the doctor, but they can see patients and prescribe medications independently.
Patient navigator: a person, who may also be a nurse, who helps with scheduling, obtaining materials for appointments and coordinating care.
Clinical trial/research coordinator: a person with a background in research or nursing who coordinates a person’s care if they take part in a clinical trial. The coordinator usually works on a specific clinical trial and oversees all logistical aspects of participating in that trial.