Glossary

Fluorouracil, Sold under the brand name Adrucil among others

A medication used to treat cancer. 5FU is the main component of many chemo drugs including FOLFOX (5FU + leucovorin + oxaliplatin), FOLFIRI (5FU + leucovorin + irinotecan), and FOLIRINOX ( FOLIRI + oxaliplatin). The name 5FU (5-fluorouracil) shows that there is a fluorine atom on the 5th carbon of a uracil ring in this drug's molecular structure.

Adverse Events

An undesired effect of a drug or other type of treatment, such as surgery. Adverse events can range from mild to severe and can be life-threatening. Also called adverse effect and adverse reaction.

Alkaline Phosphatase, ALK Phosphatase

An enzyme found throughout the body, but mostly found in the liver, bones, kidneys, and digestive system. ALK Phos is important for breaking down proteins. High levels can indicate liver damage or liver disease, such as a blocked bile duct, or it can indicate certain bone diseases.

Alanine Transaminase, Serum GlutamicPyruvic Transaminase

An enzyme found in the liver that helps convert proteins into energy for the liver cells. It is known as ALT or SGPT. When the liver is damaged, ALT/ SGPT is released into the bloodstream and levels increase.

Aspartate Transaminase, Serum GlutaicOxaloacetic Transaminase

An enzyme that helps metabolize amino acids. AST is normally present in blood at low levels. It is also known as AST or SGOT. An increase in AST/ SGOT levels may indicate liver damage or disease, or muscle damage.

Biliary Tract Cancer/Bile Duct Cancer

Bilirubin

Bilirubin is a substance produced during the normal breakdown of red blood cells. Bilirubin passes through the liver and is excreted in stool. Elevated levels of bilirubin (yellowish colouration of skin and eye which known as jaundice) might indicate liver damage or disease or certain types of anemia.

Carbohydrate Antigen 19-9

A protein in the blood that is a tumor marker, a substance made by cancer cells or by normal cells in response to cancer. Because high levels of CA 19-9 can mean different things, the test is not used by itself to screen for or diagnose cancer. It can help monitor the progress of cancer and the effectiveness of cancer treatment. CA 19-9 is a reliable marker for some patients but not indicative at all for others.

Chest/Abdomen/Pelvis

A term commonly used when ordering imaging (e.g. a CAP CT Scan).

Chimeric Antigen Receptor T-cells

A treatment that modifies blood T cells by treating them to recognize and kill cancer cells.

Computed Tomography Scan

A medical imaging procedure that uses computer-processed combinations of many X-ray measurements taken from different angles to produce cross-sectional (tomographic) images (virtual "slices") of specific areas of a scanned object without cutting. For Cholangio patients, CAT Scan is commonly used to diagnose and monitor metastasis to the lungs, Lymph nodes, or abdominal spread into the peritoneum. Can be done with or without contrast

Cholangiocarcinoma

Cancer of the bile ducts.

Cholangiocarcinoma Foundation

The Cholangiocarcinoma Foundation's (CCF) mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer). Founded in 2006, in Salt Lake City, UT, by a family who lost a loved one to cholangiocarcinoma, CCF has grown to become the leading global resource in research, education, and public awareness.

Cholangiocarcinoma Foundation Annual Conference

CarcinoEmbryonic Antigen

A protein in the body that helps diagnose and monitor various forms of cancer including: Bladder, breast, colon and/or recital, lung, ovarian, pancreatic, stomach, and thyroid.

Chemotherapy

A protein in the body that helps diagnose and monitor various forms of cancer including: Bladder, breast, colon and/or rectal, lung, ovarian, pancreatic, stomach, and thyroid. The chemicals are toxins intended to kill the tumor. Another type of therapy, immunotherapy, activates the immune system to kill the tumor.

Creatinine Blood Test

A creatinine blood test measures the level of creatinine in the blood. Creatinine is a waste product that forms when creatinine, which is found in your muscles, breaks down. Creatinine levels in the blood can provide your doctor with information about how well your kidneys are working.

Disease Control Rate

DCR is defined as the percentage of patients with advanced or metastatic cancer who have achieved complete response

Deep Vein Thrombosis

A blood clot in a deep vein, most commonly in the leg or pelvis.

External Beam Radiation Therapy

A type of radiation therapy that uses a machine to aim high-energy rays at the cancer from outside of the body. Also called external radiation therapy.

Extrahepatic Cholangiocarcinoma

Extrahepatic — Extrahepatic CCA (outside the liver) includes both perihilar and distal tumors.

Endoscopic Retrograde Cholangiopancreatography

A technique that combines the use of endoscopy and fluoroscopy to diagnose and treat certain problems of the biliary or pancreatic ductal systems. ERCP is primarily performed by highly skilled and specialty trained gastroenterologists. The endoscopy goes through the mouth into the stomach and the first part of the intestine (duodenum). Then, the doctor injects a contrast medium into the ducts in the biliary tree and pancreas so they can be seen on radiographs.

Endoscopic Ultrasound / EUS

Endoscopic ultrasound or echo-endoscopy is a medical procedure in which endoscopy is combined with ultrasound to obtain images of the internal organs in the chest, abdomen (esophagus, stomach, pancreas, colon, rectum), and pelvis (urinary bladder and prostate). It can be used to visualize the walls of these organs, or to look at adjacent structures and allows adequate tumor staging and getting tissue biopsy.

Folinic acid, Fluorouracil, and Oxaliplatin

A combination chemotherapy regimen that has historically been used to treat colorectal cancer.

Folinic acid, Fluorouracil and Irinotecan

A combination chemotherapy regimen that has historically been used to treat bowel cancer.

Gamma-glutamyl transferase

An enzyme found in many organs throughout the body, with the highest concentrations found in the liver. GGT is elevated in the blood in most diseases that cause damage to the liver or bile ducts. GGT is usually the first liver enzyme to rise in the blood when any of the bile ducts that carry bile from the liver to the intestines become obstructed. GGT can be used as a follow up to an elevated ALP to help determine if the high ALP result is due to liver or bone disease because both GGT and ALP are increased in liver diseases, but only ALP will be increased with diseases affecting bone tissue.

General Practitioner

A physician who provides both the first contact for a person with an undiagnosed health concern as well as continuing care of varied medical conditions, not limited by cause, organ system, or diagnosis.

Gemcitabine/Cisplatin

A combination chemotherapy regimen used to treat many forms of cancer including biliary tract.

Hepatic arterial infusion pump

A device about the size of a hockey puck that is implanted within the abdomen and connected by a tube through an artery to the liver. It includes a reservoir of strong chemo and a pump to force the chemo into the liver. The reservoir can be refilled every few weeks as needed.

Hand Foot Syndrome, Chemotherapyinduced acral erythema

Reddening, swelling, numbness and sloughing or peeling on the palms of the hands and soles of the feet (and occasionally on the knees, elbows and elsewhere) This may occur as a side effects of some cancer therapies

Hyperthermic Intraperitoneal Chemotherapy

A treatment used during surgery in which a heated solution containing anticancer drugs is infused directly into the abdominal cavity through a thin tube. After removal of as much tumor tissue as possible with surgery, HIPEC is given to kill any remaining tumor cells. It is most often used to treat cancers that have spread to the peritoneum (the lining of the abdominal cavity). Also called CHPP, continuous hyperthermic peritoneal perfusion, and hyperthermic intraperitoneal chemotherapy.

Immune Checkpoint Inhibitors

A type of drug that blocks proteins called checkpoints that are made by some types of immune system cells, such as T cells, and some cancer cells. These checkpoints help keep immune responses from being too strong and sometimes can keep T cells from killing cancer cells. When these checkpoints are blocked, T cells can kill cancer cells better. Examples of checkpoint proteins found on T cells or cancer cells include PD-1/PD-L1 and CTLA-4/B7-1/B7-2. Some immune checkpoint inhibitors are used to treat cancer.

Intrahepatic Cholangiocarcinoma

Intrahepatic—in the small bile duct branches within the liver.

Intensity Modulated Radiation Therapy

A type of 3-dimensional radiation therapy that uses computer-generated images to show the size and shape of the tumor. Thin beams of radiation of different intensities are aimed at the tumor from many angles. This type of radiation therapy reduces the damage to healthy tissue near the tumor. Also called intensitymodulated radiation therapy.

Immune Oncology

Treating tumors by stimulating the body's immune system to identify and attack tumor cells. Common IO drugs include antibodies to sensors like PD-1 and CTLA4 that tend to disable immune cells.

Interventional Radiologist

A medical doctor who performs invasive procedures using radiation or imaging (e.g. liver biopsy, lung biopsy, Y90, ablation).

Internal Radiation Therapy (Brachytherapy)

This type of treatment uses small pellets of radioactive material that are put next to or right into the tumor. The radiation travels a very short distance, so it affects the cancer without causing much harm to nearby healthy body tissues.

Magnetic Resonance Imaging

A medical imaging technique that uses strong magnetic fields, magnetic field gradients, and radio waves to generate images of the organs in the body. MRI does not involve X-rays or use of ionizing radiation, which distinguishes it from CT and PET scans. MRI is often the preferred imaging technique for the liver because it shows greater detail than CT or ultrasound.

MRNA

A type of RNA found in cells. mRNA molecules carry the genetic information needed to make proteins. They carry the information from the DNA in the nucleus of the cell to the cytoplasm where the proteins are made. Also called messenger RNA.

Microsatellite Instability - High

MSI-H cancer cells may have a defect in the ability to correct mistakes that occur when DNA is copied in the cell. Microsatellite instability is found most often in colorectal cancer, gastric cancer, and endometrial cancer, but it may also be found in many other types of cancer. Knowing whether cancer is microsatellite instabilityhigh may help plan the best treatment. Also called microsatellite instability-high cancer.

Metastasis

Cancer that has spread to other areas of the body or to other places in the liver.

nonalcoholic steatohepatitis

Accumulation of fat into the liver in people who drink little or no alcohol.

No Evidence of Disease.

Imaging or testing shows no cancer at the time of that testing.

Objective Response Rate

The percentage of people in a study or treatment group who have a partial response or complete response to the treatment within a certain period of time. A partial response is a decrease in the size of a tumor or in the amount of cancer in the body, and a complete response is the disappearance of all signs of cancer in the body. In a clinical trial, measuring the ORR is one way to see how well a new treatment works. Also called objective response rate.

Overall Survival

The length of time from either the date of diagnosis or the start of treatment for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the overall survival is one way to see how well a new treatment works. Also called OS.

Overall Survival Rate

The percentage of people in a study or treatment group who are still alive for a certain period of time after they were diagnosed with or started treatment for a disease, such as cancer. The overall survival rate is often stated as a five-year survival rate, which is the percentage of people in a study or treatment group who are alive five years after their diagnosis or the start of treatment. Also called survival rate.

Oncologist, Medical Oncologist

A medical doctor who practices oncology, which is a branch of medicine that deals with the prevention, diagnosis, and treatment of cancer. Typically the term Oncologist (Onc) is used when referring to a Medical Oncologist, who specializes in treating cancer using chemotherapy, targeted therapy, or immunotherapy.

Primary Biliary Cirrhosis or Primary Biliary Cholangitis

Autoimmune destruction in the bile ducts leads to accumulation of bile into the liver and subsequent permanent liver scarring

Primary Care Physician

The doctor you go to for routine medical care.

Photodynamic Therapy

Treatment with drugs that become active when exposed to light. These activated drugs may kill cancer cells.

Positron Emission Tomography

A procedure in which a small amount of radioactive glucose (sugar) is injected into a vein, and a scanner is used to make detailed, computerized pictures of areas inside the body where the glucose is taken up. Because cancer cells often take up more glucose than normal cells, the pictures can be used to find cancer cells in the body. Also called positron emission tomography scan.

Progression Free Survival

The length of time during and after the treatment of a disease, such as cancer, that a patient lives with the disease but it does not get worse. In a clinical trial, measuring the PFS is one way to see how well a new treatment works. Also called progression-free survival.

Pressurized intraperitoneal aerosol chemotherapy

Chemotherapy (anti-cancer medications) are infused and circulated in the abdomenal cavity under pressure.

Platelets

Platelets are small cells that circulate in the blood and form blood clots that allow wounds to heal and prevent excessive bleeding. Platelets, also called thrombocytes, are small cells without a nucleus whose function (along with the coagulation factors) is to react to bleeding from blood vessel injury by clumping, thereby initiating a blood clot

Partial Response

A decrease in the size of a tumor, or in the extent of cancer in the body, in response to treatment. Also called partial remission.

Primary Sclerosing Cholangitis

An auto-immune disease of the bile ducts which causes scarring, leading to liver failure eventually, for most patients.

Percutaneous transhepatic cholangiogram

The drainage tube is placed through the skin into one of the bile ducts in the liver to allow bile out

Portal Vein Embolization

A preoperative procedure performed to initiate hypertrophy (an increase in the weight) of the anticipated future liver remnant a couple weeks prior to a major liver resection. The procedure involves injecting the right or left portal vein with embolic (blocking) material to occlude portal blood flow. By occluding the blood flow to areas of the liver that will be resected away, the blood is diverted to healthy parts of the liver and induces hyperplasia (increase in organic tissue caused by cell proliferation) and may allow for a more extensive resection or stage bilateral resections.

Quality of Life

The overall enjoyment of life. Many clinical trials assess the effects of cancer and its treatment on the quality of life. These studies measure aspects of an individual's sense of well-being and ability to carry out activities of daily living.

Red Blood Cell

A red blood cell count is a blood test used to find out how many red blood cells (RBCs) you have. It's also known as an erythrocyte count. The test is important because RBCs contain hemoglobin, which carries oxygen to your body's tissues. The number of RBCs you have can affect how much oxygen your tissues receive. Your tissues need oxygen to function.

Radiation Oncologist

A medical doctor who performs non-invasive treatments using radiation (e.g. SBRT).

Stereotactic Body Radiation Therapy

A form of radiation treatment that delivers to cancer cells extremely precise doses of radiation from different angles simultaneously. The radiation is most intense at the point where the beams intersect. This minimizes damage to the healthy tissue that each beam passes through. CyberKnife is the brand name for one of the types of devices used to do SBRT.

Transarterial chemoembolization

A procedure whereby chemo is injected directly into a tumor in the liver through an catheter in an artery. The artery is then plugged to keep the chemo at the tumor site. This can be done with much stronger chemo than can be used in regular systemic therapy.

Transarterial radioembolization

A procedure whereby radioactive material, typically Y90 in small glass beads, is injected directly into a tumor in the liver through an catheter in an artery. The radiation kills the nearby tumor.

Tumor Mutational Burden

A measure of the number of mutations that have occurred in the tumor cells, and so an indication of how likely the tumor is to respond to immunotherapy or other treatments that target DNA damage repair mechanisms. Tumors with high TMB also usually have high MSI, so MSI is what is often measured to show a high TMB.

Tumor microenvironment

The general space surrounding the cells in a tumor. The microenvironment can promote an immune response to cancer, in which case the tumor is called "hot", or it can include cells that fight the immune system and promote tumors, in which case it is called "cold". Because many solid tumors are cold, there is active research finding ways to make them hot so they can respond to immune therapy.

Total Parenteral Nutrition

A method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. TPN is used when a person cannot or should not receive feedings or fluids by mouth.

Transplant

Video-Assisted Thoracoscopic Surgery

A minimally invasive surgical technique used to diagnose and treat problems in your chest. During a VATS procedure, a tiny camera (thoracoscope) and surgical instruments are inserted into the chest through one or more small incisions in the chest wall. The thoracoscope transmits images of the inside of the chest onto a video monitor, guiding the surgeon in performing the procedure.

White Blood Cell

WBCs, also called leukocytes, are an important part of the immune system. These cells help fight infections by attacking bacteria, viruses, and germs that invade the body. White blood cells originate in the bone marrow but circulate throughout the bloodstream.

Pancreaticoduodenectomy

A complex operation to remove the head of the pancreas, the first part of the small intestine (duodenum), the gallbladder and the bile duct. The Whipple procedure is used to treat (remove) tumors and treat other disorders of the pancreas, intestine and bile duct. After performing the Whipple procedure, your surgeon reconnects the remaining organs to allow you to digest food normally after surgery. Patients may need to take supplemental enzymes to aid digestion.

Yttrium-90/Radioembolization or TheraSphere

A radioactive material, Yttrium-90, that can be implanted within a tumor in the liver through a catheter inserted through an artery (TARE). The radiation kills nearby cancerous material.

Distal Cholangiocarcinoma

(Distal)—further down in the bile duct, outside the liver, closer to the duodenum.

Perihilar Cholangiocarcinoma

Perihilar or Hilar (Klatskin tumors) – at the hilum, the point where the hepatic ducts join together to exit the liver.