What You

Need To

Know About

Cancerof the

Pancreas

NIH Publication No. 01–1560Revised July 2001

Printed September 2001

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICESPublic Health Service

National Institutes of HealthP034

NATIONAL INSTITUTES OF HEALTHNational Cancer Institute

™

WhatYou

NeedTo

KnowAbout

Index

This booklet is about cancer of thepancreas. The Cancer Information Servicecan help you learn more about this disease.The staff can talk with you in English orSpanish.

The number is 1–800–4–CANCER(1–800–422–6237). The number for deafand hard of hearing callers with TTYequipment is 1–800–332–8615. The call isfree.

Este folleto es acerca del cáncer delpáncreas. Llame al Servicio de Informaciónsobre el Cáncer para saber más sobre estaenfermedad. Este servicio tiene personalque habla español.

El número a llamar es el1–800–4–CANCER (1–800–422–6237).Personas con dificultades de audición y quecuentan con equipo TTY pueden llamar al1–800–332–8615. La llamada es gratis.

WhatYou

NeedTo

KnowAbout

Index

Contents

The Pancreas 2

Understanding Cancer 4

Pancreatic Cancer: Who’s at Risk? 5

Symptoms 7

Diagnosis 7

Staging 11

Treatment 11

Side Effects of Treatment 19

Pain Control 21

Nutrition 22

Followup Care 23

Support for People with Pancreatic Cancer 24

The Promise of Cancer Research 25

Dictionary 26

National Cancer Institute Information Resources 35

National Cancer Institute Booklets 36

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICESPublic Health ServiceNational Institutes of Health

WhatYou

NeedTo

KnowAbout

Index

1

*Words that may be new to readers appear in italics. The“Dictionary” section gives definitions of these terms. Some words inthe “Dictionary” have a “sounds-like” spelling to show how to pronounce them.

What You Need To Know About™Cancer of the Pancreas

his National Cancer Institute (NCI) booklet hasimportant information about cancer* of the

pancreas. In the United States, cancer of the pancreas isdiagnosed in more than 29,000 people every year. It isthe fifth leading cause of cancer death.

This booklet discusses possible causes of cancer ofthe pancreas. It also describes symptoms, diagnosis,treatment, and followup care. This information can helppatients and their families better understand and copewith this disease.

Scientists are studying cancer of the pancreas tolearn more about this disease. They are finding outmore about its causes. Doctors are exploring new waysto treat it. Research already has led to better quality oflife for people with cancer of the pancreas.

Information specialists at the NCI’s CancerInformation Service at 1–800–4–CANCER can helppeople with questions about cancer and can send NCIpublications. Also, many NCI publications are on theInternet at http://cancer.gov/publications. People inthe United States and its territories may use this Website to order publications. This Web site also explainshow people outside the United States can mail or faxtheir requests for NCI publications.

T

WhatYou

NeedTo

KnowAbout

Index

The Pancreas

he pancreas is a gland located deep in theabdomen between the stomach and the spine

(backbone). The liver, intestine, and other organssurround the pancreas.

The pancreas is about 6 inches long and is shapedlike a flat pear. The widest part of the pancreas is thehead, the middle section is the body, and the thinnestpart is the tail.

2

T

This picture shows the pancreas and nearby organs.

WhatYou

NeedTo

KnowAbout

Index

3

The pancreas makes insulin and other hormones.These hormones enter the bloodstream and travelthroughout the body. They help the body use or storethe energy that comes from food. For example, insulinhelps control the amount of sugar in the blood.

The pancreas also makes pancreatic juices. Thesejuices contain enzymes that help digest food. Thepancreas releases the juices into a system of ductsleading to the common bile duct. The common bile ductempties into the duodenum, the first section of thesmall intestine.

This picture shows the pancreas, common bile duct, andsmall intestine.

WhatYou

NeedTo

KnowAbout

Index

4

Understanding Cancer

ancer is a group of many related diseases. Allcancers begin in cells, the body’s basic unit of

life. Cells make up tissues, and tissues make up theorgans of the body.

Normally, cells grow and divide to form new cells asthe body needs them. When cells grow old and die,new cells take their place.

Sometimes this orderly process breaks down. Newcells form when the body does not need them, or oldcells do not die when they should. These extra cells canform a mass of tissue called a growth or tumor.

Tumors can be benign or malignant:

• Benign tumors are not cancer. Usually, doctors canremove them. In most cases, benign tumors do notcome back after they are removed. Cells from benigntumors do not spread to tissues around them or toother parts of the body. Most important, benigntumors are rarely a threat to life.

• Malignant tumors are cancer. They are generallymore serious and may be life threatening. Cancercells can invade and damage nearby tissues andorgans. Also, cancer cells can break away from amalignant tumor and enter the bloodstream orlymphatic system. That is how cancer cells spreadfrom the original cancer (primary tumor) to formnew tumors in other organs. The spread of cancer iscalled metastasis.

Most pancreatic cancers begin in the ducts that carrypancreatic juices. Cancer of the pancreas may be calledpancreatic cancer or carcinoma of the pancreas.

C

WhatYou

NeedTo

KnowAbout

Index

5

A rare type of pancreatic cancer begins in the cellsthat make insulin and other hormones. Cancer thatbegins in these cells is called islet cell cancer. Thisbooklet does not deal with this rare disease. The CancerInformation Service (1–800–4–CANCER) can provideinformation about islet cell cancer.

When cancer of the pancreas spreads (metastasizes)outside the pancreas, cancer cells are often found innearby lymph nodes. If the cancer has reached thesenodes, it means that cancer cells may have spread toother lymph nodes or other tissues, such as the liver orlungs. Sometimes cancer of the pancreas spreads to theperitoneum, the tissue that lines the abdomen.

When cancer spreads from its original place toanother part of the body, the new tumor has the samekind of abnormal cells and the same name as theprimary tumor. For example, if cancer of the pancreasspreads to the liver, the cancer cells in the liver arepancreatic cancer cells. The disease is metastaticpancreatic cancer, not liver cancer. It is treated aspancreatic cancer, not liver cancer.

Pancreatic Cancer: Who’s at Risk?

o one knows the exact causes of pancreaticcancer. Doctors can seldom explain why one

person gets pancreatic cancer and another does not.However, it is clear that this disease is not contagious.No one can “catch” cancer from another person.

Research has shown that people with certain riskfactors are more likely than others to developpancreatic cancer. A risk factor is anything thatincreases a person’s chance of developing a disease.

N

WhatYou

NeedTo

KnowAbout

Index

Studies have found the following risk factors:

• Age—The likelihood of developing pancreaticcancer increases with age. Most pancreatic cancersoccur in people over the age of 60.

• Smoking—Cigarette smokers are two or three timesmore likely than nonsmokers to develop pancreaticcancer.

• Diabetes—Pancreatic cancer occurs more often inpeople who have diabetes than in people who donot.

• Being male—More men than women are diagnosedwith pancreatic cancer.

• Being African American—African Americans aremore likely than Asians, Hispanics, or whites to getpancreatic cancer.

• Family history—The risk for developing pancreaticcancer triples if a person’s mother, father, sister, orbrother had the disease. Also, a family history ofcolon or ovarian cancer increases the risk ofpancreatic cancer.

• Chronic pancreatitis— Chronic pancreatitis is apainful condition of the pancreas. Some evidencesuggests that chronic pancreatitis may increase therisk of pancreatic cancer.

Other studies suggest that exposure to certainchemicals in the workplace or a diet high in fat mayincrease the chance of getting pancreatic cancer.

Most people with known risk factors do not getpancreatic cancer. On the other hand, many who do getthe disease have none of these factors. People whothink they may be at risk for pancreatic cancer shoulddiscuss this concern with their doctor. The doctor maysuggest ways to reduce the risk and can plan anappropriate schedule for checkups.

6

WhatYou

NeedTo

KnowAbout

Index

7

Symptoms

ancreatic cancer is sometimes called a “silentdisease” because early pancreatic cancer often

does not cause symptoms. But, as the cancer grows,symptoms may include:

• Pain in the upper abdomen or upper back

• Yellow skin and eyes, and dark urine from jaundice

• Weakness

• Loss of appetite

• Nausea and vomiting

• Weight loss

These symptoms are not sure signs of pancreaticcancer. An infection or other problem could also causethese symptoms. Only a doctor can diagnose the causeof a person’s symptoms. Anyone with these symptomsshould see a doctor so that the doctor can treat anyproblem as early as possible.

Diagnosis

f a patient has symptoms that suggest pancreaticcancer, the doctor asks about the patient’s medical

history. The doctor may perform a number ofprocedures, including one or more of the following:

• Physical exam—The doctor examines the skin andeyes for signs of jaundice. The doctor then feels theabdomen to check for changes in the area near thepancreas, liver, and gallbladder. The doctor alsochecks for ascites, an abnormal buildup of fluid inthe abdomen.

P

I

WhatYou

NeedTo

KnowAbout

Index

8

• Lab tests—The doctor may take blood, urine, andstool samples to check for bilirubin and othersubstances. Bilirubin is a substance that passes fromthe liver to the gallbladder to the intestine. If thecommon bile duct is blocked by a tumor, thebilirubin cannot pass through normally. Blockagemay cause the level of bilirubin in the blood, stool,or urine to become very high. High bilirubin levelscan result from cancer or from noncancerousconditions.

• CT scan (Computed tomography)—An x-raymachine linked to a computer takes a series ofdetailed pictures. The x-ray machine is shaped like adonut with a large hole. The patient lies on a bed that

WhatYou

NeedTo

KnowAbout

Index

9

passes through the hole. As the bed moves slowlythrough the hole, the machine takes many x-rays.The computer puts the x-rays together to createpictures of the pancreas and other organs and bloodvessels in the abdomen.

• Ultrasonography—The ultrasound device usessound waves that cannot be heard by humans. Thesound waves produce a pattern of echoes as theybounce off internal organs. The echoes create apicture of the pancreas and other organs inside theabdomen. The echoes from tumors are differentfrom echoes made by healthy tissues.

The ultrasound procedure may use an external orinternal device, or both types:

• Transabdominal ultrasound: To make images of the pancreas, the doctor places the ultrasound device on the abdomen and slowly moves it around.

• EUS (endoscopic ultrasound): The doctor passes a thin, lighted tube (endoscope) through the patient’s mouth and stomach, down into the first part of the small intestine. At the tip of the endoscope is an ultrasound device. The doctor slowly withdraws the endoscope from the intestine toward the stomach to make images of the pancreas and surrounding organs and tissues.

• ERCP (endoscopic retrogradecholangiopancreatography)—The doctor passes anendoscope through the patient’s mouth and stomach,down into the first part of the small intestine. Thedoctor slips a smaller tube (catheter) through theendoscope into the bile ducts and pancreatic ducts.After injecting dye through the catheter into theducts, the doctor takes x-ray pictures. The x-rays canshow whether the ducts are narrowed or blocked bya tumor or other condition.

WhatYou

NeedTo

KnowAbout

Index

10

• PTC (percutaneous transhepaticcholangiography)—A dye is injected through a thinneedle inserted through the skin into the liver.Unless there is a blockage, the dye should movefreely through the bile ducts. The dye makes the bileducts show up on x-ray pictures. From the pictures,the doctor can tell whether there is a blockage froma tumor or other condition.

• Biopsy—In some cases, the doctor may removetissue. A pathologist then uses a microscope to lookfor cancer cells in the tissue. The doctor may obtaintissue in several ways. One way is by inserting aneedle into the pancreas to remove cells. This iscalled fine-needle aspiration. The doctor uses x-rayor ultrasound to guide the needle. Sometimes thedoctor obtains a sample of tissue during EUS orERCP. Another way is to open the abdomen duringan operation.

A person who needs a biopsy may want to ask thedoctor the following questions:

• What kind of biopsy will I have?

• How long will it take? Will I be awake? Will it hurt?

• Are there any risks?

• How soon will I know the results?

• If I do have cancer, who will talk to me abouttreatment? When?

WhatYou

NeedTo

KnowAbout

Index

11

Staging

hen pancreatic cancer is diagnosed, the doctorneeds to know the stage, or extent, of the disease

to plan the best treatment. Staging is a careful attemptto find out the size of the tumor in the pancreas,whether the cancer has spread, and, if so, to what partsof the body.

The doctor may determine the stage of pancreaticcancer at the time of diagnosis, or the patient may needto have more tests. Such tests may include blood tests,a CT scan, ultrasonography, laparoscopy, orangiography. The test results will help the doctordecide which treatment is appropriate.

Treatment

any people with pancreatic cancer want to take anactive part in making decisions about their

medical care. They want to learn all they can abouttheir disease and their treatment choices. However, theshock and stress that people may feel after a diagnosisof cancer can make it hard for them to think ofeverything they want to ask the doctor. Often it helps tomake a list of questions before an appointment. To helpremember what the doctor says, patients may take notesor ask whether they may use a tape recorder. Somepatients also want to have a family member or friendwith them when they talk to the doctor—to take part inthe discussion, to take notes, or just to listen.

Cancer of the pancreas is very hard to control withcurrent treatments. For that reason, many doctorsencourage patients with this disease to consider takingpart in a clinical trial. Clinical trials are an importantoption for people with all stages of pancreatic cancer.

W

M

WhatYou

NeedTo

KnowAbout

Index

12

The section on “The Promise of Cancer Research” hasmore information about clinical trials.

At this time, pancreatic cancer can be cured onlywhen it is found at an early stage, before it has spread.However, other treatments may be able to control thedisease and help patients live longer and feel better.When a cure or control of the disease is not possible,some patients and their doctors choose palliativetherapy. Palliative therapy aims to improve quality oflife by controlling pain and other problems caused bythis disease.

The doctor may refer patients to an oncologist, adoctor who specializes in treating cancer, or patientsmay ask for a referral. Specialists who treat pancreaticcancer include surgeons, medical oncologists, and

WhatYou

NeedTo

KnowAbout

Index

13

radiation oncologists. Treatment generally beginswithin a few weeks after the diagnosis. There will betime for patients to talk with the doctor about treatmentchoices, get a second opinion, and learn more about thedisease.

Getting a Second OpinionBefore starting treatment, a patient may want a

second opinion about the diagnosis and the treatmentplan. Some insurance companies require a secondopinion; others may cover a second opinion if thepatient requests it. Gathering medical records andarranging to see another doctor may take a little time.In most cases, a brief delay to get another opinion willnot make therapy less helpful.

There are a number of ways to find a doctor for asecond opinion:

• The doctor may refer patients to one or morespecialists. At cancer centers, several specialistsoften work together as a team.

• The Cancer Information Service(1–800–4–CANCER) can tell callers abouttreatment facilities, including cancer centers andother programs supported by the National CancerInstitute, and can send printed information aboutfinding a doctor.

• A local medical society, a nearby hospital, or amedical school can usually provide the name ofspecialists.

• The Official ABMS Directory of Board CertifiedMedical Specialists lists doctors’ names along withtheir specialty and their educational background.This resource is available in most public libraries.The American Board of Medical Specialties(ABMS) also offers information by telephone and onthe Internet. The public may use these services to

WhatYou

NeedTo

KnowAbout

Index

check whether a doctor is board certified. Thetelephone number is 1–866–ASK–ABMS(1–866–275–2267). The Internet address ishttp://www.abms.org/newsearch.asp.

Preparing for TreatmentThe doctor can describe treatment choices and

discuss the results expected with each treatment option.The doctor and patient can work together to develop atreatment plan that fits the patient’s needs.

14

These are some questions a person may want toask the doctor before treatment begins:

• What is the diagnosis?

• Where in the pancreas did the cancer start?

• Is there any evidence the cancer has spread? What is the stage of the disease?

• Do I need any more tests to check whether the disease has spread?

• What are my treatment choices? Which do yourecommend for me? Why?

• What are the expected benefits of each kind oftreatment?

• What are the risks and possible side effects of each treatment?

• What is the treatment likely to cost? Is this treatment covered by my insurance plan?

• How will treatment affect my normal activities?

• Would a clinical trial (research study) beappropriate for me?

WhatYou

NeedTo

KnowAbout

Index

15

Treatment depends on where in the pancreas thetumor started and whether the disease has spread.When planning treatment, the doctor also considersother factors, including the patient’s age and generalhealth.

People do not need to ask all of their questions orunderstand all of the answers at one time. They willhave other chances to ask the doctor to explain thingsthat are not clear and to ask for more information.

Methods of TreatmentPeople with pancreatic cancer may have several

treatment options. Depending on the type and stage,pancreatic cancer may be treated with surgery,radiation therapy, or chemotherapy. Some patientshave a combination of therapies.

Surgery may be used alone or in combination withradiation therapy and chemotherapy.

The surgeon may remove all or part of the pancreas.The extent of surgery depends on the location and sizeof the tumor, the stage of the disease, and the patient’sgeneral health.

• Whipple procedure: If the tumor is in the head (thewidest part) of the pancreas, the surgeon removesthe head of the pancreas and part of the smallintestine, bile duct, and stomach. The surgeon mayalso remove other nearby tissues.

• Distal pancreatectomy: The surgeon removes thebody and tail of the pancreas if the tumor is in eitherof these parts. The surgeon also removes the spleen.

• Total pancreatectomy: The surgeon removes theentire pancreas, part of the small intestine, a portionof the stomach, the common bile duct, thegallbladder, the spleen, and nearby lymph nodes.

WhatYou

NeedTo

KnowAbout

Index

16

Sometimes the cancer cannot be completelyremoved. But if the tumor is blocking the common bileduct or duodenum, the surgeon can create a bypass. Abypass allows fluids to flow through the digestive tract.It can help relieve jaundice and pain resulting from ablockage.

The doctor sometimes can relieve blockage withoutdoing bypass surgery. The doctor uses an endoscope toplace a stent in the blocked area. A stent is a tiny plasticor metal mesh tube that helps keep the duct orduodenum open.

After surgery, some patients are fed liquidsintravenously (by IV) and through feeding tubes placedinto the abdomen. Patients slowly return to eating solidfoods by mouth. A few weeks after surgery, the feedingtubes are removed.

These are some questions a person may want toask the doctor before having surgery:

• What kind of operation will I have?

• How will I feel after the operation?

• How will you treat my pain?

• What other treatment will I need?

• How long will I be in the hospital?

• Will I need a feeding tube after surgery? Will Ineed a special diet?

• What are the long-term effects?

• When can I get back to my normal activities?

• How often will I need checkups?

WhatYou

NeedTo

KnowAbout

Index

17

Radiation therapy (also called radiotherapy) useshigh-energy rays to kill cancer cells. A large machinedirects radiation at the abdomen. Radiation therapy maybe given alone, or with surgery, chemotherapy, or both.

Radiation therapy is local therapy. It affects cancercells only in the treated area. For radiation therapy,patients go to the hospital or clinic, often 5 days a weekfor several weeks.

Doctors may use radiation to destroy cancer cellsthat remain in the area after surgery. They also useradiation to relieve pain and other problems caused bythe cancer.

These are some questions a person may want toask the doctor before having radiation therapy:

• Why do I need this treatment?

• When will the treatments begin? When willthey end?

• How will I feel during therapy? Are there sideeffects?

• What can I do to take care of myself duringtherapy? Are there certain foods that I shouldeat or avoid?

• How will we know if the radiation is working?

• Will I be able to continue my normal activities during treatment?

WhatYou

NeedTo

KnowAbout

Index

Chemotherapy is the use of drugs to kill cancercells. Doctors also give chemotherapy to help reducepain and other problems caused by pancreatic cancer. Itmay be given alone, with radiation, or with surgery andradiation.

Chemotherapy is systemic therapy. The doctorusually gives the drugs by injection. Once in thebloodstream, the drugs travel throughout the body.

Usually chemotherapy is an outpatient treatmentgiven at the hospital, clinic, doctor’s office, or home.However, depending on which drugs are given and thepatient’s general health, the patient may need to stay inthe hospital.

18

Patients may want to ask these questions aboutchemotherapy:

• Why do I need this treatment?

• What will it do?

• What drugs will I be taking? How will they begiven? Will I need to stay in the hospital?

• Will the treatment cause side effects? What canI do about them?

• How long will I be on this treatment?

WhatYou

NeedTo

KnowAbout

Index

19

Side Effects of Treatment

ecause cancer treatment may damage healthy cellsand tissues, unwanted side effects are common.

These side effects depend on many factors, includingthe type and extent of the treatment. Side effects maynot be the same for each person, and they may evenchange from one treatment session to the next. Thehealth care team will explain possible side effects andhow they will help the patient manage them.

The NCI provides helpful booklets about cancertreatments and coping with side effects, such asRadiation Therapy and You, Chemotherapy and You,and Eating Hints for Cancer Patients. See the sectionscalled “National Cancer Institute InformationResources” and “National Cancer Institute Booklets”for other sources of information about side effects.

SurgerySurgery for pancreatic cancer is a major operation.

Patients need to stay in the hospital for several daysafterward. Patients may feel weak or tired. Most needto rest at home for about a month. The length of time ittakes to regain strength varies.

The side effects of surgery depend on the extent ofthe operation, the person’s general health, and otherfactors. Most patients have pain for the first few daysafter surgery. Pain can be controlled with medicine,and patients should discuss pain relief with the doctoror nurse. The section on “Pain Control” has moreinformation.

Removal of part or all of the pancreas may make ithard for a patient to digest foods. The health care teamcan suggest a diet plan and medicines to help relievediarrhea, pain, cramping, or feelings of fullness.

B

WhatYou

NeedTo

KnowAbout

Index

During the recovery from surgery, the doctor willcarefully monitor the patient’s diet and weight. At first,a patient may have only liquids and may receive extranourishment intravenously or by feeding tube into theintestine. Solid foods are added to the diet gradually.

Patients may not have enough pancreatic enzymes orhormones after surgery. Those who do not have enoughinsulin may develop diabetes. The doctor can give thepatient insulin, other hormones, and enzymes. Thesection “Nutrition for Cancer Patients” has moreinformation.

Radiation TherapyRadiation therapy may cause patients to become

very tired as treatment continues. Resting is important,but doctors usually advise patients to try to stay asactive as they can. In addition, when patients receiveradiation therapy, the skin in the treated area maysometimes become red, dry, and tender.

Radiation therapy to the abdomen may causenausea, vomiting, diarrhea, or other problems withdigestion. The health care team can offer medicine orsuggest diet changes to control these problems. Formost patients, the side effects of radiation therapy goaway when treatment is over.

ChemotherapyThe side effects of chemotherapy depend mainly on

the drugs and the doses the patient receives as well ashow the drugs are given. In addition, as with othertypes of treatment, side effects vary from patient topatient.

Systemic chemotherapy affects rapidly dividingcells throughout the body, including blood cells. Bloodcells fight infection, help the blood to clot, and carryoxygen to all parts of the body. When anticancer drugs

20

WhatYou

NeedTo

KnowAbout

Index

21

damage healthy blood cells, patients are more likely toget infections, may bruise or bleed easily, and may haveless energy. Cells in hair roots and cells that line thedigestive tract also divide rapidly. As a result, patientsmay lose their hair and may have other side effectssuch as poor appetite, nausea and vomiting, diarrhea, ormouth sores. Usually, these side effects go awaygradually during the recovery periods betweentreatments or after treatment is over. The health careteam can suggest ways to relieve side effects.

Pain Control

ain is a common problem for people withpancreatic cancer. The tumor can cause pain by

pressing against nerves and other organs.

The patient’s doctor or a specialist in pain controlcan relieve or reduce pain in several ways:

• Pain medicine—Medicines often can relieve pain.(These medicines may make people drowsy andconstipated, but resting and taking laxatives canhelp.)

• Radiation—High-energy rays can help relieve painby shrinking the tumor.

• Nerve block—The doctor may inject alcohol intothe area around certain nerves in the abdomen toblock the feeling of pain.

• Surgery—The surgeon may cut certain nerves toblock pain.

The doctor may suggest other ways to relieve orreduce pain. For example, massage, acupuncture, oracupressure may be used along with other approachesto help relieve pain. Also, the patient may learnrelaxation techniques such as listening to slow music orbreathing slowly and comfortably.

P

WhatYou

NeedTo

KnowAbout

Index

More information about pain control can be found inthe NCI publications called Pain Control: A Guide forPeople with Cancer and Their Families, Get Relieffrom Cancer Pain, and Understanding Cancer Pain.The Cancer Information Service can send thesebooklets.

Nutrition

eople with pancreatic cancer may not feel likeeating, especially if they are uncomfortable or

tired. Also, the side effects of treatment such as poorappetite, nausea, or vomiting can make eating difficult.Foods may taste different. Nevertheless, patientsshould try to get enough calories and protein to controlweight loss, maintain strength, and promote healing.Also, eating well often helps people with cancer feelbetter and have more energy.

Careful planning and checkups are important.Cancer of the pancreas and its treatment may make ithard for patients to digest food and maintain the properblood sugar level. The doctor will check the patient forweight loss, weakness, and lack of energy. Patientsmay need to take medicines to replace the enzymes andhormones made by the pancreas. The doctor will watchthe patient closely and adjust the doses of thesemedicines.

The doctor, dietitian, or other health care providercan advise patients about ways to maintain a healthydiet. Patients and their families may want to read theNational Cancer Institute booklet Eating Hints forCancer Patients, which contains many usefulsuggestions and recipes. The “National Cancer InstituteBooklets” section tells how to get this publication.

22

P

WhatYou

NeedTo

KnowAbout

Index

23

Followup Care

ollowup care after treatment for pancreatic canceris an important part of the overall treatment plan.

Patients should not hesitate to discuss followup withtheir doctor. Regular checkups ensure that any changesin health are noticed. Any problem that develops can befound and treated. Checkups may include a physicalexam, laboratory tests, and imaging procedures.

F

WhatYou

NeedTo

KnowAbout

Index

24

Support for People with Pancreatic Cancer

iving with a serious disease such as pancreaticcancer is not easy. Some people find they need

help coping with the emotional and practical aspects oftheir disease. Support groups can help. In these groups,patients or their family members get together to sharewhat they have learned about coping with their diseaseand the effects of treatment. Patients may want to talkwith a member of their health care team about finding asupport group.

People living with pancreatic cancer may worryabout the future. They may worry about caring forthemselves or their families, keeping their jobs, orcontinuing daily activities. Concerns about treatmentsand managing side effects, hospital stays, and medicalbills are also common. Doctors, nurses, and othermembers of the health care team can answer questionsabout treatment, diet, working, or other matters.Meeting with a social worker, counselor, or member ofthe clergy can be helpful to those who want to talkabout their feelings or discuss their concerns. Often, asocial worker can suggest resources for financial aid,transportation, home care, emotional support, or otherservices.

Materials on coping with cancer are available fromthe Cancer Information Service (1–800–4–CANCER)and through other sources listed in the “NationalCancer Institute Information Resources” section. TheCancer Information Service can also provideinformation to help patients and their families locateprograms, services, and publications.

L

WhatYou

NeedTo

KnowAbout

Index

25

The Promise of Cancer Research

aboratory scientists are studying the pancreas tolearn more about it. They are studying the

possible causes of pancreatic cancer and are researchingnew ways to detect tumors. They also are looking fornew therapies that may kill cancer cells.

Doctors in clinics and hospitals are conducting manytypes of clinical trials. These are research studies inwhich people take part voluntarily. In these trials,researchers are studying ways to treat pancreatic cancer.Research already has led to advances in treatmentmethods, and researchers continue to search for moreeffective approaches to treat this disease.

Patients who join clinical trials have the first chanceto benefit from new treatments that have shownpromise in earlier research. They also make animportant contribution to medical science by helpingdoctors learn more about the disease. Although clinicaltrials may pose some risks, researchers take verycareful steps to protect their patients.

In trials with people who have pancreatic cancer,doctors are studying new drugs, new combinations ofchemotherapy, and combinations of chemotherapy andradiation before and after surgery.

Biological therapy is also under investigation.Scientists are studying several cancer vaccines to helpthe immune system fight cancer. Other studies usemonoclonal antibodies to slow or stop the growth ofcancer.

Patients who are interested in joining a clinical studyshould talk with their doctor. They may want to readTaking Part in Clinical Trials: What Cancer PatientsNeed To Know. This NCI booklet describes howresearch studies work and explains their possible

L

WhatYou

NeedTo

KnowAbout

Index

benefits and risks. NCI’s cancerTrials™ Web site athttp://cancertrials.nci.nih.gov on the Internetprovides general information about clinical trials. Italso offers detailed information about specific ongoingstudies of pancreatic cancer by linking to PDQ®, NCI’scancer information database. The Cancer InformationService at 1–800–4–CANCER can answer questionsabout cancer clinical trials and can provide informationfrom the PDQ database.

Dictionary

Abdomen (AB-do-men): The part of the body thatcontains the pancreas, stomach, intestines, liver,gallbladder, and other organs.

Acupressure: The application of pressure or localizedmassage to specific sites on the body to controlsymptoms such as pain or nausea. Also used to stopbleeding.

Acupuncture: The technique of inserting thin needlesthrough the skin at specific points on the body tocontrol pain and other symptoms.

Angiography (an-jee-AH-gra-fee): A procedure to x-ray blood vessels. The blood vessels can be seenbecause of an injection of a dye that shows up in the x-ray pictures.

Ascites (ah-SYE-teez): Abnormal buildup of fluid inthe abdomen.

Benign (beh-NINE): Not cancerous; does not invadenearby tissue or spread to other parts of the body.

Bilirubin (bil-ih-ROO-bun): Substance formed whenred blood cells are broken down. Bilirubin is stored inthe gallbladder. The abnormal buildup of bilirubincauses jaundice.

26

WhatYou

NeedTo

KnowAbout

Index

27

Biological therapy (by-o-LAHJ-i-kul): Treatment tostimulate or restore the ability of the immune system tofight infection and disease. Also used to lessen sideeffects that may be caused by some cancer treatments.Also known as immunotherapy, biotherapy, orbiological response modifier (BRM) therapy.

Biopsy (BY-ahp-see): The removal of cells or tissuesfor examination under a microscope. When only asample of tissue is removed, the procedure is called anincisional biopsy or core biopsy. When an entire tumoror lesion is removed, the procedure is called anexcisional biopsy. When a sample of tissue or fluid isremoved with a needle, the procedure is called a needlebiopsy or fine-needle aspiration.

Bypass: A surgical procedure in which the doctorcreates a new pathway for the flow of body fluids.

Cancer: A term for diseases in which abnormal cellsdivide without control. Cancer cells can invade nearbytissues and can spread through the bloodstream andlymphatic system to other parts of the body.

Carcinoma: (kar-sin-O-ma): Cancer that begins in theskin or in tissues that line or cover internal organs.

Cell: The individual unit that makes up all of the tissuesof the body. All living things are made up of one ormore cells.

Chemotherapy (kee-mo-THER-a-pee): Treatment withanticancer drugs.

Clinical trial: A research study that tests how well newmedical treatments or other interventions work inpeople. Each study is designed to test new methods ofscreening, prevention, diagnosis, or treatment of adisease.

Common bile duct: Carries bile from the liver andgallbladder into the duodenum (the upper part of thesmall intestine).

WhatYou

NeedTo

KnowAbout

Index

28

CT scan: Computed tomography scan. A series ofdetailed pictures of areas inside the body, taken fromdifferent angles; the pictures are created by a computerlinked to an x-ray machine. Also called computerizedtomography and computerized axial tomography(CAT) scan

Diabetes (dye-a-BEE-teez): A disease in which thebody does not properly control the amount of sugar inthe blood. As a result, the level of sugar in the blood istoo high. This disease occurs when the body does notproduce enough insulin or does not use it properly.

Distal pancreatectomy (pan-kree-a-TEK-toe-mee):Removal of the body and tail of the pancreas.

Duct (dukt): A tube through which body fluids pass.

Duodenum (doo-ah-DEE-num): The first part of thesmall intestine.

Endoscope (EN-dah-skope): A thin, lighted tube usedto look at tissues inside the body.

Endoscopic retrograde cholangiopancreatography(en-dah-SKAH-pik RET-ro-grade ko-LAN-jee-o-PAN-kree-a-TOG-ra-fee): ERCP. A procedure to x-ray thepancreatic duct, hepatic duct, common bile duct,duodenal papilla, and gallbladder. In this procedure, athin, lighted tube (endoscope) is passed through themouth and down into the first part of the smallintestine (duodenum). A smaller tube (catheter) is theninserted through the endoscope into the bile andpancreatic ducts. A dye is injected through the catheterinto the ducts, and an x-ray is taken.

Endoscopic ultrasound (en-dah-SKAH-pik): EUS. Aprocedure in which sound waves (called ultrasound)are bounced off internal organs to make a picture(sonogram). A thin, lighted tube (endoscope) is passedthrough the mouth and down into the digestive tract.

Enzyme: A protein that speeds up chemical reactions inthe body.

WhatYou

NeedTo

KnowAbout

Index

29

Fine-needle aspiration: The removal of tissue or fluidwith a needle for examination under a microscope.Also called needle biopsy.

Gallbladder (GAWL-blad-er): The pear-shaped organfound below the liver. Bile is concentrated and storedin the gallbladder.

Gland: An organ that produces and releases one ormore substances for use in the body. Some glandsproduce fluids that affect tissues or organs. Othersproduce hormones.

Hormones: Chemicals produced by glands in the bodyand circulated in the bloodstream. Hormones controlthe actions of certain cells or organs.

Imaging procedures: Methods of producing pictures ofareas inside the body.

Insulin (IN-su-lin): A hormone made by the islet cellsof the pancreas. Insulin controls the amount of sugar inthe blood by moving it into the cells, where it can beused by the body for energy.

Intestine (in-TES-tin): A long, tube-shaped organ inthe abdomen that completes the process of digestion.There is both a large intestine and a small intestine.Also called the bowel.

Intravenous (in-tra-VEE-nus): IV. Within a bloodvessel.

Islet cell cancer (EYE-let): Cancer arising from cellsin the islets of Langerhans, which are found in thepancreas. Also called endocrine cancer.

Jaundice (JAWN-dis): A condition in which the skinand the whites of the eyes become yellow, urinedarkens, and the color of stool becomes lighter thannormal. Jaundice occurs when the liver is not workingproperly or when a bile duct is blocked.

WhatYou

NeedTo

KnowAbout

Index

30

Laparoscopy (lap-a-RAHS-ko-pee): The insertion of athin, lighted tube (called a laparoscope) through theabdominal wall to inspect the inside of the abdomenand remove tissue samples.

Liver: A large, glandular organ located in the upperabdomen. The liver cleanses the blood and aids indigestion by secreting bile.

Local therapy: Treatment that affects cells in the tumorand the area close to it.

Lymph node: A rounded mass of lymphatic tissue thatis surrounded by a capsule of connective tissue. Alsoknown as a lymph gland. Lymph nodes are spread outalong lymphatic vessels and contain manylymphocytes, which filter the lymphatic fluid (lymph).

Lymphatic system (lim-FAT-ik): The tissues and organsthat produce, store, and carry white blood cells thatfight infection and other diseases. This system includesthe bone marrow, spleen, thymus, lymph nodes, and anetwork of thin tubes that carry lymph and white bloodcells. These tubes branch, like blood vessels, into all ofthe tissues of the body.

Malignant (ma-LIG-nant): Cancerous; a growth with atendency to invade and destroy nearby tissue andspread to other parts of the body.

Medical oncologist (on-KOL-o-jist): A doctor whospecializes in diagnosing and treating cancer usingchemotherapy, hormonal therapy, and biologicaltherapy. A medical oncologist often serves as the maincaretaker of someone who has cancer and coordinatestreatment provided by other specialists.

Metastasis (meh-TAS-ta-sis): The spread of cancerfrom one part of the body to another. Tumors formedfrom cells that have spread are called “secondarytumors” and contain cells that are like those in theoriginal (primary) tumor. The plural is metastases(meh-TAS-ta-seez).

WhatYou

NeedTo

KnowAbout

Index

31

Metastasize (meh-TAS-ta-size): To spread from onepart of the body to another. When cancer cellsmetastasize and form secondary tumors, the cells in themetastatic tumor are like those in the original (primary)tumor.

Monoclonal antibodies (MAH-no-KLO-nul AN-tih-BAH-deez): Laboratory-produced substances that canlocate and bind to cancer cells wherever they are in thebody. Many monoclonal antibodies are used in cancerdetection or therapy; each one recognizes a differentprotein on certain cancer cells. Monoclonal antibodiescan be used alone, or they can be used to deliver drugs,toxins, or radioactive material directly to a tumor.

Oncologist (on-KOL-o-jist): A doctor who specializesin treating cancer. Some oncologists specialize in aparticular type of cancer treatment. For example, aradiation oncologist specializes in treating cancer withradiation.

Outpatient: A patient who visits a health care facilityfor diagnosis or treatment without spending the night.Sometimes called a day patient.

Palliative therapy: Treatment given to relievesymptoms caused by advanced cancer. Palliativetherapy does not alter the course of a disease butimproves the quality of life.

Pancreas: A glandular organ located in the abdomen. It makes pancreatic juices, which contain enzymes thataid in digestion, and it produces several hormones,including insulin. The pancreas is surrounded by thestomach, intestines, and other organs.

Pancreatectomy (pan-kree-a-TEK-toe-mee): Surgery toremove the pancreas. In a total pancreatectomy, aportion of the stomach, the duodenum, common bileduct, gallbladder, spleen, and nearby lymph nodes alsoare removed.

WhatYou

NeedTo

KnowAbout

Index

32

Pancreatic cancer: A disease in which malignant(cancer) cells are found in the tissues of the pancreas.Also called exocrine cancer.

Pancreatic ducts: A system of ducts in the pancreas.Pancreatic juices containing enzymes are released intothese ducts and flow into the small intestine.

Pancreatic juices: Fluids made by the pancreas.Pancreatic juices contain proteins called enzymes thataid in digestion.

Pancreatitis: Inflammation of the pancreas. Chronicpancreatitis may cause diabetes and problems withdigestion. Pain is the primary symptom.

Pathologist (pa-THOL-o-jist): A doctor who identifiesdiseases by studying cells and tissues under amicroscope.

Percutaneous transhepatic cholangiography (per-kyoo-TAY-nee-us trans-heh-PAT-ik ko-LAN-jee-AH-gra-fee): A procedure to x-ray the hepatic and commonbile ducts. A contrasting agent is injected into the liveror bile duct, and the ducts are then x-rayed to find thepoint of obstruction. Also called PTC.

Peritoneum (PAIR-ih-toe-NEE-um): The tissue thatlines the abdominal wall and covers most of the organsin the abdomen.

Primary tumor: The original tumor.

Quality of life: The overall enjoyment of life. Manyclinical trials measure aspects of an individual’s senseof well-being and ability to perform various tasks toassess the effects of cancer and its treatment on thequality of life.

Radiation oncologist (ray-dee-AY-shun on-KOL-o-jist): A doctor who specializes in using radiation to treatcancer.

WhatYou

NeedTo

KnowAbout

Index

33

Radiation therapy (ray-dee-AY-shun): The use of high-energy radiation from x-rays, gamma rays, neutrons,and other sources to kill cancer cells and shrinktumors. Radiation may come from a machine outsidethe body (external-beam radiation therapy), or it maycome from radioactive material placed in the body inthe area near cancer cells (internal radiation therapy,implant radiation, or brachytherapy). Systemicradiation therapy uses a radioactive substance, such asa radiolabeled monoclonal antibody, that circulatesthroughout the body. Also called radiotherapy.

Risk factor: Anything that increases a person’s chanceof developing a disease, including a substance, agent,genetic alteration, trait, habit, or condition.

Side effects: Problems that occur when treatmentaffects healthy cells. Common side effects of cancertreatment are fatigue, nausea, vomiting, decreasedblood cell counts, hair loss, and mouth sores.

Spleen: An organ that is part of the lymphatic system.The spleen produces lymphocytes, filters the blood,stores blood cells, and destroys old blood cells. It islocated on the left side of the abdomen near thestomach.

Stage: The extent of a cancer, especially whether thedisease has spread from the original site to other partsof the body.

Staging: Performing exams and tests to learn the extentof the cancer within the body, especially whether thedisease has spread from the original site to other partsof the body.

Stent: A device placed in a body structure (such as ablood vessel or the gastrointestinal tract) to providesupport and keep the structure open.

Surgeon: A doctor who removes or repairs a part of thebody by operating on the patient.

WhatYou

NeedTo

KnowAbout

Index

Surgery: A procedure to remove or repair a part of thebody or to find out whether disease is present. Anoperation.

Symptom: An indication that a person has a conditionor disease. Some examples of symptoms are headache,fever, fatigue, nausea, vomiting, and pain.

Systemic therapy (sis-TEM-ik): Treatment usingsubstances that travel through the bloodstream,reaching and affecting cells all over the body.

Tissue (TISH-oo): A group or layer of cells that arealike in type and work together to perform a specificfunction.

Total pancreatectomy: Surgery to remove the entirepancreas.

Transabdominal ultrasound: A procedure used toexamine the organs in the abdomen. The ultrasounddevice is pressed firmly against the skin of theabdomen. Sound waves from the device bounce offtissues and create echoes. A computer uses the echoesto make a picture called a sonogram.

Tumor (TOO-mer): An abnormal mass of tissue thatresults from excessive cell division. Tumors perform nouseful body function. They may be benign (notcancerous) or malignant (cancerous).

Ultrasonography (UL-tra-son-OG-ra-fee): A procedurein which sound waves (called ultrasound) are bouncedoff tissues and the echoes produce a picture(sonogram).

Vaccine: A substance or group of substances meant tocause the immune system to respond to a tumor or tomicroorganisms, such as bacteria or viruses.

Whipple procedure: A type of surgery used to treatpancreatic cancer. The head of the pancreas, theduodenum, a portion of the stomach, and other nearbytissues are removed.

34

WhatYou

NeedTo

KnowAbout

Index

National Cancer Institute InformationResources

ou may want more information for yourself, yourfamily, and your doctor. The following National

Cancer Institute (NCI) services are available to helpyou.

TelephoneCancer Information Service (CIS)

Provides accurate, up-to-date information on cancerto patients and their families, health professionals, andthe general public. Information specialists translate thelatest scientific information into understandablelanguage and respond in English, Spanish, or on TTYequipment.

Toll-free: 1–800–4–CANCER (1–800–422–6237)

TTY: 1–800–332–8615

InternetThese Web sites may be useful:

http://cancer.gov

NCI’s primary Web site; contains information aboutthe Institute and its programs.

http://cancertrials.nci.nih.gov

cancerTrials™; NCI’s comprehensive clinical trialsinformation center for patients, health professionals,and the public. Includes information on understandingtrials, deciding whether to participate in a trial, findingspecific trials, plus research news and other resources.

35

Y

WhatYou

NeedTo

KnowAbout

Index

http://cancernet.nci.nih.gov

CancerNet™; contains material for healthprofessionals, patients, and the public, includinginformation from PDQ® about cancer treatment,screening, prevention, genetics, supportive care, andclinical trials; CANCERLIT®, a bibliographicdatabase; and a dictionary of medical terms related tocancer and its treatment.

FaxCancerFax®

Includes NCI information about cancer treatment,screening, prevention, and supportive care. To obtain acontents list, dial 1–800–624–2511 or 301–402–5874from your touch-tone phone or fax machine hand setand follow the recorded instructions.

National Cancer Institute Booklets

ational Cancer Institute (NCI) publications can beordered by writing to the address below, and

some can be viewed and downloaded fromhttp://cancer.gov/publications on the Internet.

Publications Ordering ServiceNational Cancer InstituteBuilding 31, Room 10A3131 Center Drive, MSC 2580Bethesda, MD 20892–2580

In addition, people in the United States and itsterritories may order these and other NCI booklets bycalling the Cancer Information Service at1–800–4–CANCER. They may also order many NCIpublications on-line at http://cancer.gov/publications.

36

N

WhatYou

NeedTo

KnowAbout

Index

Booklets About Cancer Treatment• Chemotherapy and You: A Guide to Self-Help

During Treatment

• Eating Hints for Cancer Patients

• Get Relief from Cancer Pain

• Understanding Cancer Pain

• Pain Control: A Guide for People with Cancer andTheir Families

• Help Yourself During Chemotherapy: 4 Steps forPatients

• Radiation Therapy and You: A Guide to Self-HelpDuring Treatment

• Taking Part in Clinical Trials: What CancerPatients Need To Know

• La quimioterapia y usted: Una guía de autoayudadurante el tratamiento del cáncer (Chemotherapyand You: A Guide to Self-Help During Treatment forCancer)

• El dolor relacionado con el cáncer (UnderstandingCancer Pain)

• El tratamiento de radioterapia: Guía para elpaciente durante el tratamiento (Radiation and You:A Guide to Self-Help During Treatment)

• ¿En qué consisten los estudios clínicos? Un folletopara los pacientes de cáncer (What Are ClinicalTrials All About? A Guide for Cancer Patients)

37

WhatYou

NeedTo

KnowAbout

Index

Booklets About Living With Cancer• Advanced Cancer: Living Each Day

• Taking Time: Support for People With Cancer andthe People Who Care About Them

• When Cancer Recurs: Meeting the Challenge

38

WhatYou

NeedTo

KnowAbout

Index

This booklet was written and published by the NationalCancer Institute (NCI), 31 Center Drive, MSC 2580,Bethesda, MD 20892–2580. The NCI, the largestcomponent of the National Institutes of Health,coordinates a national research program on cancercauses and prevention, detection and diagnosis, andtreatment. In addition, NCI’s mission includesdissemination of information about cancer to patients,the public, and health professionals.

The National Cancer Act, passed by Congress in 1971,made research a National priority. Since that time, theNCI, the lead Federal agency for cancer research, hascollaborated with top researchers and facilities acrossthe country to conduct innovative research leading toprogress in cancer prevention, detection, diagnosis, andtreatment. These efforts have resulted in a decrease inthe overall cancer death rate, and have helped improveand extend the lives of millions of Americans.

The written text of NCI material is in the publicdomain and is not subject to copyright restrictions.Special permission to reproduce or translate NCIwritten text is not necessary. However, we wouldappreciate a credit line and a copy of any translatedmaterial.

The copyright for artwork developed for NCI byprivate sector designers, photographers, and illustratorsunder contract to the Government remains in the handsof the originators. Permission to use or reproduce thesematerials is needed. In many cases, permission will begranted, but a credit line and/or fees for usage may berequired. To learn if permission is required, or to obtainpermission to reproduce NCI artwork, write to:Communication Services Branch, Office ofCommunications, National Cancer Institute, Room10A28, 31 Center Drive, MSC 2580, Bethesda, MD20892–2580.

WhatYou

NeedTo

KnowAbout

Index

NIH Publication No. 01–1560Revised July 2001

Printed September 2001

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICESPublic Health Service

National Institutes of HealthP034

NATIONAL INSTITUTES OF HEALTHNational Cancer Institute

™

WhatYou

NeedTo

KnowAbout

Index