PDF information booklet-Click to open - Eric Kortz, MD

Also available at NCCN.com

VersioN 1.2012

NCCN Guidelines for Patients™

Pan

crea

tic C

ance

r

Dedicated to the memory of Randy Pausch

2NCCN Guidelines for Patients™: Pancreatic Cancer Version 1.2012

Its purposeLearning that you have cancer can be overwhelming. The goal of this booklet is to help you get the best cancer treatment. It has a special step-by-step guide of the cancer tests and treatments recommended by experts in pancreatic cancer.

Supported by the NCCN Foundation The NCCN Foundation supports the mission of the National Comprehensive Cancer Network® (NCCN®) to improve the care of patients with cancer. One of its aims is to raise funds to create a library of booklets for patients. Learn more about the NCCN Foundation at www.nccn.com/nccn-foundation.

The source of the informationNCCN is a not-for-profit network of 21 of the world’s leading cancer centers. Pancreatic cancer experts from NCCN have written treatment guidelines for doctors taking care of patients with pancreatic cancer. These treatment guidelines suggest what the best practice is for cancer care. The information in this booklet is based on these guidelines.

For more informationThis booklet focuses on the treatment of pancreatic cancer. More information on NCCN, pancreatic cancer, and other cancers can be found on NCCN.com.

© 2012 National Comprehensive Cancer Network, Inc. All rights reserved. The NCCN Guidelines for Patients™ and illustrations herein may not be reproduced in any form for any purpose without the express written permission of NCCN.

About this booklet


Part 1: About pancreatic cancerTable of contents

How to use this booklet

Part 1 – About pancreatic cancer Explains the growth and spread of pancreatic cancer.

Part 2 – Cancer tests Describes the suggested tests in Part 5 used to plan treatment.

Part 3 – Cancer treatmentsDescribes the suggested treatments in Part 5 for pancreatic cancer.

Part 4 – Clinical trialsExplains a type of research that is a treatment option in Part 5.

Part 5 – A step-by-step treatment guidePresents the recommended course of action from diagnosis to after cancer treatment.

Part 6 – Beyond cancer treatmentPresents supportive care for the physical and emotional challenges of cancer.

Part 7 – Treatment planningOffers information to help you get a good treatment plan.

Part 8 – DictionaryThe definitions of medical and other terms are listed.

Credits

Index

45

10

19

27

33

46

53

61

6670


How to use this booklet

Who should read this booklet? This booklet is about treatment for ductal adenocarcinoma of the pancreas. About 90 out of 100 people with pancreatic cancer have ductal adenocarcinoma. This booklet may be helpful for patients, caregivers, and other family and friends dealing with this cancer.

Where should I start reading? Reading the booklet in order from the beginning to the end may be the most helpful if you do not know much about pancreatic cancer. The first parts of the booklet provide basic information that will make it easier to understand the latter parts. As you read through this booklet, you may find it helpful to create a list of questions to ask your doctor.

Does the whole booklet apply to me? There is important information in this booklet for many situations. Thus, not everyone will get every test and treatment listed in this booklet. The treatment guide in Part 5 covers what the NCCN doctors feel is the most useful based on science and their experience. However, the suggestions in Part 5 may not be the right for you. Your doctor may suggest other tests or treatments based on your medical history and other factors. This booklet does not replace the knowledge and suggestions of your doctors.

What pages should I read? To help you use this booklet, each topic is described at the start of Parts 1 – 7. Page numbers are listed so you can flip right to the topic of interest. Your treatment team can also point out the parts that apply to you and give you more information. Reading this booklet at home may help you absorb what your doctors have said and prepare for treatment.

Help! I don’t know these words! In this booklet, many medical words are included that describe cancer, tests, and treatments. These are words that you will likely hear your treatment team use in the months and years ahead. Most of the information may be new to you, and it may be a lot to learn. Don’t be discouraged as you read. Keep reading and review the information.

Words that you may not know are defined in the text or the sidebar. Words with sidebar definitions are underlined when first used on a page. All definitions are listed in the Dictionary in Part 8. Acronyms are also listed in the text or the sidebar. Acronyms are words formed from the first letters of other words. One example is U.S. for United States.


Part 1: About pancreatic cancer

Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

You’ve learned that you have pancreatic cancer. It’s common to feel shocked and confused. Part 1 reviews some basics about pancreatic cancer that may help you start to cope. These basics may also help you start planning for treatment.

1.1 – What is the pancreas? Explains where the pancreas is and what it does.

1.2 – How does pancreatic cancer start? Describes the types of pancreatic cells where cancer begins.

1.3 – How does pancreatic cancer spread? Explains the body systems by which pancreatic cancer spreads.

1.4 – Tools Webpages with basics about pancreatic cancer are listed.

67

8

9


1.1 What is the pancreas?

The pancreas is a gland found behind the stomach. It is about 6 inches long and has three main parts. The widest part is called the head. The middle of the gland is the body. The narrow end is called the tail.

The pancreas makes hormones, such as insulin. It also makes proteins, called enzymes, that help to digest food. Enzymes are made in the small ducts of the pancreas. The small ducts connect to the main duct that extends from the tail to the head of the pancreas.

Near the pancreas under the liver is the gallbladder. The gallbladder makes bile that also helps to digest food. Bile flows through the common bile duct into the main pancreatic duct. From the main pancreatic duct, bile and enzymes empty into the duodenum. See Figure 1.

Figure 1. Pancreas and nearby organsIllustration Copyright © 2012 Nucleus Medical Media, All rights reserved. www.nucleusinc.com


Part 1: About pancreatic cancer

Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:Common bile duct: A tube-shaped organ that transports digestive fluid from the liver into the gut

Duodenum: First part of the small intestine, which absorbs nutrients from eaten food

Hormones: Chemicals in the body that activate cells or organs

Insulin: A chemical that controls the amount of sugar in the blood

Liver: An organ that removes waste from the blood

Main pancreatic duct: A tube-shaped vessel that drains digestive fluids from the pancreas into the gut

Primary tumor: First mass of cancer cells in the body

1.2 How does pancreatic cancer start?

Definitions:Cells are the building blocks that form tissue in the body. Normal cells grow and then divide to form new cells. New cells are formed as the body needs them. When normal cells grow old or get damaged, they die. Cancer cells don’t do this. Cancer cells make new cells that aren’t needed and don’t die quickly when old or damaged. See Figure 2. Over time, cancer cells grow and divide enough to form a primary tumor. Primary tumors can grow large and invade nearby tissues.

Genes are instructions in cells for making new cells and controlling how cells behave. Changes in genes turn normal cells into cancer cells. Within the pancreas, exocrine or endocrine cells become cancer cells. Endocrine cells make hormones. Exocrine cells make enzymes. There is more than one type of exocrine cell. About 90 out of 100 pancreatic cancers start in exocrine cells that line the ducts. This type of pancreatic cancer is called ductal adenocarcinoma and is the focus of this booklet.

Figure 2. Normal versus cancer cell growthIllustration Copyright © 2012 Nucleus Medical Media, All rights reserved. www.nucleusinc.com


1.3 How does pancreatic cancer spread?

Unlike normal cells, cancer cells can spread and form tumors in other parts of the body. The spread of cancer makes it dangerous. Cancer can take over vital organs and cause them to stop working.

Cancer that has spread is called a metastasis. Cancer in a nearby body part is called a local metastasis. Cancer in a body part far from the primary tumor is called a distant metastasis.

Figure 3. Lymph nodes and vesselsIllustration Copyright © 2012 Nucleus Medical Media, All rights reserved. www.nucleusinc.com

Cancer can spread to distant sites through blood. Two major blood vessels lie behind the pancreas. The superior mesenteric artery supplies the intestines with blood. The superior mesenteric vein returns blood to the heart.

Cancer can also spread through lymph. Lymph is a clear fluid that gives cells water and food. It also has white blood cells that fight germs. Lymph nodes filter lymph and remove the germs. Lymph travels throughout the body in vessels like blood does. As seen in Figure 3, lymph vessels and nodes are found everywhere in the body.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

1.4 Tools

WebpagesAmerican Cancer Societywww.cancer.org/cancer/pancreaticcancer/index

National Cancer Institutewww.cancer.gov/cancertopics/pdq/treatment/pancreatic/Patient www.cancer.gov/cancertopics/pdq/treatment/pancreatic/Patient/page4 www.cancer.gov/cancertopics/pdq/treatment/pancreatic/Patient/page5

NCCNwww.nccn.com/type-of-cancer/pancreatic-cancer.html

Pancreatic Cancer Action Networkwww.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/index.php

• The pancreas helps digest food.

• Pancreatic cancer often starts in the cells that line the ducts.

• Cancer cells form a tumor since they don’t die as they should.

• Cancer cells can spread to other body parts through lymph or blood.

Review of Part 1


Part 2: Cancer tests

Treatment planning starts with testing. The tests used for pancreatic cancer are described on the next pages. This information can help you use the treatment guide in Part 5. It may also help you know what to expect during testing. Not every person with pancreatic cancer will receive every test listed.

2.1 – General health tests A medical history and body exam are described.

2.2 – Imaging tests The tests that take pictures of the insides of the body are described.

2.3 – Blood tests Common signs of disease that are found in blood are described.

2.4 – Tissue tests The tests of body tissue or fluid for cancer cells are described.

2.5 – Tools Questions to ask your doctor about testing are listed along with helpful webpages.

11

17

12

15

16


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

2.1 General health tests

Medical history Before and after cancer treatment, your doctor will assess your medical history. Your medical history includes any health events in your life and any medications you’ve taken. This information may affect which cancer treatment is best for you. It may help to make a list of old and new medications while at home to bring to your doctor’s office. Since some health problems run in families, your doctor may want to ask about the medical history of your blood relatives.

Physical exam Doctors often give a physical exam along with taking a medical history. A physical exam is a review of your body for signs of disease. During this exam, your doctor will listen to your lungs, heart, and gut. Parts of your body will likely be felt to see if organs are of normal size, are soft or hard, or cause pain when touched. Your doctor will also check for jaundice. Jaundice is a yellowing of the skin and eyes. See Figure 4. It can be caused by a tumor blocking a duct that drains bile from the liver.

Figure 4. Jaundice of the eyesCholangitis Jaundice by Bobjgalindo available atcommons.wikimedia.org/wiki/File:Cholangitis_Jaundice.jpg under a Creative Commons Attribution-Share Alike 3.0 Unported license.

Notes:

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________


2.2 imaging tests

Imaging tests allow your doctors to see inside your body. Pictures (images) are made with scanning machines or scoping tools. The images may show if you have a tumor and its size.

Imaging tests are often easy to undergo. Before the test, you may be asked to stop eating or drinking for several hours. You also should remove any metal objects that are on your body. It may be helpful to have a loved one come with you for the test. You may want someone to drive you home after the test.

ScansScanning machines are large and have a tunnel in the middle. During the test, you will need to lie on a table that moves slowly through the tunnel. Pillows or straps may be used to keep you still during the test. You will be alone, but a technician will operate the machine in a nearby room. He or she will be able to see, hear, and speak with you at all times.

As the machine takes pictures, you may hear buzzing, clicking, or whirring sounds. Earplugs are sometimes worn to block these sounds. A computer combines all pictures into one detailed picture. An imaging test can take between 30 to 60 minutes to complete.

Often, there are no side effects. If radiation is used, the amount is small. You will likely be able to resume your activities right away unless you took a sedative. You may not learn of the results for a few days since a

radiologist needs to see the pictures. The scanning tests recommended in Part 5 include:

CT. The first test for pancreatic cancer is often a CT (computed tomography) scan. A CT scan takes many pictures of a body part from different angles using x-rays. See Figure 5. A pancreatic protocol CT allows doctors to see the pancreas, blood vessels, and very tiny tumors.

Before the test, you may be given a contrast dye to make the pictures clearer. The dye will be injected into your vein. It may cause you to feel flushed or get hives. Rarely, serious allergic reactions occur. Tell your doctor if you have had bad reactions before.

Figure 5. CT scan


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Allergic reaction: Symptoms caused when the body is trying to rid itself of outside agents

Bile: Yellowish-brown fluid made by the liver

Bile ducts: Small tube-shaped organs that drain bile from the liver

Hives: Itchy, swollen, and red skin caused by the body ridding itself of an invader

Pancreas protocol MRI: Imaging methods using MRI that clearly show the pancreas and nearby organs

Radiologist: A doctor who’s an expert in reading imaging tests

Sedative: A drug that helps a person to relax or go to sleep

2.2 imaging tests

MRI. An MRI (magnetic resonance imaging) scan uses radio waves and powerful magnets to take pictures inside the body. It does not use x-rays. An MRI may cause your body to feel a bit warm. Like a CT scan, a contrast dye may be used. A pancreatic protocol MRI may be used instead of CT to view the pancreas.

MRCP. MRCP (magnetic resonance cholangiopancreatography) is an MRI scan that makes very clear images of the pancreas and bile ducts. No contrast dye is used because bile and other fluids serve as contrast. An MRCP takes about 10 minutes, but it is often done along with a normal MRI scan.

ScopesSome imaging tests insert a tool into the body to search for disease. An endoscope is a tool commonly used. An endoscope has a thin, long tube that can be guided into the body, often through the mouth. At the end of the tube is a very small light and camera lens. At the other end of the endoscope is an eyepiece that your doctor looks through to see the images shown by the camera. To use the endoscope, your doctor will give you a sedative. After the test, your throat may feel sore. You may also feel bloated from air that was pumped into your body for better viewing.

EUS. EUS (endoscopic ultrasound) uses an endoscope that is fitted with a small ultrasound probe. The ultrasound probe bounces sound waves off your pancreas and other organs to make images. This test takes about 15 to 45 minutes. This test is often done to get a close look at your pancreas and any tumor that might be in it. Your doctors can also do a tissue test (see Part 2.4) at the same time to confirm if a tumor is cancer.


2.2 imaging tests

ERCP. An ERCP (endoscopic retrograde cholangiopancreatography) uses an endoscope and x-rays to make images. First, a tube is passed through the open channel of the endoscope to inject contrast into the pancreatic and bile ducts. See Figure 6. The contrast allows the pancreas and ducts to be seen on x-rays. Next, images of the pancreas and bile ducts are made using an x-ray machine. An ERCP takes about 30 to 90 minutes to complete.

Laparoscopy. This test is a type of surgery that allows your doctors to see organs in the abdomen. It uses a laparoscope—a tool like an endoscope. Unlike EUS and ERCP, laparoscopy requires the laparoscope be inserted through a tiny cut in the abdomen. Laparoscopy is done under general anesthesia in the operating room and takes about 30 minutes. After the surgery, you may feel tired and may have pain. You may have a small scar after the cut has healed.

Figure 6. ERCP

Illustration Copyright © 2012 Nucleus Medical Media, All rights reserved. www.nucleusinc.com

Cancer staging Cancer staging is a way to rate the extent of the cancer. Pancreatic cancer has five stages (stage 0 – stage IV). The stages are defined by the growth of the primary tumor and its spread to other sites in the body.

Sometimes, cancer is staged twice. The first stage is based on tests before surgery. The second stage is based on tests of the tissue removed during surgical treatment for patients who have surgery.

Some doctors use cancer staging to plan treatment. In Part 5 A step-by-step treatment guide, cancer staging isn’t used to recommend which tests and treatments to receive. Rather, recommendations are based on three potential categories of pancreatic cancer: localized cancer that can be treated with surgery, locally advanced cancer, and distant metastases.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Abdomen: The belly area

Bile ducts: Small tube-shaped organs that drain digestive fluid from the liver

Distant metastasis: The spread of cancer cells from the first tumor to a far site

Endoscope: A thin, long tube with a light and camera

General anesthesia: A controlled loss of wakefulness from drugs

Localized cancer: A tumor that hasn’t grown outside the pancreas

Locally advanced cancer: A tumor that has grown outside the pancreas into nearby structures

Primary tumor: First mass of cancer cells in the body

2.3 Blood tests

Blood tests are used to check for diseases, how well organs are working, and treatment results. One common blood test is a complete blood cell count. This test counts the number of blood cells in a blood sample. Too few or too many cells may signal there’s a problem.

Another common test is measurement of blood chemistry levels. This test assesses if chemicals in the blood are too low or high. Abnormal levels can be caused by cancer or other diseases.

One example is liver function tests. These blood tests assess for chemicals that are made or processed by the liver. Levels that are too high or low signal that the liver is not working well.

CA 19-9 is a blood protein that is often high in people with pancreatic cancer. High levels can be caused by pancreatic cancer or other health problems. It is not used to confirm that you have pancreatic cancer but is used to check results of cancer treatment.

Bilirubin gives bile its color. There may be too much bilirubin in the blood if a tumor is blocking a bile duct. Too much bilirubin causes a yellowing of the skin and eyes, a condition called jaundice. It also increases CA 19-9 blood levels.

Your doctor may change your treatment plan based on blood tests. How many times your blood will be tested depends on your cancer treatments and other factors. Common side effects of blood tests are bruising and dizziness.

AcronymsEUS = Endoscopic ultrasound


2.4 Tissue tests

Imaging tests may fail to show cancer. Thus, your doctor may want you to have a biopsy. A biopsy is the removal of a tissue or fluid sample from the body for testing. The sample is sent to a lab and examined with a microscope for cancer cells. Lab tests will find cancer cells if any are present in a tissue sample. If no cancer is found, a different spot of the pancreas may be biopsied if your doctors still think there’s cancer.

Before a biopsy, you may be asked to stop eating, stop taking some medicines, or stop smoking. FNA (fine-needle aspiration) is the most common biopsy for pancreatic cancer. FNA can be done during EUS with a needle attached to the endoscope. The needle is inserted through the stomach or duodenum into the tumor. A second FNA method is to insert a thin needle through the skin and guide it into the tumor using a CT scan for guidance. This method is called a percutaneous FNA. For this FNA, you will be given local anesthesia. Besides FNA, a biopsy may be done during surgery or a laparoscopy.

A biopsy is often done in less than 1 hour. It is generally a safe test. You may have some pain after a percutaneous FNA. After EUS-FNA, your throat may be sore and you may feel bloated from air pumped into your body.

Definitions:

Duodenum: First part of the small intestine, which absorbs nutrients from food

Endoscope: A thin tube with a light and camera to see inside the body

EUS: A test that uses a thin, lighted tube to see inside the body

Laparoscopy: A surgical test that inserts a thin, lighted tube into a small cut to see inside the belly area

Local anesthesia: A loss of feeling in a small area of the body from the injection of drugs

Microscope: A tool that uses lenses to see things the eyes can’t

AcronymsCT = Computed tomography

EUS = Endoscopic ultrasound


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

2.5 Tools

• What tests will I have?

• Do you recommend that I have a biopsy? If so, why?

• Where will the tests take place? Will I have to go to the hospital?

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

• Will it hurt? Will I need anesthesia?

• What are the risks?

• How do I prepare for testing? Should I bring someone with me?

• How soon will I know the results and who will explain them to me?

• If a biopsy is done, will I get a copy of the results?

• Who will talk with me about the next steps? When?

Questions about testing to ask your doctor


2.5 Tools

WebpagesAmerican Cancer Societywww.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-diagnosis www.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-staging

National Cancer Institutewww.cancer.gov/cancertopics/wyntk/pancreas/page6www.cancer.gov/cancertopics/pdq/treatment/pancreatic/Patient#Keypoint5 www.cancer.gov/cancertopics/wyntk/pancreas/page7www.cancer.gov/cancertopics/factsheet/Detection/staging

NCCNwww.nccn.com/type-of-cancer/pancreatic-cancer/798.html

Pancreatic Cancer Action Networkwww.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diagnosis/index.php www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/treatment/Treatment_by_stage.php

• Tests are used to find cancer and plan treatment.

• Your health history and a body exam inform your doctor about your health.

• Blood tests check for signs of disease.

• Tests that take pictures of the inside of your body may show cancer.

• Tests of tissue or fluid from your body may find cancer.

Review of Part 2


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Part 3: Cancer treatments

There is more than one treatment for pancreatic cancer. The main types are described on the next pages. This information may help you use the treatment guide in Part 5. It may also help you know what to expect during treatment. Not every person with pancreatic cancer will receive every treatment listed.

3.1 – Surgery The operations used to remove pancreatic tumors from the body are described.

3.2 – Radiation therapy The uses of radiation to treat pancreatic cancer are described.

3.3 – Chemotherapy Chemotherapy drugs for pancreatic cancer are described.

3.4 – Targeted therapy Targeted drugs for pancreatic cancer are described.

3.5 – Tools Questions to ask your doctor about treatments are listed along with helpful webpages.

20

25

21

23

24


3.1 surgery

There are three types of surgery used for pancreatic cancer. The type of surgery you receive depends on where the tumor is in the pancreas. The goal of surgery is to remove all of the cancer. To do so, the tumor and some normal-looking tissue around its edge are removed. The normal-looking tissue is called the surgical margin.

The surgery for a tumor in the head of the pancreas is called a pancreaticoduodectomy, also known as a Whipple procedure. This surgery removes the pancreatic head, the gallbladder, duodenum, part of the bile duct, and often part of the stomach. Some of the lymph nodes near your pancreas are often removed to test for cancer. Once the cancer has been removed, your surgeons will connect your organs so you can digest food.

The surgery for a tumor in the body or tail of the pancreas is called a distal pancreatectomy. This surgery removes both the body and tail and some nearby lymph nodes. Sometimes, the spleen and its blood vessels are removed as well.

The surgery for cancer in a large portion of the pancreas is called a total pancreatectomy. This surgery removes the entire pancreas. Also removed are the gallbladder, duodenum, part of the bile duct and stomach, nearby lymph nodes, and sometimes the spleen. This surgery isn’t done often.

When and why treatments are given can be hard to understand. Part 5 gives full details. Here, the terms that describe the order of treatments are explained.

The main treatment used to rid your body of cancer is called the primary treatment. For pancreatic cancer, surgery can be used to remove the cancer. Chemotherapy with or without targeted therapy may be used as a primary treatment to control cancer growth for cancer that has spread outside the pancreas. Radiation therapy can also be given as a primary treatment for locally advanced tumors.

Neoadjuvant treatment may be given to shrink the tumor before surgery. Adjuvant treatment is given after surgery to try to kill any remaining cancer cells and reduce the chance of the cancer returning. For pancreatic cancer, chemotherapy and radiation therapy can be used as neoadjuvant or adjuvant treatments.

First-line treatment is the first set of treatments given. If first-line treatment fails, second-line treatment is the next treatment or set of treatments given.

Order of treatments


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Bile ducts: Small tube-shaped organs that drain digestive fluid from the liver

Contrast: A dye put into your body to make pictures from imaging tests clearer

Duodenum: First part of the small intestine, which absorbs nutrients from food

Gallbladder: A small organ that holds digestive fluid from the liver

Lymph nodes: Disease-fighting cells located throughout the body

Spleen: An organ near the stomach that helps protect the body against disease

! See pages 6 – 7 for details of organs near the pancreas.

3.2 radiation therapy

Definitions:Radiation therapy uses high-energy rays to treat cancer. The rays damage a cell’s instructions for creating and controlling cells. This either kills the cancer cells or stops new cancer cells from being made. More research is needed to know the best practice for treating pancreatic cancer with radiation. In this section, the methods of radiation therapy that are now used are explained.

For pancreatic cancer, radiation is often given with chemotherapy. Chemotherapy may improve how well radiation works. This combined treatment is called chemoradiation. Radiation may be given before, during, or after surgery or without any surgery.

External radiationFor pancreatic cancer, radiation is often given using a machine outside the body. This method is called EBRT (external beam radiation therapy). Before treatment, images of the tumor are taken with a CT scan using contrast. This process is called simulation. Your doctors use the images to decide the radiation dose and to shape the radiation beams. Beams are shaped with computer software and hardware added to the radiation machine.

During treatment, you will lie on a table in the same position as done during simulation. Devices may be used to keep you from moving so that the radiation targets the tumor. Likewise, methods may be applied to control breathing. Radiation beams are aimed at the tumor with help from ink marks on the skin or tiny, gold seeds placed in the tumor.

You will be alone while the technician operates the machine from a nearby room. He or she will be able to see, hear, and speak with you at all times. As treatment is given, you may hear noises. A session can take between 30 to 60 minutes. The types of EBRT used for pancreatic cancer include:

• 3D-CRT (three-dimensional conformal radiation therapy) – Radiation is given in small doses for a few weeks with beams that match the shape of the tumor,



3.2 radiation therapy

• IMRT (intensity-modulated radiation therapy) – Radiation is given in small doses for a few weeks with beams of different strengths based on the thickness of the tumor, and

• SABR (stereotactic ablative radiotherapy) – Radiation is given in high doses within a few visits and precisely targets the tumor.

Internal radiationThe other radiation method is internal radiation therapy (also called brachytherapy). Internal radiation therapy involves placing a radioactive object in or near the tumor. For pancreatic cancer, internal radiation is given during surgery through a plastic tube that is removed before the surgical cuts are sewn closed.

Side effects are new or worse physical or emotional conditions caused by cancer treatment. Each treatment for pancreatic cancer can cause side effects, but how your body will respond can’t be fully known. You may have different side effects than someone else. Common side effects of treatments are listed below.

Surgery. You may experience weakness, tiredness, and pain after the surgery. Other common side effects are difficulty digesting food, diabetes, leakage of pancreatic fluids, and surgical scars.

Radiation therapy. Side effects of radiation therapy may not occur in the first few visits. Over time, you may have discomfort in your abdomen. Other common side effects are not feeling hungry, nausea, diarrhea, and fatigue.

Chemotherapy. Side effects of chemotherapy depend on the drug, amount taken, length of treatment, and the person. In general, side effects

are caused by the death of fast growing cells, which are found in the gut, mouth, and blood. As a result, common side effects include diarrhea, nausea, vomiting, mouth sores, tiredness or weakness, numbness or tingling of hands or feet, skin and nail changes, hair loss, swelling, and not feeling hungry.

Targeted therapy. Erlotinib is a targeted therapy for pancreatic cancer. Common side effects include skin rash, diarrhea, feeling tired, not feeling hungry, and nausea. The rash may appear on the face, neck, or trunk of the body within the first 2 weeks of treatment.

Controlling side effects is important for your quality of life. There are many ways to limit these problems. However, listing all the ways is beyond the scope of this booklet. In general, changes in behavior, diet, or medications may help. Don’t wait to tell your treatment team about side effects. If you don’t tell your treatment team, they may not know how you are feeling.

Treatment side effects


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Diabetes: A disease that causes high levels of blood sugar

Fatigue: Severe tiredness despite getting enough sleep that limits one’s ability to function

Targeted therapy: Drugs that stop the growth process specific to cancer cells

3.3 Chemotherapy

Chemotherapy is the use of drugs to treat cancer. Many people refer to this treatment as “chemo.” Chemotherapy stops the growth process of cells in an active growth phase. It doesn’t work on cells in a resting phase. Cancer cells grow fast, so chemotherapy works well to stop new cancer cells from being made.

When only one drug is used, it is called a single agent. However, chemotherapy drugs differ in the way they work, so often more than one drug is used. A combination regimen is the use of two or more chemotherapy drugs. The chemotherapy drugs used for pancreatic cancer are:

• Capecitabine sold as Xeloda®,

• Cisplatin sold as Platinol® and Platinol® AQ,

• Docetaxel sold as Taxotere®,

• 5-FU (5-fluorouracil),

• Gemcitabine sold as Gemzar®,

• Irinotecan hydrochloride sold as Camptosar®,

• Oxaliplatin sold as Eloxatin®, and

• Nab-Paclitaxel sold as Abraxane®

Chemotherapy for pancreatic cancer can be given as a pill taken by mouth or as a liquid that is slowly injected into a vein. Most of the chemotherapy drugs listed above are given as injections. These injections are often given as outpatient treatment at a hospital, clinic, or doctor’s office. The length of the outpatient visit depends on which chemotherapy you receive.

Chemotherapy is given in cycles of treatment days followed by days of rest. These cycles vary in length depending on which drugs are used. Often, the cycles are 14, 21, or 28 days long. These cycles give the body a chance to recover before the next treatment. Thus, chemotherapy treatment includes some days without treatment.


3.4 Targeted therapy

Targeted therapy is the use of drugs to treat cancer. It stops the growth process that is very specific to cancer cells. It is less likely to harm normal cells than chemotherapy, which stops any cells in a growth phase. Erlotinib hydrochloride (sold as Tarceva®) is a targeted

therapy used for pancreatic cancer. It treats cancer by blocking a growth signal that is sent from the edge of a cell to the cell’s control center (nucleus). Erlotinib is used with chemotherapy. It is a pill that when digested travels in the bloodstream to treat cancer throughout the body.

You may hear about other treatments from your family and friends. They may suggest using CAM (complementary and alternative medicine). CAM is a group of treatments that aren’t often given by doctors. There is much interest today in CAM for cancer. Many CAMs are being studied to see if they are truly helpful.

Complementary medicines are treatments given along with usual medical treatments. While CAMs aren’t known to kill cancer cells, they may improve your comfort and well-being. Two examples are acupuncture for pain management and yoga for relaxation.

Alternative medicine is used in place of usual medicine. Some alternative medicines are sold as cures even though they haven’t been proven to work. If there was good proof that CAMs or other treatments cured cancer, they would be included in this booklet.

It is important to tell your treatment team if you are using any CAMs. They can tell you which CAMs may be helpful and which CAMs may limit how well treatments work.

Complementary and alternative medicine


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

3.5 Tools

• Are there any clinical trials that are appropriate for me?

• What are the treatments for pancreatic cancer?

• What are the risks and benefits for each treatment of pancreatic cancer?

• Will my age, general health, and stage of pancreatic cancer limit my treatment choices?

• Do I have to get treated?

• Where will I be treated? Will I have to stay in the hospital or can I go home after each treatment?

• What can I do to prepare for treatment? Should I stop taking my medications? Should I store my blood in case I need a transfusion?

• How many pancreatic cancer surgeries have you done? How many of your patients have had complications?

• Is pancreatic cancer surgery a major part of your practice?

• How soon should I start treatment? How long does treatment take?

• How much will the treatment cost? How can I find out how much my insurance company will cover?

• How likely is it that I’ll be cancer-free after treatment?

• What symptoms should I look out for during treatment?

• When will I be able to return to my normal activities?

• What is the chance that my cancer will return and/or spread?

• What should I do after I finish treatment?

• Are there supportive services that I can get involved in? Support groups?

Questions about treatment to ask your doctor


3.5 Tools

WebpagesAmerican Cancer Societywww.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-treating-surgerywww.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-treating-chemotherapywww.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-treating-radiation-therapywww.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-treating-by-stagewww.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/index

National Cancer Institutewww.cancer.gov/cancertopics/wyntk/pancreas/page8

NCCNwww.nccn.com/type-of-cancer/pancreatic-cancer/1369.htmlwww.nccn.com/type-of-cancer/pancreatic-cancer/1367.htmlwww.nccn.com/type-of-cancer/pancreatic-cancer/1368.htmlwww.nccn.com/type-of-cancer/pancreatic-cancer/1371.html

Pancreatic Cancer Action Networkwww.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/treatment/index.php

Review of Part 3

• Surgery removes the tumor with some normal tissue around its edge.

• Surgery may also remove lymph nodes.

• Radiation kills cancer cells or stops new cancer cells from being made.

• Drugs can be used to kill cancer cells anywhere in the body.

• Chemotherapy drugs stop the growth process of cells in a growth phase.

• Targeted therapy drugs stop cancer cells from getting signals to grow.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Part 4: Clinical trials

Part 4 describes a type of research called clinical trials. Taking part in a clinical trial may be a good treatment option. Talking with your treatment team, family, and friends can help you decide if a clinical trial is right for you.

4.1 – What are clinical trials? This type of research is described.

4.2 – The purpose of clinical trials The different aims of clinical trials are listed.

4.3 – Phases of clinical trials The four phases of clinical trials are described.

4.4 – Joining a clinical trial The first steps to take part in a trial are reviewed.

4.5 – Tools Questions to ask your doctor about clinical trials are listed along with helpful webpages.

28

31

282930


4.1 What are clinical trials?

4.2 The purpose of clinical trials

A clinical trial is a type of research that studies a test or treatment. Because of clinical trials, the tests and treatments in this booklet are now widely used to help patients. There may be an open clinical trial that you can join.

Clinical trials are an important treatment option for people with pancreatic cancer. Until recently, not many clinical trials had been done to find tests and treatments for pancreatic cancer. Thus, doctors are still studying what tests and treatments work best. NCCN experts recommend that you talk with your treatment team about joining a clinical trial.

Joining a clinical trial has benefits. First, you’ll have access to the most current cancer care. Second, you will be treated by experts. Third, the results of your treatment—both good and bad—are carefully tracked. Fourth, you may help other patients with cancer.

Clinical trials have risks too. Like any test or treatment, there may be side effects. Also, new tests or treatments may not help. Another downside may be that paperwork or more trips to the hospital are needed.

Clinical trials study how safe and helpful new tests or treatments are. When found to be safe and helpful, they may become tomorrow’s standard of care. However, there is no way to know this before the trial is done.

Clinical trials can study many things, such as:

• New drugs not yet approved by the U.S. FDA (Food and Drug Administration),

• New uses of drugs already approved by the FDA,

• New ways to give drugs, such as in pill form,

• Use of alternative medicines, such as herbs and vitamins,

• New tests to find and track disease, and

• Drugs or procedures that relieve symptoms.

New clinical trials of pancreatic cancer aim to study:

• Better ways to identify who is at risk for pancreatic cancer,

• Early signs of pancreatic cancer so it can be cured,

• Better ways to image pancreatic cancers,


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Alternative medicine: Treatments used in place of standard treatments

FDA: A federal government agency that regulates drugs and food

Radiation therapy: The use of radiation to treat cancer

Side effect: An unplanned physical or emotional response to treatment

Systemic therapy: Medicine that affects cancer cells throughout the body

4.2 The purpose of clinical trials

Definitions:

4.3 Phases of clinical trials

• New systemic therapy drugs to treat pancreatic cancer,

• New methods of giving radiation therapy,

• Which treatments work best to shrink a tumor for surgery, and

• Which treatments work best to kill cancer cells after surgery.

Tests and treatments aren’t offered to the public as soon as they’re made. They need to go through a series of trials to make sure they’re safe and work. Clinical trials have four phases. They are labeled with Roman numerals I – IV. The phases are described next using the example of a new drug treatment:

Phase I Phase I trials aim to find the best dose of a new drug with the fewest side effects. The drug has already been tested in lab and animal studies, but it now needs to be tested in patients. Doctors start by giving very low doses of the drug to the first group of patients. Higher doses are given to the next groups until side effects become too severe or the desired effect is seen. The drug may help patients, but Phase I trials are to test a drug’s safety. If a drug is found to be safe enough, it can be tested in a phase II clinical trial.

Phase II Phase II trials assess if a drug works for a specific type of cancer. They are done in larger groups of patients compared to Phase I trials. Often, new combinations of drugs are tested. Patients are closely watched to see if the


4.3 Phases of clinical trials

If you would like to join a clinical trial, talk with your doctor. There may be clinical trials where you’re getting treatment. To join, you must meet the conditions of the study. Patients in a clinical trial are often alike in terms of their tumor and general health. This is to know that any progress is because of the treatment and not because of differences between patients. Even if you qualify for the study, it is still your choice to join.

To join, you’ll need to review a paper called an informed consent form. This form describes the study in detail, including the risks and benefits. Also, your doctor will explain why the clinical trial may be right for you. You will be able to fully read the entire form and have all your questions answered. Afterward, you may decide to sign the form and start in the study.

4.4 Joining a clinical trial

drug works. The treatment team also looks for unplanned responses to treatment. If a drug is found to work, it can be tested in a phase III clinical trial.

Phase III Phase III trials include large numbers of patients. Often, these trials are randomized. This means that patients are put into a treatment group by chance. There can be more than two treatment groups in phase III trials. The control group gets the standard treatment and the other groups get a new treatment. Neither you nor your doctor can choose your group. Every patient in phase III studies is watched closely. The study will be stopped early if the side effects of the new drug are too severe or if one

group has much better results. Phase III clinical trials are often needed before the FDA will approve the use of a new drug for the general public.

Phase IV Phase IV trials test new drugs approved by the FDA. The drug is tested in many patients with different types of cancer. This allows for better research on short-lived and long-lasting side effects and safety. For instance, some rare side effects may only be found in large groups of people. Doctors can also learn more about how well the drug works and if it’s helpful when used with other treatments.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

4.5 Tools

• Is there a clinical trial that I could take part in?

• What is the purpose of the study?

• What kinds of tests and treatments does the study involve?

• What does the treatment do?

• Has the treatment been used before? Has it been used for other types of cancers?

• Will I know which treatment I receive?

• What is likely to happen to me with, or without, this new treatment?

• What are my other choices? What are their benefits and risks?

• How might the study change my daily life?

• What side effects can I expect from the study? Can the side effects be controlled?

• Will I have to stay in the hospital? If so, how often and for how long?

• Will the study cost me anything? Will any of the treatment be free?

• If I’m harmed as a result of the research, what treatment might I get?

• What type of long-term follow-up care is part of the study?

Questions about clinical trials to ask your doctor


4.5 Tools

List of clinical trialsNational Cancer Institutewww.cancer.gov/clinicaltrials1-800-4-CANCER (1-800-422-6237)

Pancreatic Cancer Action Networkwww.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/clinical_trials/find_clinical_trials.php

Webpages National Cancer Institutewww.cancer.gov/clinicaltrials/learningabout/Taking-Part-in-Cancer-Treatment-Research-Studies

NCCNwww.nccn.com/type-of-cancer/pancreatic-cancer/1375.html www.nccn.com/clinical-trials.html

Pancreatic Cancer Action Networkwww.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/clinical_trials/index.php

Review of Part 4

• A clinical trial is a type of research that studies a test or treatment.

• Clinical trials are an important treatment option for patients with pancreatic cancer.

• Four research phases are done to fully study how safe and how well the tests or treatments work.

• There may be open clinical trials that you can take part in.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Part 5: A step-by-step treatment guide

Part 5 is a guide through treatment for people dealing with pancreatic cancer. It shows what tests and treatments are recommended under which conditions. This information is taken from the treatment guidelines written by NCCN experts for pancreatic cancer doctors.

Much effort has been made to make this guide easy to read. Charts are used to list treatment options and map the steps through the treatment process. This information is also described in the text. Some words that you may not know are defined on the page and in the Dictionary in Part 8.

This guide can help you talk with your doctors about treatment options. It is organized by how much the cancer has grown. Follow the Contents to find the recommended care for you.

5.1 – Pancreatic cancer testing Read about the initial tests used to confirm pancreatic cancer and plan treatment.

5.2 – Local pancreatic cancer Learn about treatment for cancer that hasn’t grown beyond the pancreas.

5.3 – Locally advanced pancreatic cancer38 Surgery an option? Yes, for some tumors

with minor growth to blood vessels.41 Other options? Yes, for any tumors that

have grown into nearby structures.

5.4 – Metastatic pancreatic cancer Learn about treatments for pancreatic cancer that has spread far from the pancreas.

34

44

35

38


5.1 Pancreatic cancer testing

5.1 Pancreatic cancer testing

Part 5.1 shows the recommended tests for pancreatic cancer. Your doctors will use these tests to decide if you have cancer and to plan treatment. Testing is started when signs of pancreatic cancer are found by your doctors.

The first test for pancreatic cancer is usually either a CT or MRI. The pictures made by these tests may show if you have a tumor. It is suggested that the CT or MRI be done with standard protocols that clearly show tumor growth in and near the pancreas. These methods are called a pancreatic protocol CT or pancreatic protocol MRI.

Even when a tumor isn’t found, your doctors may still think that you may have cancer. In this case, more testing is needed. Many patients have an EUS next. An EUS lets your doctors see your pancreas more clearly and remove tissue with FNA for diagnosis.

If a pancreatic tumor is found, results from liver function tests, chest CT, and other imaging tests may be used by your doctors to plan cancer treatment. For possible metastases, a biopsy of the site may be done to confirm that there’s cancer. A team of cancer experts should review test results and plan treatment. Experts in imaging tests, laboratory tests, surgery, cancer drugs, and radiation therapy are recommended.

Next steps:For cancer found only in the pancreas, see Part 5.2 for treatment options. If the cancer has spread only to nearby sites, see Part 5.3. Part 5.4 lists the treatment options for metastases.

Imaging tests Imaging results

Special CT or MRI of the pancreas

Tumor in pancreas but no metastases

Metastases

No signs of cancer but cancer is still suspected

• Review by team of experts,

• Liver function tests, • Chest CT, and• Consider EUS

• Biopsy

• Liver function tests,• Chest CT, and• EUS, ERCP,

EUS/ERCP, or MRI/MRCP

Next tests


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Bile duct: Small tube-shaped organs that drain digestive fluid from the liver

Cholangitis: An infection of bile ducts

Metastases: Cancer that has spread from the first tumor to another body part

Stent: A tiny tube used to unblock a duct

! See pages 15 – 17 for test information.

5.2 Local pancreatic cancer

5.2.1 Treatment with surgery

Primary treatment Adjuvant treatment

Surgery

Tests and symptom control

• Possible biliary stent + antibiotic drugs,

• CA 19-9, and• Consider laparoscopy

Tests

Clinical trial (preferred),

Chemotherapy + chemoradiation, or

Chemotherapy alone

• CT and• CA 19-9

Part 5.2.1 shows the recommended care for cancer that is in your pancreas only. Your doctors may want you to have tests to confirm surgery is the best treatment for you. Before surgery, your doctors may also treat symptoms of cancer that may cause serious health problems.

Cancer can cause high CA 19-9 levels in the blood. As a result, your doctors may order CA 19-9 blood tests before and after surgery to check surgery results. Lower CA 19-9 levels after surgery suggest that the cancer was mostly or fully removed.

However, CA 19-9 levels are also high when too much bilirubin is in the blood because of a blocked bile duct. Too much bilirubin causes jaundice. You may have jaundice because a tumor has blocked your bile duct. In this case, your CA 19-9 levels shouldn’t be tested before surgery. Your doctors won’t know if the high CA 19-9 level is caused by cancer or bilirubin.

Your doctors may unblock your bile duct with a stent if you have jaundice and symptoms of cholangitis or fever. If so, antibiotic drugs are also needed. You may also get a stent if you are very itchy from jaundice or won’t have surgery within a week. If bilirubin levels return to normal before surgery, a CA 19-9 test can be done.

Your doctors may want you to have a laparoscopy before surgery. This surgical test may find cancer that was not found by other tests. It is suggested for people at higher risk of having metastases.


ERCP = Endoscopic retrograde cholangiopancreatography


FNA = Fine-needle aspiration

MRCP = Magnetic resonance cholangiopancreatography

MRI = Magnetic resonance imaging



The primary treatment for local cancer that does not involve nearby blood vessels is surgery. The type of surgery used will depend on the size and location of the tumor. Research supports having surgery at a hospital that does more than 15 pancreatic surgeries each year. Hospitals that perform many pancreatic surgeries often have better results. At the start of the surgery, your doctor may decide that surgery isn’t possible.

Adjuvant treatment is given after surgery to try to kill any remaining cancer cells. It should only be started after you’ve recovered from surgery. Starting this treatment 4 to 8 weeks after surgery is ideal. Beforehand, testing with CT and CA 19-9 is suggested to check for metastases. Another CT is suggested after chemotherapy if it will be followed by chemoradiation.

For adjuvant treatment, taking part in a clinical trial is strongly suggested. If you aren’t able to join a clinical trial, chemotherapy before or after chemoradiation is a second option. Gemcitabine or 5-FU with leucovorin calcium is suggested for chemotherapy. Leucovorin calcium improves how well 5-FU works. For chemoradiation, either gemcitabine- or fluoropyrimidine-based regimens can be used.

A third option for adjuvant treatment is chemotherapy alone. Gemcitabine or 5-FU with leucovorin calcium can be used. Gemcitabine is preferred since its side effects aren’t as severe as 5-FU/leucovorin. If gemcitabine or 5-FU/leucovorin can’t be used, you may be given capecitabine.

Next steps:The follow-up tests given after surgery can be found in Part 5.2.2. If you didn’t have surgery, other treatment options for locally advanced cancer can be found in Part 5.3.3, and for metastases in Part 5.4.

5.2.2 Follow-up tests after surgery

Tests

Every 3 – 6 months for 2 years, then once a year:• Medical history + physical exam,• Possible CA 19-9 test, and• Possible CT

Part 5.2.2 shows the recommended care after surgery. After surgery there is a chance that the cancer may return despite the use of adjuvant therapy. Follow-up tests are used to find any recurrences so that treatment to control cancer growth may be started. Follow-up tests are given every 3 to 6 months for 2 years, then every year. A medical history and physical exam can help to find signs of cancer early. A CA 19-9 blood test and CT may also help to find cancer early, but research is needed to confirm this.

Next steps:Treatment options for cancer that returns after surgery are listed in Part 5.2.3.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Biopsy: Removal of small amounts of tissue or fluid to be tested for disease

CA 19-9: Proteins made by cancer cells and found in blood

Chemoradiation: Treatment with chemotherapy and radiation therapy

Clinical trial: Research on a test or treatment to assess its safety or how well it works

Metastases: Cancer that has spread from the first tumor to another body part

Supportive care: Treatment for symptoms of a disease


5.2.3 Treatment if cancer returns after surgery

Test Test Results

Possible biopsy

Cancer in or near the pancreas

Cancer has metastasized

Treatment

>6 months since last treatment

<6 months since last treatment

Clinical trial (preferred), Different chemotherapy than before, or

Best supportive careClinical trial (preferred),Same chemotherapy as before,

Best supportive care

Different chemotherapy than before, or

Clinical trial (preferred),First-time chemoradiation,


Different chemotherapy than before, or

Part 5.2.3 shows the recommended care for pancreatic cancer that returns after surgery. A biopsy may be helpful to confirm that cancer is present before any treatment is started. If cancer is present, a clinical trial is always the preferred treatment option.

There are options other than a clinical trial. For cancer in or near the pancreas, your doctor may suggest chemoradiation if not received before, different chemotherapy than before, or supportive care. Other options for metastases are based on the time since the last treatment. If treatment ended less than 6 months ago, options include different chemotherapy than before or supportive care. When treatment ended more than 6 months ago, the same or different chemotherapy than before can be used. Supportive care is also an option.


5-FU = 5-fluorouracil


5.3 Locally advanced pancreatic cancer

Part 5.3.1 shows the recommended care for locally advanced cancer that may be treated with surgery. Doctors describe this tumor as ‘borderline resectable.’ Your doctors may want you to have tests to confirm surgery is the best treatment for you. Your doctors may also treat symptoms of cancer that may cause serious health problems.

Cancer can cause high CA 19-9 levels in the blood. As a result, your doctors may order CA 19-9 blood tests before and after surgery to check surgery results. Lower CA 19-9 levels after surgery suggest that the cancer was mostly or fully removed.

However, CA 19-9 levels are also high when too much bilirubin is in the blood because of a blocked bile duct. Too much bilirubin causes jaundice. You may have jaundice because the pancreatic tumor has blocked your bile duct. In this case, a stent to unblock your bile duct is needed along with antibiotic drugs. If bilirubin levels return to normal before surgery, a CA 19-9 test can be done.

Before surgery, a biopsy is needed to confirm that there’s cancer. EUS-FNA is the preferred method. A repeat biopsy should be done when cancer isn’t found. Your doctor may also want you to have a laparoscopy. This surgical test may find metastases that were not found by other tests.

5.3.1 Treatment before surgery

Neoadjuvant treatment

Tests

• Imaging of the pancreas, abdomen, and pelvis, and

• Possible laparoscopy

Chemotherapy alone, or

Primary treatment

Surgery

If cancer growth, stent or bypass if jaundice

If surgery can’t be done, stent or bypass if jaundice

Chemotherapy + radiation


• Possible biliary stent + antibiotic drugs,

• CA 19-9,• Biopsy (EUS-FNA

preferred), and• Consider

laparoscopy


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:


Biopsy: Removal of tissue or fluid to test for disease

Bypass: Surgery to re-route the flow of bile from the common bile duct into the small intestine

Duodenum: The first part of the small intestine, which absorbs nutrients from food

Margins: The normal tissue around the tumor removed during surgery



If the biopsy confirms there’s cancer, you may be given neoadjuvant treatment to shrink the tumor before surgery. This may consist of chemotherapy alone or chemotherapy with radiation therapy. After neoadjuvant treatment, imaging tests of the pancreas, abdomen, and pelvis should be done to check treatment results. Your doctor may also suggest a laparoscopy to check for metastases.

If the tumor grew during neoadjuvant treatment, surgery isn’t an option. Since in this case the tumor won’t be removed, a stent or bypass of the bile duct is recommended if the tumor is causing jaundice. Likewise, your doctors may also want to do a bypass of the duodenum if it’s blocked by the tumor.

If the tumor shrunk, surgery 6 to 8 weeks after neoadjuvant treatment is ideal if surgery is possible. If your surgeon thinks that immediate surgery isn’t appropriate, you may receive more chemotherapy. Surgery should only be tried if it’s likely that the margins will be cancer-free. The type of surgery used will depend on the size and location of the tumor. Research supports having surgery at a hospital that does more than 15 pancreatic surgeries each year. Hospitals that perform many pancreatic surgeries have better results.

At the start of the surgery, your doctor may decide that surgery isn’t possible. Since the tumor won’t be removed, a stent or bypass of the bile duct is recommended if the tumor is causing jaundice. Likewise, your doctors may also want to do a bypass of the duodenum if it’s blocked by the tumor.

Next steps: Treatment recommendations for after surgery are discussed in Part 5.3.2. If surgery wasn’t done, other treatment options for locally advanced cancer can be found in Part 5.3.3, and for metastases, in Part 5.4.

Acronyms


FNA = Fine-needle aspiration




Part 5.3.2 shows the recommended care after surgery for locally advanced cancer. After surgery, a CT scan is suggested to check for metastases. If you had a CA 19-9 blood test before surgery, you may receive a second CA 19-9 test after surgery to check the treatment results.

Some patients with locally advanced cancer receive adjuvant treatment after surgery to treat any remaining cancer cells. However, doctors don’t often give both neoadjuvant and adjuvant treatment for pancreatic cancer. If you receive adjuvant treatment, it should only be started after you’ve recovered from surgery. Starting 4 to 8 weeks after surgery is ideal.

For adjuvant treatment, taking part in a clinical trial is strongly suggested. If you aren’t able to join a clinical trial, chemotherapy before or after chemoradiation is a second option. Gemcitabine or 5-FU with leucovorin calcium is suggested for chemotherapy. Leucovorin calcium improves how well 5-FU works. For chemoradiation, either gemcitabine- or fluoropyrimidine-based regimens can be used.

A third option for adjuvant treatment is chemotherapy alone. Gemcitabine or 5-FU with leucovorin calcium can be used. Gemcitabine is preferred since its side effects aren’t as severe as 5-FU/leucovorin. If gemcitabine or 5-FU/leucovorin can’t be used, you may be given capecitabine.

Next steps:The follow-up tests given after surgery can be found in Part 5.2.2. If surgery wasn’t done, other treatment options for locally advanced cancer can be found in Part 5.3.3, and for metastases, in Part 5.4.

5.3.2 Treatment after surgery

Adjuvant treatmentTests

Clinical trial (preferred)

Chemotherapy + chemoradiation, or

Chemotherapy alone

• CT and• CA 19-9

Primary treatment

Surgery


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:


Biopsy: Removal of tissue or fluid to test for disease

Bypass: Surgery to re-route the flow of bile into the small intestine


Jaundice: A yellowing of the skin and eyes

Laparoscopy: A test that inserts a thin, lighted tube in a small cut to see inside the belly area




If cancer isn’t found, repeat biopsy + consider laparoscopy


• Possible biopsy, and • Stent if jaundice

Performance status

Good

FOLFIRINOX,


Poor

First-line treatment

Gemcitabine ± other chemotherapy,

Possible capecitabine

Best supportive careGemcitabine, or

Status rated by doctor

5.3.3 First-line drug treatment

Gemcitabine + erlotinib, or

Chemoradiation

Part 5.3.3 shows the recommended drug treatment for locally advanced cancer that can’t be treated with surgery. Doctors describe this cancer as ‘unresectable.’ If not done before, a biopsy is needed to confirm that there’s cancer before treatment is started. If no cancer is found, at least two more biopsies should be done before testing for other diseases. Your doctor may also want you to have a laparoscopy if you haven’t had this test before. It may find metastases that were not found with other tests.

You may have jaundice because a tumor has blocked your bile duct. In this case, a stent to unblock your bile duct is needed. A stent isn’t needed if you had a biliary bypass when surgery to remove the tumor was tried.

After testing and jaundice treatment, your doctor will rate your performance status to decide your treatment options. Your status is based on your ability to do activities and your symptoms. If you have a good performance status, joining a clinical trial is preferred for first-line treatment. Your other options are chemotherapy drugs that have been tested




in clinical trials. These drugs include FOLFIRINOX, gemcitabine alone, gemcitabine with erlotinib, a gemcitabine-based chemotherapy regimen, or capecitabine. FOLFIRINOX is a combination of 5-FU, leucovorin, irinotecan, and oxaliplatin. Following any of these chemotherapy options, radiation therapy with chemotherapy may be given if there is no cancer growth for months and there is no proof of distant metastases.

Two options may be considered if you have a poor performance status. First, gemcitabine can be given. Otherwise, supportive care is recommended.

Next steps: If first-line treatment doesn’t stop cancer growth, the next treatment options are listed in Part 5.3.4. If the cancer spreads to distant sites, treatment can be found in Part 5.4.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Chemoradiation: Treatment with chemotherapy and radiation therapy


Distant metastases: Cancer that has spread from the first tumor to a far site

Performance status: A rating of one’s ability to do daily activities



Definitions:

Part 5.3.4 shows the recommended treatment after first-line treatment for locally advanced cancer. Your doctor will rate your performance status again to decide your treatment options. If your performance status is poor, supportive care is suggested.

If your performance status is good, you have four options. The preferred option is to join a clinical trial. The second option is fluoropyrimidine-based chemotherapy if you had a gemcitabine-based regimen before. Fluoropyrimidine drugs include 5-FU and capecitabine. Likewise, the third option is gemcitabine-based chemotherapy if you had a fluoropyrimidine-based regimen before. Lastly, chemoradiation may be given if not used before and the cancer has only grown in the pancreas.

Next steps: If the cancer spreads to distant sites, treatment can be found in Part 5.4. Aspects of supportive care are addressed in Part 6.

5.3.4 Options after first-line drug treatment

Performance status


Fluoropyrimidine-based chemotherapy,


Gemcitabine-based chemotherapy, orChemoradiation

Treatment options

Good

Poor



5.4 Metastatic pancreatic cancer

Part 5.4.1 shows the recommended drug treatment for metastatic disease. You may have jaundice because a tumor has blocked your bile duct. In this case, a stent to unblock your bile duct is needed. A stent isn’t needed if you had a biliary bypass when surgery to remove the tumor was tried.

After jaundice treatment, your doctor will rate your performance status to decide your treatment options. Your status is based on your ability to do activities and your symptoms. If you have a good performance status, joining a clinical trial is preferred for first-line treatment. Your other options are chemotherapy drugs that have been tested in clinical trials. These drugs include

FOLFIRINOX, gemcitabine with erlotinib, gemcitabine alone, a gemcitabine-based chemotherapy regimen, or capecitabine. FOLFIRINOX is a combination of 5-FU, leucovorin, irinotecan, and oxaliplatin.

Two options are given if you have a poor performance status. First, gemcitabine can be given. Otherwise, supportive care is recommended.

Next steps: If first-line treatment doesn’t stop cancer growth, the next treatment options are listed in Part 5.4.2. Aspects of supportive care are addressed in Part 6.

5.4.1 First-line drug treatment

Performance status

GoodFOLFIRINOX,


Poor

First-line treatment

Gemcitabine ± other chemotherapy, or

Possible capecitabine


Gemcitabine, or

Stent if jaundice

Symptom control


Gemcitabine ± erlotinib,


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:Bile duct: Small tube-shaped organs that drain digestive fluid from the liver



Jaundice: Yellowing of the skin and eyes

Metastatic disease: Cancer that has spread from the first tumor to another body part


5.4 Metastatic pancreatic cancer

Part 5.4.2 shows the recommended treatment after first-line treatment for metastatic disease. Your doctor will rate your performance status again to decide your treatment options. If your performance status is poor, supportive care is suggested. Aspects of supportive care are addressed in Part 6.

If your performance status is good, you have three options. The preferred option is joining a clinical trial. The second option is fluoropyrimidine-based chemotherapy if you had a gemcitabine-based regimen before. Fluoropyrimidine drugs include 5-FU and capecitabine. Likewise, the third option is gemcitabine-based chemotherapy if you had a fluoropyrimidine-based regimen before.

Performance status

GoodClinical trial (preferred),

Poor

Treatment options


Fluoropyrimidine-based chemotherapy, or

Gemcitabine-based chemotherapy,

5.4.2 Options after first-line drug treatment



Part 6: Beyond cancer treatment

A treatment plan often addresses challenges other than cancer treatment. Part 6 lists some of these challenges you may face. For most patients with cancer, their main concern is that their treatment works. However, having cancer is complex and brings many physical and emotional challenges. It is important to know about these challenges and get the supportive care you need.

6.1 – Physical challenges Addresses health problems, including pain, caused by pancreatic cancer.

6.2 – Emotional challenges Addresses changes after cancer in your lifestyle, mood, sleep, and view of self.

6.3 – Relationship challenges Addresses getting the help you need as well as the help caregivers need.

6.4 – Tools Suggestions for helping you and your caregivers cope.

47

48

49

50


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Bile: Yellowish-brown fluid made by the liver to help digest food

Bile duct: Small tube-shaped organs that drain bile from the liver


Diabetes: A disease that causes high levels of blood sugar

Jaundice: Yellowing of the skin and eyes

PEG: A tube inserted through the side of the body into the stomach to give food


6.1 Physical challenges

As a pancreatic tumor grows, it can cause serious health problems. It is important to talk to your treatment team about any health issues you have. Some of the physical challenges that you may have are:

Blocked bile ductThe tumor may grow large enough to block your bile duct. A blocked duct causes bile to buildup in the liver. As a result, you may have pain, itching, discomfort, and jaundice. Common treatments for a blocked bile duct are a stent or bypass. Before the stent can be placed, bile may need to be drained through an opening in the side of the body. Unblocking a bile duct before cancer treatment is addressed in Part 5. However, you may need a new or second stent during or after cancer treatment if the tumor grows larger.

Blocked stomachThe tumor may also grow large enough to block your stomach. This blockage can cause pain, vomiting, and other problems. Treatments for a blocked stomach include a stent, PEG (percutaneous endoscopic gastrostomy) tube, or surgical bypass.

Trouble eatingHealthy eating is always important. It includes eating a balanced diet, eating the right amount, and drinking enough fluids. Pancreatic cancer or its treatment may make healthy eating a challenge if either causes you to feel not hungry, have abdominal cramps, or have trouble digesting food. A nutritionist—an expert of food—can help. You may also need drugs for diabetes or may need digestive enzymes because your pancreas has been removed or isn’t working because of the tumor.


6.1 Physical challenges

6.2 emotional challenges

PainYou may have pain caused by the cancer. Pain can occur when the tumor grows into nearby nerves or presses against other organs. Pain is often treated with drugs that are in pill form. Another treatment is to inject alcohol

(ethanol) into your nerves, called the celiac plexus, to destroy them. Destroying the nerves reduces pain. A third option is to shrink the tumor using chemotherapy, radiation therapy, or both if you didn’t have these treatments before.

Becoming a “cancer patient”Hearing “you have cancer” is likely to be life changing. Some challenges may include managing doctor visits, figuring out how to care for your kids, missing work, and feeling a loss of control. Some people try to keep their life as normal as they can. Others change their life a lot. However, many cancer survivors will tell you that during the active treatment period, being a patient is your job. It’s a job that requires much time and energy. This can be hard. Accept the support offered to you and reach out if you need more. Many people are willing to help if asked.

Getting enough sleepYou may have already lost some nights of sleep. This is common. The stress of learning that you have cancer and deciding a treatment plan takes its toll. You may lose more sleep while waiting to have treatment and during recovery. You may lose sleep because of pain. Getting less sleep can affect your mood, conversations, and ability to do things. If possible, allow yourself to rest, let people help you, and

talk to your doctor about sleep medication. Behavioral sleep medicine—a type of ‘talk’ therapy—may also help.

Anxiety and depressionFeelings of anxiety and depression are common among patients with cancer. You may feel anxious before testing and while waiting for the results. Likewise, you may have a passing depression during a hard part of treatment. Feeling distressed may be a minor problem or it may be more serious. Serious or not, tell your treatment team so you can get help if needed. Help can include support groups, “talk” therapy, or medication. Some people also feel better from mild exercise, talking with loved ones, and relaxing. Your treatment team has information to help you.

View of selfSome people blame themselves for getting cancer. However, what causes pancreatic cancer is unknown. Instead of blaming yourself, try to focus on getting better. Undergoing cancer treatment can be hard. You’ll have a lot to deal with without the blame.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

6.3 relationship challenges

Accepting helpIt can be very helpful to stay in touch with others and let them support you. Try to maintain warm relationships with family and friends. Make a list for them of things that would help you. Most people would be happy to hear what you need. If you are a person of faith, your personal beliefs and faith community can help. There are also professionals in mental health, social work, and pastoral services who are able to assist you. You can also start attending support groups to receive help from other cancer survivors.

Receiving affectionYou may become upset if your spouse or partner stops showing affection. He or she may change how they show their love because they are unsure of what to do. They may also think of themselves more as a caregiver than a partner during treatment. Sharing what you need and want physically and emotionally can help your partner and yourself.

Caring for caregiversNo one experiences cancer alone. Having cancer can affect your loved ones, especially those who provide care. Their care can take many forms. It can range from giving emotional support to giving medical services in the home. Caregivers often take on extra duties to keep life normal for the family. They also play a central role in explaining what is happening to you to others, like friends and doctors.

It is natural for caregivers to focus on you. Don’t feel guilty. However, caregivers need to meet their own needs as well. Cancer treatment can last from months to years. Caregivers often get too tired from the physical and mental challenges related to the cancer. It isn’t easy, but caregivers need to take care of themselves. If they don’t, they won’t be able to take good care of anyone. In Part 6.4, some ideas on coping for caregivers are listed.

Notes:

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________


6.4 Tools

• Let other people help you. This is the time to accept offers for rides, meals, childcare, or just good company.

• Be as healthy as you can—eat well, get enough rest, exercise, and stop smoking.

• Talk with your family and friends about your concerns and needs. Let them know what is important to you, including your feelings about end-of-life decisions.

• Do the things that help you cope—keep a journal, garden, play music, or take that trip you’ve wanted to take.

• Don’t be afraid to take medications that can help your emotional and physical symptoms. Let your cancer care team help you.

• Talk with your treatment team about what you are experiencing. Don’t wait until you are feeling overwhelmed.

• Know the resources that are available to you and use them.

• Be your own advocate—ask questions, take notes, and be active in your treatment.

Coping for patients


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

6.4 Tools

• Take the time to understand your loved one’s cancer and its treatment. Educating yourself will help you know what to expect and how to be supportive.

• Help provide eyes and ears and sometimes a voice for your loved one. For instance, you can help at doctor visits. You can help by asking questions, hearing what is said, taking notes, and sometimes speaking up for your loved one.

• Talk with your loved one about important issues. Do it from the very beginning. Don’t wait because your loved one may become too sick to talk.

• Help develop a treatment plan. A treatment plan helps everyone to understand what treatment goals and other life decisions are important.

• Take care of yourself. Find the time to get away—take a walk, have lunch with a friend, or see a movie. Do something that feels normal. As well, eat healthy foods, try to sleep well, and exercise. You’ll be a better caregiver if you are taking care of yourself.

• Let other people help you. Take advantage of offers to make a meal, provide a ride, watch the kids, or just give you a break. Let your friends know how they can help.

• Take advantage of resources. There are many approaches to dealing with the complex issues you may face as a caregiver. Find out what support there is and use these resources.

• Understand that caregivers are survivors just as much as patients are. Cancer is life-changing whether you are the patient or the person caring for the patient.

Coping for caregivers


6.4 Tools

Webpages American Cancer Societywww.cancer.org/Treatment/index

National Cancer Institutewww.cancer.gov/cancertopics/coping

NCCNwww.nccn.com/living-with-cancer.html

Pancreatic Cancer Action Networkwww.pancan.org/section_facing_pancreatic_cancer/find_support_resources

Review of Part 6

• You’ll face challenges other than cancer treatment.

• Ask for and accept help during this stressful time.

• Give caregivers support to take care of themselves as well as you.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Part 7: Treatment planning

Cancer is very stressful. While absorbing the fact that you have cancer, you have to learn about tests and treatments. As well, the time to accept a treatment plan feels short. Parts 1 through 6 aimed to teach you about pancreatic cancer, its treatment, and other challenges. Part 7 addresses issues related to your pancreatic cancer treatment plan.

7.1 – Benefits of a treatment plan How a treatment plan can help is explained.

7.2 – Parts of a treatment plan The information in a treatment plan is presented.

7.3 – Your role in planning How you can take part in treatment planning is described.

7.4 – Getting a 2nd opinion Getting another treatment plan from more doctors is addressed.

7.5 – Tools Webpages about treatment planning are listed.

54

5854

59

60


7.1 Benefits of a treatment plan

7.2 Parts of a treatment plan

Learning you have cancer starts an unplanned journey to an unknown place. A treatment plan is like having a roadmap for your journey. It is a written course of action through treatment and beyond. It can help you, your loved ones, and your treatment team. A treatment plan is useful for:

• Starting and guiding talks about treatment,

• Teaching what the treatment choices are,

• Informing everyone of the decisions made,

• Reminding everyone of the decisions made,

• Pinpointing who is in charge of each part of care,

• Controlling stress,

• Knowing what to expect,

• Changing from one doctor to another,

• Improving contact among your doctors, and

• Providing care for all issues.

A treatment plan addresses all cancer care needs while respecting your beliefs, wishes, and values. It is likely to change and expand as you go through treatment. The plan will include the role of your doctors and how you can help yourself. A treatment plan often has the following parts:

Cancer information Cancer can greatly differ even when people have a tumor in the same organ. Test results that describe the cancer are reported in the treatment plan. Such test results include the cancer site, cell type, and cancer stage. See Part 2 for the tests used for pancreatic cancer.

Your treatment teamCancer care is a team effort. Who is on your team depends on the treatments you choose. Gastroenterologists often help in diagnosing pancreatic cancer and placing stents to drain the biliary tree. Surgeons and radiation oncologists give local treatments. Medical oncologists give systemic treatments. Your primary care doctor can also be part of your team. He or she can help you express your feelings about treatment to the team. Treatment of other medical problems may be improved if he or she is informed of your cancer care. Besides doctors, you may receive care from nurses, social workers, and other health experts. Ask to have the names and contact information of your health providers included in the treatment plan.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Definitions:

Biliary tree: The system of tube-shaped organs that drain digestive fluid from the liver


Gastroenterologist: A doctor who’s an expert in diseases of the digestive system

Local treatment: Medicine that affects cancer cells in one specific area of the body only

Systemic treatment: Medicine that affects cancer cells throughout the body


Cancer treatmentThere is no single treatment practice that is best for all patients. There is often more than one treatment option including clinical trials. Treatment planning takes into account many factors, such as:

• The growth of the tumor,

• Location of the tumor,

• Your general health,

• Treatment side effects,

• Costs of treatment,

• Changes to your life,

• What you want from treatment, and

• Your feelings about side effects.

A guide to treatment options can be found in Part 5. The cancer treatment that you agree to have should be reported in the treatment plan. It is also important to note the goal of treatment and the chance of a good treatment response. As well, all known side effects should be listed and the time required for cancer treatment noted. See Part 3 for a list of the common side effects of treatment.

Your treatment plan may change because of new information. You may change your mind about treatment. Tests may find new results. How well the treatment is working may change. Any of these changes may require a new plan.

Stress and symptom controlCancer or its treatment can cause bothersome symptoms. You may also have symptoms from the stress of having cancer. Such symptoms include pain, sleep loss, and anxiety. See Part 6 for more information. Helping you to be comfortable and stay active are key goals of the treatment plan. There are



ways to treat many symptoms, so tell your treatment team about any symptoms you have.

Having cancer may cause you to feel helpless, fearful, alone, or overwhelmed. There are ways to manage this stress. At your cancer center, cancer navigators, social workers, and other experts can help. There may also be helpful community resources, such as support groups and wellness centers.

Financial stress is common. You may be unemployed or miss work during treatment. You may have too little or no health insurance. Talk to your treatment team about work, insurance, or money problems. They will include information in the treatment plan to help you control your finances.

Survivorship careCancer survivorship begins on the day you learn of having pancreatic cancer. For many survivors, the end of active treatment signals a time of celebration but also of great anxiety. This is a very normal response. You may need support to address issues that arise from not having regular visits with your treatment team. As well, your treatment plan should include a schedule of follow-up cancer tests, treatment of long-term side effects, and care of your general health.

Advanced careTalking with your doctor about your prognosis can help with treatment planning. If the cancer can’t be cured, a

care plan for the end of life can be made. However, such talks often happen too late or not at all. Your doctor may delay these talks for fear that you may lose hope, become depressed, or have a shorter survival. Studies suggest that these fears are wrong. Instead, there are many benefits to advanced care planning. It is useful for:

• Knowing what to expect,

• Making the most of your time,

• Lowering the stress of caregivers,

• Having your wishes followed,

• Having a better quality of life, and

• Getting good care.

Advanced care planning starts with an honest talk between you and your doctors. You don’t have to know the exact details of the likely outcome of the cancer. Just having a general idea will help with planning. With this information, you can decide at what point you’d want to stop chemotherapy, if at all. You can also decide what treatments you’d want for symptom relief, such as surgery or drugs.

Another part of the planning involves hospice care. Hospice care doesn’t include treatment to fight the cancer but rather treatment to reduce symptoms caused by cancer. Hospice care may be started because you aren’t interested in more cancer treatment, no other cancer treatment is available, or because you may be too sick for cancer treatment.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1


Hospice care allows you to have the best quality of life as possible. Care is given all day, every day of the week. You can choose to have hospice care at home or at a hospice center. One study found that patients and caregivers had a better quality of life when hospice care was started early.

An advance directive describes the treatment you’d want if you weren’t able to make your wishes known. It also can name a person who you’d want to make decisions for you. It is a legal paper that your doctors have to follow. It can reveal your wishes about life-sustaining machines, such as feeding tubes. It can also include your treatment wishes if your heart or lungs were to stop working. If you already have an advance directive, it may need to be updated to be legally valid.

Notes:

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________


7.3 Your role in planning

The role patients want in treatment planning differs. Some want to be involved as little as possible. Others want to know everything and share decision making with their doctors. These two roles are described as passive and active. Tell your treatment team which role you want or if you want a role somewhere in the middle.

Passive roleIn a passive role, a person often doesn’t seek out information, speak up for themselves, or think through treatment options. This may be due to a high level of stress. It may be hard to hear or know what others are saying. Stress, pain, and drugs can limit your ability to make good decisions. You may also want a passive role because you don’t know much about cancer. Before now, you’ve never heard before the words used to describe pancreatic cancer, tests, or treatments. Likewise, you may think that you wouldn’t know any better than your doctors.

Letting others decide your treatment may make you feel more at ease. But, who do you want to make the final decision? You may rely on your doctors alone to make the right decisions. You can also have loved ones help. They can gather information, speak on your behalf, and share decision-making with your doctors. Even if others decide your treatment, you still have to agree to treatment by signing a consent form.

Active roleIn an active role, a person often searches for all information, prepares for all outcomes, and speaks up for themselves. They may take the lead or share in decision-making. Taking this role may make you feel more certain and hopeful. You’ll likely get the treatment you want, at the place you want, and by the doctors you want.

There are four key steps to making a shared treatment decision. First, know what you want from treatment. Do you want a cure or symptom relief? What hardships are you willing to accept to meet your goal? Second, know your test results. This information can pinpoint what’s important for you on websites and in books and brochures. It can also clarify which treatments are needed. Third, strive to have helpful talks with your doctor. Prepare questions before your visit and ask questions if your doctor isn’t clear. You can also record your talks and get copies of your medical records. Fourth, accept help from others. An active role doesn’t mean going through it alone. Others can help you be active by finding information, taking notes, asking questions, and helping you talk through the options.


Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

7.4 Getting a 2nd opinion

The time around a cancer diagnosis is very stressful. People with cancer often want to get treated as soon as possible. They want to make the cancer go away before it spreads farther. While cancer can’t be ignored, there is time to think about and choose which treatment plan is best for you.

You may wish to have another doctor review your test results and the treatment plan your doctor has recommended. This is called getting a 2nd opinion. Pancreatic cancer is a serious disease, and new information may have been published about which treatments are most effective and safe. You may completely trust your doctor, but a 2nd opinion on which treatment is right for you can help.

Copies of the pathology report, a CD of the imaging tests, and other test results need to be sent to the doctor giving the 2nd opinion. Some people feel uneasy asking for copies from their doctors. However, a 2nd opinion is a normal part of cancer care. When doctors have cancer, most will talk with more than one doctor before choosing their treatment. What’s more, some health plans require a 2nd opinion. If your health plan doesn’t cover the cost of a 2nd opinion, you have the choice of paying for it yourself.

Choosing your cancer treatment is a very important decision. It can affect your length and quality of life. There are few cancers that are so aggressive that you can’t take a few weeks to get a 2nd opinion and select the best treatment for you.

Notes:

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________

_____________________


7.5 Tools

Webpages American Cancer Societywww.cancer.org/Treatment/FindingandPayingforTreatment/index

National Cancer Institutewww.cancer.gov/cancertopics/factsheet/Therapy/doctor-facility

National Coalition of Cancer Survivorshipwww.canceradvocacy.org/toolbox/

Pancreatic Cancer Action Networkwww.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/hospice/Survivor_planning.php

Review of Part 7

• A treatment plan can help you through treatment and beyond.

• It covers many issues—test results, treatments, and supportive programs.

• You can choose how active a role to have in planning your treatment.

• You may wish to get a 2nd opinion on your treatment plan.


Part 8: Dictionary

Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Abdomen The belly area between the chest and pelvis.

Adjuvant treatment A treatment given after the main treatment used to cure disease.

Allergic reaction Symptoms caused when the body is trying to rid itself of outside agents.

Alternative medicine Treatments used in place of standard treatments.

Bile Yellowish-brown fluid made by the liver to help digest food.

Bile duct Small tube-shaped organs that drain digestive fluid from the liver.

Biliary tree The system of tube-shaped organs that drain digestive fluid from the liver.

Bilirubin A yellow pigment removed from blood by the liver.

Biopsy Removal of small amounts of tissue or fluid to be tested for disease.

Blood chemistry test Measurement of the amount of chemicals in the blood.

Brachytherapy Radiation received from a radioactive object placed near or in the tumor.

Bypass Surgery to re-route the flow of bile from the common bile duct into the small intestine.

CA 19-9 Proteins made by cancer cells and found in blood.

Cancer staging Ratings of the growth and spread of tumors.

Celiac plexus A group of nerves that are toward the back of the upper part of the abdomen.

Cells The “building blocks” of tissues in the body.

Chemoradiation Treatment with chemotherapy and radiation therapy.

Chemotherapy Drugs that stop the growth process of cells in an active growth phase.

Chemotherapy cycle Days of treatment followed by days of rest.

Cholangitis An infection of the small tube-shaped organs that drain digestive fluid from the liver.

Clinical trial Research on a test or treatment to assess its safety or how well it works.

Combination regimen The use of two or more drugs.

Common bile duct A tube-shaped organ that transports digestive fluid from the liver into the gut.

Complementary medicine Treatment given along with standard treatment.

Complete blood count A test of the number of blood cells.

Computed tomography (CT) A test that uses x-rays to view body parts.


Part 8: Dictionary

Contrast A dye put into your body to make clearer pictures during imaging tests.

Control group Patients in research who receive the standard-of-care treatment.

Diabetes A disease that causes high levels of blood sugar.

Diagnosis To identify a disease.

Distal pancreatectomy Surgery that removes the body and tail of the pancreas and other nearby organs.

Distant metastasis The spread of cancer cells from the first tumor to a far site.

Ductal adenocarcinoma Cancer of the cells that line the pancreatic ducts and make proteins that digest food.

Duodenum The first part of the small intestine, which absorbs nutrients from eaten food.

Endocrine cells Cells that make chemicals that activate cells or organs.

Endoscopic retrograde cholangiopancreatography (ERCP) A test that uses a thin, lighted tube and x-rays to see the pancreas and bile ducts.

Endoscope A thin, long tube with a light and camera used to see inside the body.

Endoscopic ultrasound (EUS) A test that uses a thin, lighted tube and sound waves to see inside the upper digestive track.

Enzymes Proteins that help to digest food.

Exocrine cells Cells that make proteins that help to digest food.

External beam radiation therapy (EBRT) Radiation therapy received from a machine outside the body.

Fatigue Severe tiredness despite getting enough sleep that limits one’s ability to function.

Fibrosis The scarring of supportive fibers in tissue.

Fine-needle aspiration (FNA) The removal of tissue or fluid with a thin needle to look for cancer cells.

First-line treatment The first set of treatments given to treat a disease.

Food and Drug Administration (FDA) A federal government agency that regulates drugs and food.

Gallbladder A small organ that holds digestive fluid from the liver.

Gastroenterologist A doctor who’s an expert in diseases of the digestive system.

General anesthesia A controlled loss of wakefulness from drugs.

Gland A group of cells or a small organ that makes fluids or chemicals that the body needs.


Part 8: Dictionary

Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Hives Itchy, swollen, and red skin caused by the body ridding itself of an invader.

Hormones Chemicals in the body that activate cells or organs.

Informed consent form A document describing a research study that must be read, understood, and signed by any person wanting to join.

Insulin A chemical that controls the amount of sugar in the blood.

Intensity-modulated radiation therapy (IMRT) Radiotherapy that uses small beams of different strengths based on the thickness of the tissue.

Jaundice Yellowing of the skin and eyes.

Laparoscope A thin, long tube with a light and camera used to see inside the belly area.

Laparoscopy A surgical test that inserts a thin, lighted tube through a small cut to see inside the belly area.

Leucovorin calcium A drug that improves how well 5-FU works.

Liver An organ that removes waste from the blood.

Liver function tests Tests of the blood for liver chemicals to see if the liver is working well.

Local anesthesia A loss of feeling in a small area of the body from the injection of drugs.

Local metastasis The spread of cancer cells from the first tumor to a nearby site.

Local pancreatic cancer A tumor that started in and hasn’t grown outside the pancreas.

Local treatment Medicine that affects cancer cells in one specific area of the body only.

Locally advanced pancreatic cancer A tumor that started in the pancreas and has grown into nearby blood vessels or structures.

Lymph A clear fluid containing white blood cells.

Lymph node Small groups of special disease-fighting cells located throughout the body.

Lymph vessel Tube-shaped ducts that carry lymph throughout the body.

Magnetic resonance cholangiopancreatography (MRCP) A test that uses radio waves and powerful magnets to make very clear pictures of the pancreas and bile ducts.

Magnetic resonance imaging (MRI) A test that uses radio waves and powerful magnets to see the shape and function of body parts.

Main pancreatic duct A tube-shaped vessel that drains digestive fluids from the pancreas into the gut.


Part 8: Dictionary

Medical history All health events and medications taken to date.

Metastasis The spread of cancer cells from the first tumor to another body part.

Metastatic pancreatic cancer A tumor that started in the pancreas and has spread to distant sites.

Microscope A tool that uses lenses to see things the eyes can’t.

Neoadjuvant treatment The treatment given before the main treatment used to cure disease.

Pancreas An organ that makes digestive fluids and chemicals to control blood sugar.

Pancreatic protocol CT Imaging methods using CT that clearly show the pancreas and nearby organs.

Pancreatic protocol MRI Imaging methods using MRI that clearly show the pancreas and nearby organs.

Pancreaticoduodectomy Surgery to remove the head of the pancreas and parts of other nearby organs, also called Whipple procedure.

Pathology report Written laboratory test results.

Percutaneous Through the skin.

Percutaneous endoscopic gastrostomy (PEG) A tube inserted though the side of the body into the stomach to give food.

Performance status A rating of one’s ability to do daily activities.

Physical exam A review of the body by a health expert for signs of disease.

Placebo A fake medicine that has no active agents.

Primary treatment The main treatment used to rid the body of cancer.

Primary tumor The first mass of cancer cells in the body.

Prognosis A prediction of the pattern and outcome of a disease based on clinical information.

Radiation therapy The use of radiation to treat cancer.

Radiologist A doctor who’s an expert in reading imaging tests.

Randomized Assignment to a group by chance.

Recurrent pancreatic cancer Cancer that started in the pancreas and returns after treatment.

Second-line treatment The next treatment(s) given when first-line treatment fails.

Sedative A drug that helps a person to relax or go to sleep.

Side effect An unplanned physical or emotional response to treatment.

Simulation The steps needed to prepare for radiation therapy.


Part 8: Dictionary

Part 8

Part 7

Part 6

Part 5

Part 4

Part 3

Part 2

Part 1

Spleen An organ to the left of the stomach that helps protect the body against disease.

Standard care The process that a health provider should follow to treat a medical problem.

Stent A tiny tube used to unblock a duct.

Stereotactic ablative radiotherapy (SABR) Radiotherapy that uses precise, high-dose beams.

Superior mesenteric artery The large tube-shaped vessel that carries blood from the heart to the gut.

Superior mesenteric vein The large tube-shaped vessel that returns blood from the gut to the heart.

Supportive care Treatment for symptoms of a disease.

Surgical margin The normal tissue around the tumor removed during surgery.

Systemic therapy Medicine that affects cancer cells throughout the body.

Targeted therapy Drugs that stop the growth process specific to cancer cells.

Three-dimensional conformal radiation therapy (3D-CRT) Radiotherapy that uses beams that match the shape of the tumor.

Total pancreatectomy Surgery to remove the entire pancreas and other nearby structures.

Vital organ A functional group of tissues in the body needed to live.

Whipple procedure Surgery to remove the head of the pancreas and parts of other nearby organs, also called pancreaticoduodectomy.


Credits

NCCN aims to improve the care given to patients with cancer. NCCN staff work with experts to create helpful programs and resources for many stakeholders. Stakeholders include health providers, patients, businesses, and others. One resource is the series of booklets for patients called the NCCN Patient Guidelines. Each booklet presents the standard of care for a type of cancer.

NCCN abbreviations and acronymsNCCN® National Comprehensive Cancer Network®

NCCN Patient Guidelines™ NCCN Guidelines for Patients™

NCCN Guidelines® NCCN Clinical Practice Guidelines in Oncology®

The patient booklets are based on guidelines written for doctors. These guidelines are called the NCCN Guidelines. They give a step-by-step course of care that many cancer doctors follow. Panels of experts create the NCCN Guidelines. Most of the experts are from the 21 NCCN Member Institutions. Panelists may include surgeons, radiation oncologists, medical oncologists, and patient advocates. Recommendations in the NCCN Guidelines are based on clinical trials and the experience of the panelists.

The people involved in the making of the guidelines for patients and doctors are listed next, starting with NCCN staff:

NCCN Patient GuidelinesDorothy A. Shead, MS Director Patient and Clinical Information Operations

Laura J. Hanisch, PsyD Medical Writer/ Patient Information Specialist

Lacey Meyer Associate Medical Writer

NCCN GuidelinesDeborah Freedman-Cass, PhD Oncology Scientist/ Senior Medical Writer

NCCN MarketingRene Dubnanski Graphic Design Specialist


NCCN Panel Members for Pancreatic Cancer

Margaret A. Tempero, MD/Chair UCSF Helen Diller Family Comprehensive Cancer CenterJ. Pablo Arnoletti, MD University of Alabama at Birmingham Comprehensive Cancer CenterStephen W. Behrman, MD University of Tennessee Cancer InstituteEdgar Ben-Josef, MD University of Michigan Comprehensive Cancer CenterAl B. Benson III, MD, FACP Robert H. Lurie Comprehensive Cancer Center of Northwestern UniversityEphraim S. Casper, MD Memorial Sloan-Kettering Cancer CenterSteven J. Cohen, MD Fox Chase Cancer CenterBrian Czito, MD Duke Cancer InstituteJoshua D.I. Ellenhorn, MD City of Hope Comprehensive Cancer CenterWilliam G. Hawkins, MD Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine

Joseph Herman, MD, MSc The Sidney Kimmel Comprehensive Cancer Center at Johns HopkinsJohn P. Hoffman, MD Fox Chase Cancer CenterAndrew H. Ko, MD UCSF Helen Diller Family Comprehensive Cancer CenterSrinadh Komanduri, MD Robert H. Lurie Comprehensive Cancer Center of Northwestern UniversityAlbert Koong, MD, PhD Stanford Cancer InstituteWen Wee Ma, MD Roswell Park Cancer InstituteMokenge P. Malafa, MD, FACS Moffitt Cancer Center Nipun B. Merchant, MD Vanderbilt-Ingram Cancer CenterSean J. Mulvihill, MD Huntsman Cancer Institute at the University of UtahPeter Muscarella II, MD The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute

Eric K. Nakakura, MD UCSF Helen Diller Family Comprehensive Cancer CenterJorge Obando, MD Duke Cancer InstituteMartha B. Pitman, MD Massachusetts General Hospital Cancer CenterAaron R. Sasson, MD UNMC Eppley Cancer Center at The Nebraska Medical CenterAnitra Talley Patient AdvocatePancreatic Cancer Action Network (PanCAN)Sarah P. Thayer, MD, PhD Massachusetts General Hospital Cancer CenterSamuel Whiting, MD, PhD Fred Hutchinson Cancer Research Center/Seattle Cancer Care AllianceRobert A. Wolff, MD The University of Texas MD Anderson Cancer CenterBrian M. Wolpin, MD, MPH Dana-Farber/Brigham and Women’s Cancer Center


NCCN Member institutions

City of Hope Comprehensive Cancer Center Los Angeles, California 800.826.4673 cityofhope.org

Dana-Farber/Brigham and Women’s Cancer Center Massachusetts General Hospital Cancer Center Boston, Massachusetts 800.320.0022 dfbwcc.org massgeneral.org/cancer

Duke Cancer Institute Durham, North Carolina 888.275.3853 www.dukecancerinstitute.org

Fox Chase Cancer Center Philadelphia, Pennsylvania 888.369.2427 foxchase.org

Huntsman Cancer Institute at the University of Utah Salt Lake City, Utah 877.585.0303 huntsmancancer.org

Fred Hutchinson Cancer Research Center/ Seattle Cancer Care Alliance Seattle, Washington 206.288.7222 • seattlecca.org 206.667.5000 • fhcrc.org

The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Baltimore, Maryland 410.955.8964 hopkinskimmelcancercenter.org

Robert H. Lurie Comprehensive Cancer Center of Northwestern University Chicago, Illinois 866.587.4322 cancer.northwestern.edu

Memorial Sloan-Kettering Cancer Center New York, New York 800.525.2225 mskcc.org

Moffitt Cancer CenterTampa, Florida 800.456.3434 moffitt.org

The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute Columbus, Ohio 800.293.5066 cancer.osu.edu Roswell Park Cancer Institute Buffalo, New York 877.275.7724 roswellpark.org

Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine St. Louis, Missouri 800.600.3606 siteman.wustl.edu

http://www.cityofhope.org

http://www.dfbwcc.org

http://www.massgeneral.org/cancer

http://www.dukecancerinstitute.org

http://www.foxchase.org

http://www.huntsmancancer.org

http://www.seattlecca.org

http://www.fhcrc.org

http://www.hopkinskimmelcancercenter.org

http://www.cancer.northwestern.edu

http://www.mskcc.org

http://www.moffitt.org

http://www.cancer.osu.edu

http://www.roswellpark.org

http://www.siteman.wustl.edu


NCCN Member institutions

St. Jude Children’s Research Hospital/ University of Tennessee Cancer Institute Memphis, Tennessee 888.226.4343 • stjude.org 877.988.3627 • utcancer.org

Stanford Cancer Institute Stanford, California 877.668.7535 cancer.stanfordhospital.com

University of Alabama at Birmingham Comprehensive Cancer Center Birmingham, Alabama 800.822.0933 ccc.uab.edu

UCSF Helen Diller Family Comprehensive Cancer Center San Francisco, California 800.888.8664 cancer.ucsf.edu

University of Michigan Comprehensive Cancer Center Ann Arbor, Michigan 800.865.1125 mcancer.org

UNMC Eppley Cancer Center at The Nebraska Medical Center Omaha, Nebraska 800.999.5465 unmc.edu/cancercenter

The University of Texas MD Anderson Cancer Center Houston, Texas 877.632.6789 mdanderson.org

Vanderbilt-Ingram Cancer Center Nashville, Tennessee 800.811.8480 vicc.org

http://www.stjude.org

http://www.utcancer.org

http://www.cancer.stanfordhospital.com

http://www.ccc.uab.edu

http://www.cancer.ucsf.edu

http://www.mcancer.org

http://www.unmc.edu/cancercenter

http://www.mdanderson.org

http://www.vicc.org


index

Anxiety 48

Bile ducts 6, 11, 13 – 15, 35, 38, 44, 47

Bilirubin 15, 35, 38

Biopsy 16, 34, 37 – 39, 41

CA 19-9 15, 35, 36, 38, 40

Cancer staging 14

Caregivers 49, 51

Chemotherapy 20 – 23

Clinical trials 27 – 32

Complementary and alternative medicine 24

Computed tomography 12, 16, 21, 34

Depression 48

Distal pancreatectomy 20

Ductal adenocarcinoma 4, 7

Endoscopic retrograde cholangiopancreatography 14, 34

Endoscopic ultrasound 13, 16, 34, 38

Laparoscopy 14, 16, 35, 38, 41

Lymph 8

Magnetic resonance cholangiopancreatography 13, 34

Magnetic resonance imaging 13, 34

Main pancreatic duct 6, 7

Member institutions 68, 69

Metastasis 8, 14, 15, 44, 45

National Comprehensive Cancer Network 2, 66

Pain 48

Pancreas 6, 7

Pancreaticoduodectomy 20

Panel members 67

Performance status 41 – 45

Radiation therapy 20 – 22

Side effects 22

Sleep 48

Surgery 14, 20, 22, 35

Survivorship 56

Targeted therapy 20, 22, 24

Tests for cancer 10 – 17, 34

Total pancreatectomy 20

Treatment guide 33 – 45

Treatment planning 53

NCCN Guidelines for Patients™

Version 1.2011

Also available at NCCN.comChr

onic

Mye

loge

nous

Leuk

emia

Also available at NCCN.com!NCCN Guidelines for Patients™

Breast, Colon, Lung, ovarian, and Prostate Cancers, Chronic Myelogenous Leukemia, Melanoma, Mesothelioma, and Multiple Myeloma

The same authoritative source referenced by physicians and other health care professionals is available for patients.

To request a printed copy: [email protected]

NCCN.org – For Clinicians • NCCN.com – For Patients

COMING SOON!Adolescent and Young Adult

Cancers

Pan

crea

tic C

ance

r

275 Commerce Drive, Suite 300, Fort Washington, PA 19034 • 215.690.0300

NCCN.org – For Clinicians, NCCN.com – For Patients

Support of this project was provided by the United Health Foundation.

Additional support provided by an anonymous donor.

NCCN.com-N-0037-0612

With support for distribution from the Pancreatic Cancer Action Network (PanCAN)

Date post:	11-Feb-2022
Category:	Documents
Upload:	others
View:	16 times
Download:	0 times

PDF information booklet-Click to open - Eric Kortz, MD

Documents