Sources of Support
Taking Part in Cancer Research
About This Booklet
In 2013, more than 45,000 Americans will be diagnosed with cancer of the pancreas. Most will be over 65 years old.
There are two main types of pancreatic cancer.
Most often, pancreatic cancer starts in the ducts that carry pancreatic juices. This type is called exocrine pancreatic cancer. This booklet is about this type.
Much less often, pancreatic cancer begins in the cells that make hormones. This type may be called endocrine pancreatic cancer or islet cell cancer. This booklet is not about endocrine pancreatic cancer. NCI’s Cancer Information Service at 1–800–4–CANCER (1–800–422–6237) can provide information about this disease.
Learning about medical care for cancer of the pancreas can help you take an active part in making choices about your care. This booklet tells about:
- Diagnosis and staging
- Treatment and supportive care
- Taking part in research studies
This booklet has lists of questions that you may want to ask your doctor. Many people find it helpful to take a list of questions to a doctor visit. To help remember what your doctor says, you can take notes. You may also want to have a family member or friend go with you when you talk with the doctor—to take notes, ask questions, or just listen.
The widest part of the pancreas is called the head. The head of the pancreas is closest to the small intestine. The middle section is called the body, and the thinnest part is called the tail.
The pancreas makes pancreatic juices. These juices contain enzymes that help break down food. The juices flow through a system of ducts leading to the main pancreatic duct. The pancreatic juices flow through the main duct to the duodenum, the first part of the small intestine.
The pancreas is also a gland that makes insulin and other hormones. These hormones enter the bloodstream and travel throughout the body. They help the body use or store the energy that comes from food. For example, insulin helps control the amount of sugar in the blood.
Cancer begins in cells, the building blocks that make up tissues. Tissues make up the pancreas and the other organs of the body.
Normal cells grow and divide to form new cells as the body needs them. When normal cells grow old or get damaged, they die, and new cells take their place.
Sometimes, this process goes wrong. New cells form when the body doesn’t need them, and old or damaged cells don’t die as they should. The buildup of extra cells often forms a mass of tissue called a growth or tumor.
- Benign tumors (such as cysts):
- are usually not a threat to life
- can be removed and usually don’t grow back
- don’t invade the tissues around them
- don’t spread to other parts of the body
- Malignant growths:
- may be a threat to life
- sometimes can be removed but can grow back
- can invade and damage nearby tissues and organs
- can spread to other parts of the body
Pancreatic cancer can invade other tissues, shed cancer cells into the abdomen, or spread to other organs:
- Invade: A malignant pancreatic tumor can grow and invade organs next to the pancreas, such as the stomach or small intestine.
- Shed: Cancer cells can shed (break off) from the main pancreatic tumor. Shedding into the abdomen may lead to new tumors forming on the surface of nearby organs and tissues. The doctor may call these seeds or implants. The seeds can cause an abnormal buildup of fluid in the abdomen (ascites).
- Spread: Cancer cells can spread by breaking away from the original tumor. They can spread through the blood vessels to the liver and lungs. In addition, pancreatic cancer cells can spread through lymph vessels to nearby lymph nodes. After spreading, the cancer cells may attach to other tissues and grow to form new tumors that may damage those tissues.
When you get a diagnosis of cancer, it’s natural to wonder what may have caused the disease. Doctors can’t always explain why one person gets pancreatic cancer and another doesn’t. However, we do know that people with certain risk factors may be more likely than others to develop cancer of the pancreas. A risk factor is something that may increase the chance of getting a disease.
Studies have found the following risk factors for cancer of the pancreas:
- Smoking: Smoking tobacco is the most important risk factor for pancreatic cancer. People who smoke tobacco are more likely than nonsmokers to develop this disease. Heavy smokers are most at risk.
- Diabetes: People with diabetes are more likely than other people to develop pancreatic cancer.
- Family history: Having a mother, father, sister, or brother with pancreatic cancer increases the risk of developing the disease.
- Inflammation of the pancreas: Pancreatitis is a painful inflammation of the pancreas. Having pancreatitis for a long time may increase the risk of pancreatic cancer.
- Obesity: People who are overweight or obese are slightly more likely than other people to develop pancreatic cancer.
Many other possible risk factors are under active study. For example, researchers are studying whether a diet high in fat (especially animal fat) or heavy drinking of alcoholic beverages may increase the risk of pancreatic cancer. Another area of active research is whether certain genes increase the risk of disease.
Many people who get pancreatic cancer have none of these risk factors, and many people who have known risk factors don’t develop the disease.
Early cancer of the pancreas often doesn’t cause symptoms. When the cancer grows larger, you may notice one or more of these common symptoms:
- Dark urine, pale stools, and yellow skin and eyes from jaundice
- Pain in the upper part of your belly
- Pain in the middle part of your back that doesn’t go away when you shift your position
- Nausea and vomiting
- Stools that float in the toilet
Also, advanced cancer may cause these general symptoms:
- Weakness or feeling very tired
- Loss of appetite or feelings of fullness
- Weight loss for no known reason
These symptoms may be caused by pancreatic cancer or by other health problems. People with these symptoms should tell their doctor so that problems can be diagnosed and treated as early as possible.
If you have symptoms that suggest cancer of the pancreas, your doctor will try to find out what’s causing the problems.
You may have blood or other lab tests. Also, you may have one or more of the following tests:
- Physical exam: Your doctor feels your abdomen to check for changes in areas near the pancreas, liver, gallbladder, and spleen. Your doctor also checks for an abnormal buildup of fluid in the abdomen. Also, your skin and eyes may be checked for signs of jaundice.
- CT scan: An x-ray machine linked to a computer takes a series of detailed pictures of your pancreas, nearby organs, and blood vessels in your abdomen. You may receive an injection of contrast material so your pancreas shows up clearly in the pictures. Also, you may be asked to drink water so your stomach and duodenum show up better. On the CT scan, your doctor may see a tumor in the pancreas or elsewhere in the abdomen.
- Ultrasound: Your doctor places the ultrasound device on your abdomen and slowly moves it around. The ultrasound device uses sound waves that can’t be heard by humans. The sound waves make a pattern of echoes as they bounce off internal organs. The echoes create a picture of your pancreas and other organs in the abdomen. The picture may show a tumor or blocked ducts.
- EUS: Your doctor passes a thin, lighted tube (endoscope) down your throat, through your stomach, and into the first part of the small intestine. An ultrasound probe at the end of the tube sends out sound waves that you can’t hear. The waves bounce off tissues in your pancreas and other organs. As your doctor slowly withdraws the probe from the intestine toward the stomach, the computer creates a picture of the pancreas from the echoes. The picture can show a tumor in the pancreas. It can also show how deeply the cancer has invaded the blood vessels.
- ERCP: The doctor passes an endoscope through your mouth and stomach, down into the first part of your small intestine. Your doctor slips a smaller tube through the endoscope into the bile ducts and pancreatic ducts. (See picture of ducts.) After injecting dye through the smaller tube into the ducts, the doctor takes x-ray pictures. The x-rays can show whether the ducts are narrowed or blocked by a tumor or other condition.
- MRI: A large machine with a strong magnet linked to a computer is used to make detailed pictures of areas inside your body.
- PET scan: You’ll receive an injection of a small amount of radioactive sugar. The radioactive sugar gives off signals that the PET scanner picks up. The PET scanner makes a picture of the places in your body where the sugar is being taken up. Cancer cells show up brighter in the picture because they take up sugar faster than normal cells do. A PET scan may show a tumor in the pancreas. It can also show cancer that has spread to other parts of the body.
- Needle biopsy: The doctor uses a thin needle to remove a small sample of tissue from the pancreas. EUS or CT may be used to guide the needle. A pathologist uses a microscope to look for cancer cells in the tissue.
You may want to ask the doctor these questions before having a biopsy:
- Do you recommend that I have a biopsy? If so, why?
- How long will it take? Will I be awake? Will it hurt?
- Is there a risk that a needle biopsy procedure will cause the cancer to spread? What are the chances of infection or bleeding after the biopsy? Are there any other risks?
- How soon will I know the results? How do I get a copy of the pathology report?
- If I do have cancer, who will talk with me about treatment? When?
If cancer of the pancreas is diagnosed, your doctor needs to learn the extent (stage) of the disease to help you choose the best treatment.
Staging is a careful attempt to find out the following:
- The size of the tumor in the pancreas
- Whether the tumor has invaded nearby tissues
- Whether the cancer has spread, and if so, to what parts of the body
When cancer of the pancreas spreads, the cancer cells may be found in nearby lymph nodes or the liver. Cancer cells may also be found in the lungs or in fluid collected from the abdomen.
When cancer spreads from its original place to another part of the body, the new tumor has the same kind of abnormal cells and the same name as the original (primary) tumor. For example, if pancreatic cancer spreads to the liver, the cancer cells in the liver are actually pancreatic cancer cells. The disease is metastatic pancreatic cancer, not liver cancer. It’s treated as pancreatic cancer, not as liver cancer. Doctors sometimes call the new tumor in the liver “distant” disease.
To learn whether pancreatic cancer has spread, your doctor may order CT scans or EUS.
Also, a surgeon may look inside your abdomen with a laparoscope (a thin, tube-like device that has a light and a lens for seeing inside the body). The surgeon inserts the laparoscope through a small incision in your belly button. The surgeon will look for any signs of cancer inside your abdomen. You’ll need general anesthesia for this exam.
These are the stages of cancer of the pancreas:
- Stage I: The tumor is found only in the pancreas.
- Stage II: The tumor has invaded nearby tissue but not nearby blood vessels. The cancer may have spread to the lymph nodes.
- Stage III: The tumor has invaded nearby blood vessels.
- Stage IV: The cancer has spread to a distant organ, such as the liver or lungs.
The treatment that’s right for you depends mainly on the following:
- The location of the tumor in your pancreas
- Whether the disease has spread
- Your age and general health
At this time, cancer of the pancreas can be cured only when it’s found at an early stage (before it has spread) and only if surgery can completely remove the tumor. For people who can’t have surgery, other treatments may be able to help them live longer and feel better.
You may want to talk with your doctor about taking part in a clinical trial. Clinical trials are research studies testing new treatments. They are an important option for people with all stages of cancer of the pancreas. See the Taking Part in Cancer Research section.
You may have a team of specialists to help plan your treatment. Your doctor may refer you to a specialist, or you may ask for a referral. Specialists who treat cancer of the pancreas include surgeons, medical oncologists, radiation oncologists, and gastroenterologists. Your health care team may also include an oncology nurse.
Your health care team can describe your treatment choices, the expected results of each, and the possible side effects. Because cancer treatments often damage healthy cells and tissues, side effects are common. These side effects depend on many factors, including the type and extent of treatment. Side effects may not be the same for each person, and they may even change from one treatment session to the next. Before treatment starts, ask your health care team about possible side effects and how treatment may change your normal activities. You and your health care team can work together to develop a treatment plan that meets your needs.
You may want to ask your doctor these questions before you begin treatment:
- What is the stage of the disease? Has the cancer spread?
- Do I need any more tests to find out whether I can have surgery?
- What is the goal of treatment? What are my treatment choices? Which do you suggest for me? Why?
- What are the expected benefits of each kind of treatment?
- What can I do to prepare for treatment?
- Will I need to stay in the hospital? If so, for how long?
- What are the risks and possible side effects of each treatment? How can side effects be managed?
- How will you treat my pain?
- What is the treatment likely to cost? Will my insurance cover it?
- How will treatment affect my normal activities? Am I likely to have eating problems or other problems?
- Would a research study (clinical trial) be a good choice for me?
- Can you recommend other doctors who could give me a second opinion about my treatment options?
- How often should I have checkups?
SurgerySurgery may be an option for people with an early stage of pancreatic cancer. The surgeon usually removes only the part of the pancreas that has cancer. But, in some cases, the whole pancreas may be removed.
The type of surgery depends on the location of the tumor in the pancreas. Surgery to remove a tumor in the head of the pancreas is called a Whipple procedure. The Whipple procedure is the most common type of surgery for pancreatic cancer. You and your surgeon may talk about the types of surgery and which may be right for you.
In addition to part or all of your pancreas, the surgeon usually removes the following nearby tissues:
- Common bile duct
- Part of your stomach
Also, the surgeon may remove your spleen and nearby lymph nodes.
Surgery for pancreatic cancer is a major operation. You will need to stay in the hospital for one to two weeks afterward. Your health care team will watch for signs of bleeding, infection, or other problems.
It takes time to heal after surgery, and the time needed to recover is different for each person. You may have pain or discomfort for the first few days. Medicine can help control your pain. Before surgery, you should discuss the plan for pain relief with your health care team. After surgery, they can adjust the plan if you need more pain control. See the Supportive Care section.
It’s common to feel weak or tired for a while. You may need to rest at home for one to three months after leaving the hospital.
After surgery, it may be hard to digest food. For four to six weeks after Whipple surgery, you may feel bloated or full, and you may have nausea and vomiting. A dietitian can help you change your diet to reduce your discomfort. Problems with eating usually go away within three months. See the Nutrition section.
You may want to ask your doctor these questions before having surgery:
- What type of surgery do you recommend for me? Why?
- Will tissues other than the tumor in the pancreas be removed? Why?
- How many times have you performed this surgery? How many pancreatic cancer patients do you treat each year?
- How will I feel after surgery?
- Am I likely to have eating problems? Will I need a special diet? Who can help me if I have a problem?
- If I have pain, how will you control it?
- How long will I be in the hospital?
- Will I have any long-term effects because of the surgery?
Chemotherapy uses drugs to kill cancer cells. Most people with pancreatic cancer get chemotherapy. For early pancreatic cancer, chemotherapy is usually given after surgery, but in some cases, it’s given before surgery. For advanced cancer, chemotherapy is used alone, with targeted therapy, or with radiation therapy.
Chemotherapy for pancreatic cancer is usually given by vein (intravenous). The drugs enter the bloodstream and travel throughout your body.
Chemotherapy may be given in an outpatient part of the hospital, at the doctor’s office, or at home. Rarely, you may need to stay in the hospital.
The side effects depend mainly on which drugs are given and how much. Chemotherapy kills fast-growing cancer cells, but the drugs can also harm normal cells that divide rapidly:
- Blood cells: When drugs lower the levels of healthy blood cells, you’re more likely to get infections, bruise or bleed easily, and feel very weak and tired. Your health care team will check for low levels of blood cells. If your levels are low, your health care team may stop the chemotherapy for a while or reduce the dose of the drug. There are also medicines that can help your body make new blood cells.
- Cells in hair roots: Chemotherapy may cause hair loss. If you lose your hair, it will grow back after treatment, but the color and texture may be changed.
- Cells that line the digestive tract: Chemotherapy can cause a poor appetite, nausea and vomiting, diarrhea, or mouth and lip sores. Your health care team can give you medicines and suggest other ways to help with these problems. They usually go away when treatment ends.
Some drugs used for pancreatic cancer also may cause tingling or numbness in your hands and feet. Your health care team can suggest ways to control many of these side effects.
You may wish to read the NCI booklet Chemotherapy and You.
People with cancer of the pancreas who can’t have surgery may receive a type of drug called targeted therapy along with chemotherapy.
Targeted therapy slows the growth of pancreatic cancer. It also helps prevent cancer cells from spreading. The drug is taken by mouth.
Side effects may include diarrhea, nausea, vomiting, a rash, and shortness of breath. You may want to read the NCI fact sheet Targeted Cancer Therapies.
You may want to ask your doctor these questions about chemotherapy or targeted therapy:
- Why do I need this treatment?
- Which drug or drugs will I have?
- How do the drugs work?
- When will treatment start? When will it end?
- Will I have any long-term side effects?
Radiation therapy uses high-energy rays to kill cancer cells. It can be given along with other treatments, including chemotherapy.
The radiation comes from a large machine. The machine aims beams of radiation at the cancer in the abdomen. You’ll go to a hospital or clinic 5 days a week for several weeks to receive radiation therapy. Each session takes about 30 minutes.
Although radiation therapy is painless, it may cause other side effects. The side effects include nausea, vomiting, or diarrhea. You may also feel very tired. Your health care team can suggest ways to treat or control these side effects.
You may find it helpful to read the NCI booklet Radiation Therapy and You.
You may want to ask your doctor these questions about radiation therapy:
- Why do I need this treatment?
- When will the treatments begin? When will they end?
- How will I feel during treatment?
- How will we know if the radiation treatment is working?
- Will I have any long-term side effects?
Before starting treatment, you may want a second opinion about your diagnosis, the stage of cancer, and the treatment plan. You may also want to find a medical center that has a lot of experience treating people with pancreatic cancer.
Some people worry that the doctor will be offended if they ask for a second opinion. Usually the opposite is true. Most doctors welcome a second opinion. And many health insurance companies will pay for a second opinion if you or your doctor requests it. Some companies require a second opinion.
If you get a second opinion, the second doctor may agree with your first doctor’s diagnosis and treatment plan. Or, the second doctor may suggest another approach. Either way, you have more information and perhaps a greater sense of control. You can feel more confident about the decisions you make, knowing that you’ve looked at all of your options.
It may take some time and effort to gather your medical records and see another doctor. In most cases, it’s not a problem to take several weeks to get a second opinion. The delay in starting treatment usually will not make treatment less effective. To make sure, you should discuss this delay with your doctor.
There are many ways to find a doctor for a second opinion. Ask your doctor, a local or state medical society, or a nearby hospital or medical school for names of specialists.
Also, you can request a consultation with specialists at the National Institutes of Health Clinical Center in Bethesda, Maryland. Specialists in NCI’s Surgery Branch provide consultations and surgical care for people with pancreatic cancer. The telephone number is 301– 496– 4164.
In addition, you can get information about treatment centers near you from NCI’s Cancer Information Service at 1–800–4–CANCER (1–800–422–6237) and LiveHelp.
Other sources can be found in the NCI fact sheet How To Find a Doctor or Treatment Facility If You Have Cancer.
Cancer of the pancreas and its treatment can lead to other health problems. You can have supportive care before, during, and after cancer treatment.
Supportive care is treatment to control pain and other symptoms, to relieve the side effects of therapy, and to help you cope with the feelings that a diagnosis of cancer can bring. You may receive supportive care to prevent or control these problems and to improve your comfort and quality of life during treatment.
Cancer of the pancreas and its treatment may lead to pain. Your doctor or a specialist in pain control can suggest ways to relieve or reduce pain. You may want to ask if your hospital has a palliative care team.
There are many ways to relieve or reduce pain:
- Pain medicine: Your health care team can suggest medicines that will relieve pain. If you have constipation or other side effects from the medicine, your health care team will help you manage the problems.
- Nerve block: The doctor may inject alcohol into the area around certain nerves in the abdomen to block the pain.
- Other methods: You may find that massage or acupuncture helps relieve pain. Also, you may learn other methods, such as hypnosis, relaxation, music therapy, imagery, and biofeedback.
More information about pain control can be found in the NCI booklet Pain Control.
If the tumor in the pancreas grows large enough to squeeze the common bile duct or block the duodenum, your health care team can suggest ways to help:
- Surgery: The surgeon can create a bypass through the blocked bile duct or duodenum. A bypass allows fluids to flow through the digestive tract. It can help relieve jaundice and pain resulting from the blockage.
- Stent: The doctor uses an endoscope to place a stent in the blocked area. A stent is a tiny plastic or metal mesh tube that helps keep the duct or duodenum open.
Sadness and Other FeelingsIt’s normal to feel sad, anxious, or confused after a diagnosis of a serious illness. Some people find it helpful to talk about their feelings. See the Sources of Support section.
Nutrition is an important part of your care. Getting the right nutrition can help you feel better and have more strength. However, pancreatic cancer and its treatment may make it hard for you to digest food and to maintain your weight. You may not feel like eating for a variety of reasons, such as feeling tired or feeling full soon after eating.
You may find it helpful to work with a dietitian. A dietitian can help you choose foods and nutrition products that will meet your needs and can make you feel more comfortable with eating. Your health care team will check you for weight loss and ask whether you are having problems with nausea, vomiting, or diarrhea. If your nutrition problems do not get better quickly enough, you may be offered another way of getting nutrition, such as a feeding tube.
For general information about nutrition during cancer treatment, you may want to read the NCI booklet Eating Hints. It contains useful ideas and recipes.
After surgery, your health care team will check you for problems with digestion or with your blood sugar level, and they will help you manage such changes. If you have problems with digestion, you may need to take a supplement to replace the digestive enzymes that are normally made by the pancreas. You may also need to take minerals and vitamins. If you have problems with the sugar level in your blood, you may need to take medicine to control blood sugar.
You’ll need regular checkups (such as every 3 months) after treatment for cancer of the pancreas. Checkups help ensure that any changes in your health are noted and treated if needed. If you have any health problems between checkups, you should contact your doctor.
Cancer of the pancreas may come back after treatment. Your doctor will check for return of cancer. Checkups may include a physical exam, blood tests, or CT scans.
NCI has publications to help answer questions about follow-up care and other concerns. You may find it helpful to read the NCI booklet Facing Forward: Life After Cancer Treatment. You may also want to read the NCI fact sheet Follow-up Care After Cancer Treatment.
Sources of Support
Learning that you have cancer of the pancreas can change your life and the lives of those close to you. These changes can be hard to handle. It’s normal for you, your family, and your friends to need help coping with the feelings that a diagnosis of cancer can bring.
Concerns about treatments and managing side effects, hospital stays, and medical bills are common. You may also worry about caring for your family, keeping your job, or continuing daily activities.
Here’s where you can go for support:
- Doctors, nurses, and other members of your health care team can answer questions about treatment, working, or other activities.
- Social workers, counselors, or members of the clergy can be helpful if you want to talk about your feelings or concerns. Often, social workers can suggest resources for financial aid, transportation, home care, or emotional support.
- Support groups also can help. In these groups, patients or their family members meet with other patients or their families to share what they have learned about coping with the disease and the effects of treatment. Groups may offer support in person, over the telephone, or on the Internet. You may want to talk with a member of your health care team about finding a support group.
- NCI’s Cancer Information Service at 1–800–4–CANCER (1–800–422–6237) and at LiveHelp can help you locate programs, services, and NCI publications. They can send you a list of organizations that offer services to people with cancer.
For tips on coping, you may want to read the NCI booklet Taking Time: Support for People With Cancer.
Taking Part in Cancer Research
Doctors all over the world are conducting many types of clinical trials (research studies in which people volunteer to take part). Clinical trials are designed to find out whether new treatments are safe and effective.
Doctors are studying new drugs, other treatments, and their combinations, including combinations of surgery, chemotherapy, targeted therapy, and radiation therapy.
Even if the people in a trial do not benefit directly, they may still make an important contribution by helping doctors learn more about cancer of the pancreas and how to control it. Although clinical trials may pose some risks, doctors do all they can to protect their patients.
If you’re interested in being part of a clinical trial, talk with your doctor. You may want to read the NCI booklet Taking Part in Cancer Treatment Research Studies. It describes how treatment studies are carried out and explains their possible benefits and risks.
NCI’s Web site includes a section on clinical trials at http://www.cancer.gov/clinicaltrials. It has general information about clinical trials as well as detailed information about specific ongoing studies of cancer of the pancreas. NCI’s Cancer Information Service at 1–800–4–CANCER (1–800–422–6237) and at LiveHelp can answer questions and provide information about clinical trials.
Also, you may wish to contact NCI’s Surgery Branch at the National Institutes of Health Clinical Center in Bethesda, Maryland. The telephone number is 301– 496– 4164.