PNET

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Understanding PNET

 

What Is PNET?


Pancreatic neuroendocrine tumors, known as PNET, are also called islet cell tumors. They are a type of neuroendocrine cancer that starts in the pancreas. There are different kinds of PNET. Some PNET make and release different hormones. They also vary in size and how fast they grow.

PNET are different from other types of pancreatic cancer, because they form from neuroendocrine cells in your pancreas. Neuroendocrine cells are part of your body’s normal “control system.” When your brain and nervous system send messages, neuroendocrine cells release hormones and other chemical messengers to control bodily functions, like digestion, reproduction, airflow to the lungs, and responses to stress or injury.   

There are many subtypes of PNET; most are slow growing, but some may be aggressive.

 
What are symptoms caused by PNET?

PNET may cause symptoms because they produce large amounts of hormones, as well as symptoms that arise as the tumors grow and spread (metastasize).

Neuroendocrine tumors that release hormones are referred to as "functional."

There are many types of functional neuroendocrine tumors that can start in your pancreas. Your doctor may call it a name based on the hormone it releases.

Insulinomas

These tumors release insulin, a hormone that lowers sugar levels in your blood. They may cause the following symptoms:

  • Low blood sugar

  • Nervousness

  • Excess sweating

  • Blurred vision

  • Confusion

Glucagonomas

These tumors release glucagon, a hormone that raises sugar levels in your blood. They may cause the following symptoms:

  • Diabetes (elevated blood sugar)

  • Rash

  • Weight loss

Gastrinomas

These tumors release gastrin, a hormone that signals your stomach to produce digestive acids and enzymes. They may cause the following symptoms:

  • Ulcers

  • Abdominal pain

  • Diarrhea

  • Heartburn

VIPomas

These tumors release vasoactive intestinal peptide, a substance that stimulates the release of water and electrolytes in your intestines. They may cause the following symptoms:

  • Watery diarrhea

  • Abdominal pain and cramping

  • Dehydration

Somatostatinomas

These tumors release somatostatin, a hormone that stops the release of other hormones, including gastrin, insulin, and glucagon. They may cause the following symptoms:

  • Diabetes (elevated blood sugar)

  • Diarrhea

  • Weight loss

Nonfunctional neuroendocrine tumors

Neuroendocrine tumors that do not release hormones are called "nonfunctional." These tumors in your pancreas may cause the following symptoms:

  • Abdominal pain and cramping

  • Weight loss

Diagnosis & Management of PNET

 

Diagnosis of PNET

The path to diagnosis of a PNET can depend on the kind of tumor and whether or not it is causing a particular pattern of symptoms. In many cases, a PNET may be found by chance, when a patient is being scanned or tested for some other reason. Other patients may undergo testing because they are experiencing specific symptoms.

Regardless of how you came to be diagnosed, your doctor may order a number of tests to learn about your PNET and monitor your condition.

Some tests help your doctor find your neuroendocrine tumor while other tests help track changes in your NET over time.

Tests that can help confirm a PNET diagnosis

Click each tab below to learn about how these tests are performed.

Imaging Tests


Imaging tests use specialized machines to look at your organs and tissues. These tests may help with diagnosis of NET or to find out whether the tumor has grown or changed.

 

Computed Tomography

CT scan showing the location and size of a NET


A computed tomography (CT) scan shows the location and size of your tumor. Being scanned over time will help your doctor tell if your tumor has grown, changed, or spread.

How the test is performed

If your doctor orders your test with "contrast," you will either drink a fluid or receive an intravenous (IV) injection before the test. Contrast helps certain areas show up in the images. A CT scanner is shaped like a large doughnut standing on its side. You will lie on a table that slides you into the doughnut hole while the scanner takes pictures. You may also hear clicking or whirring noises. You may need to hold your breath to ensure the pictures are clear.

 

Magnetic Resonance Imaging

Patient receiving an MRI scan to examine a NET


A magnetic resonance imaging (MRI) scan shows the difference between healthy tissue and a tumor. Being scanned over time will help your doctor tell if your tumor has grown, changed, or spread.

How the test is performed

If your doctor orders your test with "contrast," you will get an IV injection before the test. Contrast helps certain areas show up better in the images. During the test, you will lie on a table while the machine takes pictures. It may make clicking or beeping noises. You need to stay very still to ensure the images are clear.

 

Octreoscan™

Octreoscan showing if NET are present


An Octreoscan may help find a tumor that may not have been seen by other tests. Being scanned over time will help your doctor tell if your tumor has spread. 

How the test is performed

Before the test, you will get an injection to place a "tracer" into your body. The tracer helps certain areas show up better in the images. You will lie on your back during the scan while the machine takes pictures. You can breathe normally and need to stay still to help ensure the images are clear.

Octreoscan is a trademark of Covidien AG or one of its affiliates.

 

Gallium Scan

Netspot® (Gallium Scan) imaging test


A gallium scan is an imaging test that uses a small amount of a radioactive tracer to help find NET that may otherwise be missed.

How the test is performed

Before the test, your doctor will advise you to drink plenty of water to make sure that you are well hydrated. Then you will receive an IV infusion that contains the tracer solution. You will be instructed to lie still while your body is scanned by a positron emission tomography (PET) device. 

After the scan is completed, you will be instructed to drink plenty of water and urinate frequently to flush the radioactive tracer out of your body.

Biochemical Tests


Biochemical tests measure the levels of certain substances in your blood or urine. Your doctor may order biochemical tests to help determine whether or not you actually have a PNET or to measure the amount of certain hormones.

 

Chromogranin A

Chromogranin A (CgA) blood test monitoring activity of PNET


The chromogranin A (CgA)* blood test is a good marker to help detect and monitor the activity of PNET. This includes functional tumors, which are the type that release (secrete) hormones. Elevated levels of CgA are found in nearly 60% of patients with PNET.

A CgA test is an accurate measure of your CgA level. However, increased levels of this marker may also be caused by other factors, such as renal failure, chronic atrophic gastritis, or the use of proton-pump inhibitors.

You may continue to have this test, so your doctor can measure your CgA levels over time.

How the test is performed

A needle is inserted into your arm to take a sample of blood.

The sample is sent to a lab to be tested. Measurements may vary with meal consumption, so patients are required to fast before a CgA test. CgA tests are performed every 3 to 6 months.

 *CgA is a protein found in NET cells, and it may be secreted into the blood. A blood sample is taken, and the level of CgA in the bloodstream is determined.

Management of PNET

Goals of PNET treatment


The overall goals of treatment for a PNET are to entirely remove the tumor, if possible, to help you manage the PNET.

Management of PNET depends on several factors, including the state of disease, size and location of the tumor, and whether the patient has any other serious medical conditions.

  • For patients whose NET has not spread very far, surgery to remove the PNET is the preferred treatment

  • For patients whose NET has spread and cannot be removed, other treatments, such as chemotherapy or targeted therapies, may be considered

 
Ongoing monitoring of PNET


Even if your PNET has been surgically removed, your doctor is likely to recommend periodic monitoring by CT scan or MRI. This kind of testing can help determine if a tumor has returned, as well as track how a PNET is responding to treatment.

Your doctor may recommend regular testing of chromogranin A (CgA) levels. Changes in CgA levels may indicate how well the PNET is responding to treatment.

Working With Your Health Care Team

 

Make the Most of Your Doctor Visits

Having a good relationship with your doctors and health care team is very important. Being prepared for your doctor visits can help you make the most of your time.

 
Your team of health care professionals

Your doctor or oncologist may suggest that you see a team of medical experts to care for your NET. This is called a multidisciplinary team. This team can help ensure that you receive the best possible care, because NET can cause different symptoms and can lead to other medical issues.

The HCPs below are specialists who may be part of your multidisciplinary team. There are other HCPs not noted who can also support NET patients. Read about the HCPs below to see how they can help care for your pancreatic neuroendocrine tumor.

Oncologist

Diagnoses and manages different types of cancerous tumors

Endocrinologist

Treats diseases of the endocrine system

Surgeon

Performs surgery and removes tumors

Pathologist

Uses a powerful microscope to look at samples of tumors, called a biopsy. This helps determine the type of tumor you have

Nuclear medicine tech

Creates medical pictures of tumors; called "imaging"

Radiologist

Uses imaging tests to diagnose and stage tumors, even those that have spread to other parts of the body

Nutritionist

Suggests changes to diet and nutrition that may help improve a patient's health

Nurse practitioner

Works alongside your doctors to care for you in the clinic and the hospital

Social worker

Helps you and your family deal with emotional and social issues, insurance problems, and treatment arrangements

Case manager

Oversees your care from diagnosis to recovery and helps you get the resources you need along the way

Ensure that you talk to your health care team


It's important to tell your health care team everything about your disease, including:

  • Symptoms

  • Allergies

  • Foods you eat

  • All medicines you take (prescription and over-the-counter)

  • Any changes in your daily habits

Be sure to include details about any changes in symptoms or new symptoms, especially if they become worse.

It's also important to share information about your daily life with your doctors, like your work or exercise habits. They will consider all of these details to help create a plan for you to manage your NET.

 

Ask your health care team questions


Take an active role in your care. Ask your doctors a lot of questions and write down the answers, so you can read them again later. Your doctors want you to ask questions. If there's something you don't understand, ask your doctors to explain more or slow down when speaking.

 

Keep a regular appointment schedule


Making a commitment to your medical appointments can help you establish a partnership with your health care team. Try to plan your day-to-day calendar far in advance so you won't have to cancel your medical appointment.

Living With PNET

 

What Can You Do to Live With PNET?

Like all cancer, a PNET can change your life. If you have been diagnosed with PNET, it is normal to feel confused, overwhelmed, afraid, and even angry. Your family and friends may feel the same way, too.

Remember, it's important to learn how to live with your neuroendocrine tumor. Understanding your condition may help you live as comfortably as possible.

 
Engage your health care team

Knowing whom to go to can help you better navigate your journey. If you or a loved one has been diagnosed with NET, you will likely have multiple health care professionals available to help you along the way. Some health care professionals who may be part of your health care team include the following:

  • Oncologist

  • Surgeon

  • Nurse

  • Nutritionist

  • Psychologist/social worker

 
Maintain a healthy lifestyle

Your doctor may suggest some things you can do to help make living with a NET as comfortable as possible.

  • Light exercise: Mild activity, such as walking, is best and can help reduce stress

  • Get a good night's sleep: Get plenty of sleep and take naps when you can

  • Avoid stress: Make time for yourself to do things you enjoy and keep a positive attitude

 
Continue your daily routine

Your family members and caregivers will be there for you throughout this journey. Don't be afraid to ask them for help. They can help you with daily activities and also help you cope with your feelings. They understand that the most important thing is for them to be there for you.

Your loved ones can help:

  • Provide emotional support

  • Take notes and ask questions at your doctor appointments

  • Keep track of your appointments and paperwork

  • Drive you to your appointments

  • Prepare meals and do the grocery shopping

Let the people in your life know how you feel and what you are going through. Asking them to be more involved can help you continue your regular routines.

 
Build a support network

In addition to your family, friends, and caregivers, there are other people like you and groups who want to help. There are patient groups for people with all types of NET. These groups work to improve the lives of people living with NET through support, awareness, education, research, and advocacy.

Building a support network is a great way to learn about your pancreatic neuroendocrine tumor and get more engaged with your care.

You should ask your doctor or nurse for more information about groups in your area.  

Tools, Resources, and Support

 

Learn About Available NET Resources

Galaxies of Hope


Embark on an interactive journey with the NET cancer community to gain a better understanding of your diagnosis. Navigate your emotional landscape, hear from real patients with NET cancer along the way, and find comfort in a galaxy created with you in mind.

Begin your journey.

 

Start exploring the Galaxies of Hope app by downloading on your mobile device or tablet!

Watch the teaser video
Watch the teaser video
PNET overview
PNET overview

Learn about PNET with this overview of its symptoms, diagnosis, and management.

NET journey road map


See the pathway of dealing with NET, from prior to official diagnosis, to treatment and beyond. Also learn how your doctor is there to help along the way.

Find Support Groups


You may have an uncommon disease, but you are not alone. Learn more about the patient advocacy and support groups for patients with NET and their families by visiting any of the below websites. Novartis is neither affiliated with nor endorses these organizations. The information provided by the organizations is meant for informational purposes only and is not meant to replace your doctor's medical advice.

CCF

Carcinoid Cancer Foundation

 

Healing NET Foundation

 

 

LACNETS

Los Angeles Carcinoid Neuroendocrine Tumor Society

 

NCAN

Neuroendocrine Cancer Awareness Network

 

NETRF

Neuroendocrine Tumor Research Foundation

 

NorCal CarciNET

Northern California CarciNET Community

 

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