The liver is very often the first and most significant site of neuroendocrine tumor metastasis and for many people, managing the disease in the liver is the most challenging part of their NET journey. In this episode of NETWise, we’re going to focus on an organ that is almost never a NET primary site, but nevertheless is crucially important to many people with NETs: the liver. 

First, you’ll learn that the liver is a unique organ with a resiliency that is remarkable. Why is the liver such a frequent site for NET metastases?   Hear about the various treatments for liver neuroendocrine tumors and the risks and benefits of each of them. 

Cindy Lovelace and Katherine Mueller share their experiences, the treatments they have had for their liver NETs, and their advice for other patients.  

Dr. Mary Maluccio
Surgical Oncologist
Medical Director
Louisiana State University/Ochsner Medical Center NET Program

Dr. Satya Das 
Medical Oncologist
Co-Director, Neuroendocrine Tumor Program
Vanderbilt University Medical Center, Vanderbilt Ingram Cancer Center

Dr. Helen Te
Clinical Hepatologist
University of Chicago Medical Center

Dr. Xavier Keutgen
Director of the Neuroendocrine Tumor Center 
University of Chicago Medical Center

Dr. Osman Ahmed
Interventional Radiologist
University of Chicago Medical Center

Special thanks to Cindy Lovelace and Katherine Mueller for sharing their stories.  This episode is dedicated to Katherine’s memory.  We thank her family for their support of her inclusion in this podcast.

2021 KNOW YOUR NETS: Keeping your Liver Healthy

2020 KNOW YOUR NETS: How Much Can Liver Take – Treating with IR

2020 KNOW YOUR NETS: NETs Surgery: Risks and Benefits for Metastatic Tumors

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Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 17: Focus on Liver NETs appeared first on NETRF.

They say “you are what you eat”, and that can be a real challenge for people with neuroendocrine tumors. In this episode of NETWise, we’re going to look at all the ways that NETs interact with nutrition–how having a NET can affect your body’s ability to use nutrients properly, and how what you choose to eat can help or hurt your NET treatment and quality of life.

Learn about how neuroendocrine tumors can complicate digestion and how to identify food triggers that may cause symptoms.  You’ll hear about enzymes and supplements, and why what may be a healthy diet for some people may not be the best for people with NETs. 

You’ll hear from Devon Billings and Cindy Abel who share their stories and what they have learned about enjoying food and managing their nutrition.  

Dr. Michelle Kang-Kim, 
Gastroenterologist 
Co-Director of the Center for Carcinoid and Neuroendocrine
Tumors 
Mt. Sinai Medical Center, New York

Leigh Anne Burns, MD, RD, LDN
Registered Dietician

Greta Macaire
Oncology Dietician/Nutritionist 
University of California, San Francisco

Special thanks to Devon Billings and Cindy Abel who shared their personal stories for this episode.

Eating Right with NETs 

Nutrition and Neuroendocrine Tumors with Greta Macaire

NETs Nutrition with Luz Chavez 

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Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 16: NETs and Nutrition appeared first on NETRF.

When you’re fighting cancer, treating your tumors is only part of the care you need to continue living your best life. Caring for you as a person – mind, body, and spirit – is the focus of a dedicated team of interdisciplinary professionals who have a lot to offer people with neuroendocrine tumors. Just don’t be scared of the “P” word! 

Palliative care addresses all the issues impacting a person’s quality of life. These might include managing symptoms and side effects, managing pain, and dealing with the psychological and emotional ramifications of living with a serious illness.  A landmark study done at Harvard in 2010 demonstrated that cancer patients receiving dedicated palliative care on top of treatment for their cancer did better in a myriad of ways. 

In this episode, hear from physicians about what palliative care is—and is not.  Richard Redding and Laurel Howard share their stories about how palliative care has helped them deal with their illness.  Caregiver Roseanne Crane talks about her husband’s experience with a palliative care team. 

Dr. Steve Pantilat
Palliative Care
The University of California, San Francisco 

Dr. Sandy Tun
Pallaitive Care
The University of Chicago 

Abraham Labrada-Santiago
Chaplain
Mayo Clinic

Share Your Story

Causes of Neuroendocrine Tumors

The Emotions of Living with Neuroendocrine Tumors

Assistance and Support for Neuroendocrine Tumors

Living Well with Serious Illness

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 15: Supportive Care for the Mind, Body, and Soul appeared first on NETRF.

Pheochromocytomas and paragangliomas are rare neuroendocrine tumors that occur inside or outside the adrenal glands. Affecting approximately 1 in 3,000 people, pheochromocytomas and paragangliomas are unique tumors in that they can produce excessive amounts of “fight or flight” hormones that can cause over 100 different signs and symptoms. The symptoms can come and go and without warning but if left untreated can cause life-threatening damage. 

In this episode of NETWise, we will explain what these tumors are and how they are different from other NETs, the genetic aspects of these tumors; why it’s so important for pheochromocytoma and paraganglioma patients to be managed by a team of doctors who specialize in these tumors, surgical options; drug therapies and new nuclear medicine treatments that are offering hope to patients.

On average, it takes three years from the time a patient begins experiencing symptoms before a correct diagnosis is reached. You’ll have a chance to hear Eli Soto’s story. He was diagnosed in 2018 but doctors estimate the pheo was slowing growing inside him for more than a decade. Eli shares his incredible journey and the lessons he learned that could help other patients.

Bonnie Bennett
Nurse Coordinator for the Neuroendocrine Tumor program
University of Pennsylvania

Dr. Lauren Fishbein
Endocrinologist
UCHealth and the University of Colorado School of Medicine

Samantha Greenberg
Genetic Counselor and Paraganglioma Clinic Manager
Huntsman Cancer Institute 

Dr. Joseph Dillon
Endocrinologist
University of Iowa

Dr. Erik Mittra
Chief of Nuclear Medicine and Molecular Imaging
Oregon Health and Science University

Dr. Nancy Perrier
Head of Surgical Endocrinology
MD Anderson Cancer Center

Dr. Nancy Sharma
Medical Oncologist
Swedish Cancer Institute

Check out where pheochromocytomas and paragangliomas, both very rare NETs, can occur in the body.

Share Your Story

PheoPara Alliance

Causes of Neuroendocrine Tumors

Genetic Testing for NETs

Pheochromocytoma and Paraganglioma 

Pheo Para Center of Excellence Program

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Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 14: Pheos and Paras — NETs Known as “the Great Mimic” appeared first on NETRF.

What role do genetics play in neuroendocrine tumors (NETs)? Is genetic screening right for you? Should you have your family members screened for a hereditary gene? In this episode of NETWise, we will explore the relationship between NETs and DNA and explain why your genetic code might hold important implications for treatment strategies, prognosis, and the health of family members.

You’ll hear from Gretchen Thone, a genetic counselor at Geisinger Medical Center about how hereditary conditions can be passed from parents to children and the importance of seeking professional testing and counseling. Dr. Joseph Dillon from the University of Iowa, Dr. Lauren Fishbein from the University of Colorado and Dr. Mark Lewis from Intermountain Healthcare in Utah will share their expertise about the genes that are linked to syndromes that have an increased risk of developing  NETs.

You will also have an opportunity to hear from John Metzcar, a patient with Multiple Endocrine Neoplasia, Type I or “MEN-1” and Doug Karle, a patient with Von Hippel Lindau Syndrome. They will share their personal stories of living with a hereditary syndrome, the role genetic testing played  in their journey and how being a father shaped their experiences and decisions with genetic testing.

While most NETs are not caused by genetic mutations, here are some syndromes that are related to neuroendocrine tumors.

Share Your Story 

Causes of NETs  

Genetic Testing for NETs

Pheochromocytoma and Paraganglioma

Von Hippel Lindau Alliance

PheoPara Alliance

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 13: NETs and Genetic Screening appeared first on NETRF.

A diagnosis of neuroendocrine cancer impacts the person who receives the diagnosis, as well as those they love.  A spouse, child, or friend may take on the role of caregiver—a partner to the patient on the NET journey and advocate for their loved one.  It’s a job they did not anticipate or prepare for. This episode of NETWise focuses on caregivers to recognize and celebrate their essential place in the care team.  Hear their unique perspectives and what their support means to a patient.  

We invite you to express your love and gratitude to those in your family or community who care for you through a Love Note gift. Leave a message about why they mean the world to you and NETRF will send your message along with a Love Note to the person who has been by your side every step of the way. This is a beautiful way to donate to NET research; while recognizing those who give you a sense of hope.

Special thanks to Chuck Murphy, Katie Bourke, Tim Cape and Harold Bouis for sharing their stories.  This episode is dedicated in honor of Harold. 

Share Your Story

The Emotions of Living with Neuroendocrine Tumors

Assistance and Support for Neuroendocrine Tumors

Living Well with Serious Illness

LACNETS Caregiver Support Group

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 12: The Importance of Caregivers appeared first on NETRF.

Facing a diagnosis of neuroendocrine cancer, when you are a teenager or young adult, presents unique medical, social, financial, and even fertility challenges. How do you navigate the healthcare system? Who do you tell about your illness and when? Will you be able to have a career? Can you have children?

In this episode, hear from NET experts Dr. Jaydira Del Rivero and Dr. Manisha Shah about the diagnosis of NETs and prognosis in young people.  Kalen Fletcher, a Licensed Independent Clinical Social Worker, talks about young people’s emotional reactions to living with cancer.  Dr. Mark Lewis, a patient and physician, shares his story. We also hear from Sophia Hurtado and her mother Maryanne about Sophia’s courage.

The world of “AYA” patients—adolescents and young adults—does not have to be isolating. There is hope and support if you know where to look.

Causes of Neuroendocrine Tumors

The Emotions of Living with Neuroendocrine Tumors

stupidcancer.org

thesamfund.org

Request a Mailed Copy of our Neuroendocrine Cancer Guide

Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 11: AYA (Adolescents and Young Adults) and NETs appeared first on NETRF.

While there are more options, treatment for PNETs needs to be individualized since these tumors can vary significantly in stage, grade, and their ability to cause hormonal symptoms.  PNETs are complex because the pancreas plays an essential role in our bodies’ functions.   If you or someone you know has a PNET, this episode of NETWise discusses the importance of the pancreas and how PNETs are diagnosed.  You’ll also learn that there are several genetic syndromes that can increase vulnerability to PNETs. 

Hear about treatment options and research for PNETs from NET specialists Drs. Emily Bergsland and Phillip Phillip.  

Pancreatic Surgeries:  The pancreas is surrounded by important organs and made up of different parts. Take a look at these illustrations to improve your understanding  of pancreas anatomy and the different surgeries used to treat it.

PNETs

Treatment Options

VIDEO: Pancreas NET Breakout—Dr. Pam Kunz

VIDEO: Surgery for NETs—Dr. James Howe

VIDEO: Functional vs. nonfunctional tumors—Dr. Heloisa Soares

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Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Episode 10: Pancreatic NETs appeared first on NETRF.

Lung NETs are often overlooked, less frequently discussed, and more misunderstood than NETs that begin in the pancreas or GI tract. It can be frustrating for individuals and families living with a lung NET to find useful information or the right health care professional to work with. This special episode of NETWise covers all things Lung NETs.

Do you want to learn more about the classification of the different types of lung NETs? In this episode, we map out the lung NET classification system. While we mainly focus on typical and atypical carcinoids, we also included information about large cell and small cell lung cancer. We talk about each different type of lung NET, their distinctive characteristics, and what they have in common. We did not forget about DIPNECH. Information about this ultra-rare condition is also included in this episode.

This episode is for every person and family affected by lung NETs. We hear your call for more information. After you listen to this episode, you will have a better understanding of the classification system of lung NETs, surgical options (including the controversial ones), medical treatments, and how you can get involved with research to advocate for more approved treatment options.

LungNETS: See the different types of LungNETs and how they differ in their aggressiveness and likelihood of spreading.

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Lung NETs

A Look at Lung NETs

VIDEO: Medical Management of Lung NETs – Dr. Ed Wolin, Mount Sinai Medical Center

VIDEO: Basics of Lung NET Diagnosis and Treatment – Dr. Sukhmani Padda – Stanford University 

VIDEO: Surgical Treatment of Lung NETs – Dr. Andrew Kaufman – Mount Sinai

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Information and Resources for the Newly Diagnosed

NETRF YouTube Channel

The post Special Episode: Lung NETs appeared first on NETRF.