NETWise

This episode is part of a collaboration with the FlaNET Carcinoid Community, focusing on financial toxicity. We explore some of the major costs that can arise throughout the neuroendocrine cancer journey and share guidance on how to find helpful resources.

When it comes to PRRT (Peptide Receptor Radionuclide Therapy), patients often have big questions and concerns. In this episode, we dive into the most common questions surrounding PRRT and the broader field of radiopharmaceutical treatments for neuroendocrine cancer. This is an exciting field as there is much more research being done into radiopharmaceuticals for neuroendocrine cancer. Tune in as we break down key insights from doctors and researchers to help you better understand this important treatment option.

Artificial intelligence (AI) has become a hot topic, making its way into everyday conversations and industries worldwide. While AI technologies have been around for years, recent advancements are accelerating their impact—especially in healthcare. From improving cancer research to enhancing diagnosis and treatment, AI is reshaping the future of medicine. In this episode of NETWise, we dive into how AI is driving progress in neuroendocrine cancer research and explore its potential applications in the clinic. Could AI revolutionize the way NETs are diagnosed and managed? Join us as we uncover the possibilities.

To access the NET Clinical Tr...

Happiness is something that can be difficult to find in life, no matter what. Having an uncommon cancer can make it infinitely harder. In this episode of NETWise, we’re going to talk about what happiness means, and how cancer can affect the way we think about it. We’ll also talk about the things we all can do to be more resilient.

NET specialists included in this episode

Use our episode i

Research is at the very core of what we do at NETRF. We believe it is the key to discovering cures and more effective treatments for neuroendocrine cancers. In this episode of NETWise, we will bring you into one of our most exciting yearly events: NETRF’s 2024 Neuroendocrine Cancer Research Symposium. You will hear ways the needle has been pushed in each area of research in the past year. We’ll start with advances in basic research and move through the spectrum to finish with updates that have clinical applications. Click here to download a transcript of this episode.

In this episode, we’re diving deep into the symptoms caused by functional neuroendocrine tumors (NENs) and, more importantly, how to effectively manage them. Whether you’re navigating symptomatic NETs yourself or supporting someone who is, this conversation will arm you with fresh insights and practical tools to take control. This is a revamped and enriched update of an episode originally released in 2020. A special thank you to Dr. Eric Nakakura for lending his expertise to this valuable update. Thank you to Maureen Edwards and Cy Ball for sharing their stories. Cy Ball, whose story we heard, passed away. We appr...

Lately, there’s been a lot of talk about immunotherapy, which has transformed treatment for patients with some kinds of cancer. So far, patients with NETs and NECs have largely been excluded from these developments. But there’s hope that the benefits of immunotherapy could one day extend to NENs. In this episode of NETWise, we’re going to explore current research into immunotherapy, and what it might mean for patients. Daniel M. Halperin, MD, Associate Professor and Vice Chair for Cl

Whether or not a patient has access to care is one of the most important factors in how their cancer journey plays out. It is crucial for timely diagnosis and effective treatment of neuroendocrine neoplasms. And when you live in a rural place, that access can be complicated. We often talk about how important it is to seek out specialized care for NENs – but we don’t often talk about how challenging it can be to access that kind of care. In this episode, we’re going to focus on barriers to care that people in rural areas tend to fac...

Neuroendocrine neoplasms (NENs) can arise in many locations throughout the body; they can grow rapidly; and they can occur under unique circumstances. In this episode of NETWise, we talk through some of the more uncommon locations – and situations – where neuroendocrine neoplasms arise. This episode is devoted to some of those more uncommon situations.

Thank you to the NET specialists who helped with this episode:

If you’re new to this show, welcome. You’re in the right place. 

Maybe you’ve been recently diagnosed, or maybe you’re a longtime patient. Maybe someone you care about has neuroendocrine cancer. In any case, you probably have questions. What exactly is this disease? What is it doing in your body right now? And what should you be doing about it? This series will help you find answers to those questions. We’ll speak with some of the best experts on neuroendocrine tumors from all around the world, and you’ll hear NET patients sha

In the past few months, there’s been a lot of buzz in the NET community about histotripsy. This newly-approved procedure holds a lot of promise for treating NETs, and may prove to be even more exciting in the future. In this episode of NETwise, we’re going to tell you everything we know about this new treatment: how it works, how it came to be, and what it means for NET patients. 

Thank you to Mary Seibert for sharing her NET story.  

Experts in this episode:

In this episode of NETWise, we talk about the experiences of young people living with NETs. This is an update to an episode that was originally published in 2020. A special thank you to  Dr. Aman Chauhan, a medical oncologist who leads the University of Miami Neuroendocrine Cancer Program and Dr. Jaydira Del Rivero, a medical oncologist and a board-certified endocrinologist at the National Institute of Health, for their help with this episode update. 

These patients face a specific set of challenges unique to their age and need particular kinds of help navigating the NET journey. This group of...

When one is diagnosed with an illness, like NETs, mortality can come to the forefront. Even if your NET journey presents a trajectory of being chronic and is stable, it is not uncommon to have thoughts about disease progression and mortality. 

There is also a lot of stigma and discomfort in talking about end of life. The complex nature of neuroendocrine cancer and the variability in its progression can make it hard to predict outcomes, adding to the uncertainty and difficulty in discussing the topic. There is also power in knowing more about this journey and especially t...

Some of the rarest, most complex, and difficult NETs are known as pheochromocytomas and paragangliomas. This is an updated version of an episode that first aired in 2021. A special thank you to Dr. Erik Mittra Chief of Nuclear Medicine and Molecular Imaging at Oregon Health and Science University for his expert assistance with this episode update. This episode update addresses some changes in treated pheos and paras. Between 2018 and 2023, there was an FDA-approved treatment on the market for unresectable, metastatic pheos and paras. This medication was called Azedra. It used similar technology to PRRT, delivering radioactive isotopes to the...

Research is at the very core of what we do at NETRF. We believe it is the key to discovering cures and more effective treatments for neuroendocrine cancers. In this episode of NETWise, we share some of the most important developments in NET research that happened in 2023,  and look back on the progress made in the past year. Lastly,  we’ll look ahead to new developments on the horizon.   

NET experts in this episode:

If you’re dealing with NETs, you likely have encountered fatigue in various forms. The spectrum of fatigue spans from temporary and inconvenient to persistent and debilitating. It can be a source of frustration, stress, and, at times, a feeling of isolation, as it may not be readily apparent to others. Despite its prevalence, fatigue often takes a backseat to the primary cancer concerns. However, delving into the distinct causes of fatigue affecting NET patients and exploring effective strategies to manage it can prove beneficial. In this installment of NETWise, our focus shifts to the often-overlooked aspect of fatigue.

One of the things that sets neuroendocrine tumors apart from other kinds of cancer is that they can occur almost anywhere in the body. Those different locations — or primary sites — can mean the NET takes on different characteristics, and requires different kinds of treatment. In previous episodes of this show, we’ve talked about lung NETs, pancreatic NETs, small bowel NETs, and gynecological NETs. Today, we’re going to be talking about skin NETs. These are known as Merkel cell carcinomas. Merkel cell carcinoma can be challenging to diagnose and treat, making early detection and medical attention crucial...

In this episode, we’re talking in depth about one of the most exciting and widely discussed treatments for NETs: PRRT.

This is a revised version of an episode that originally released in 2020. A lot has happened since then in the development of nuclear medicine treatments like PRRT, and we’re excited to bring you information that is updated and current. A special thank you to Dr. Courtney Lawhn Heath, a nuclear radiologist at the University of California, San Francisco for helping to update this NETWise episode.

This NETWise podcast discusses Peptide Receptor Radi...

We hear a lot about the need for diversity and inclusion in health care, and we know there is a need for more diversity in NET clinical trials. In looking at the issue of race and medicine there are four major factors that influence health outcomes and that deserve scientific investigation. First, is your genes and your specific ancestry. Second is epigenetics, which is the study of how your behaviors and environment can cause changes that affect the way your genes work. Third, is how you are treated by others, especially how you are treated by health care staff...

This is an updated NETWise episode. A special thank you to Dr. Aman Chauhan for his expert knowledge and help with this special NETWise update.

Did you know that about 1 in 4 NETs develop in the lungs?

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.

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This is a revised version of an episode that first aired in December of 2020, where we focused on diagnosis and treatment of NETs that start in the most common site: the small intestine.

A special thank you to Dr. Mark Lewis for his expert knowledge and help with this special NETWise update.

Did you know that 12% of gastrointestinal (GI) NETs are found in the small bowel? The small bowel, or the small intestine, is one of the most common places NETs form. If you are living with a small bowel NET, this episode...

This episode of NETWise expands our series looking at all possible NET primary sites, with a conversation about one of the very rarest forms of NETs – those that originate in the female reproductive organs.

As we end our mini-series about adjusting to the new normal of your life with NETs, we wanted to take an episode to highlight one of the most emotionally challenging situations that might confront a person who is newly diagnosed — learning you have cancer while you are raising children.

Parenting is already one of the most challenging and emotionally fraught things anyone can do, and then adding a serious illness on top of it can be downright overwhelming. If this is the situation you find yourself in, we hope this episode will help you to find the st...

The post NETs 101: En Espanol appeared first on NETRF.

In the last episode of NETWise, we talked about a moment of transition – the time right after someone receives a diagnosis of NETs and the feelings of grief that can follow. This episode discusses the next part of the journey- how to navigate through the emotions, symptoms, and treatments of NETs while one continues to manage life responsibilities and relationships while living with NETs. This episode addresses survivorship and how one starts to navigate their new normal.

After you’ve listened to the episode, test your NET Knowledge by talking the LACNETS quiz here.

NET expe...

Nos complace ofrecer este podcast NETs 101 en español.

We are pleased to offer this NETs 101 podcast in spanish.

The post N

A NET cancer diagnosis can affect the emotional health of patients, families, and caregivers. In this episode, we’re going to do something a little different. We have spent a lot of time in this series talking about the science of NETs, but a NET cancer journey is not just about biology. The NET journey can be an intensely emotional experience and learning to deal with the emotions can be just as difficult, but as important as treating the disease itself. 

After you’ve listened to the episode, test your NET Knowledge by taking the LACNETS quiz here...

Episode 20 is part two of our deeper understanding into NET research. Advancing NET research is the core of our mission at NETRF, and it’s a crucial need. This episode of NETWise will take a closer look at how scientists do the research that we hope will yield the next generation of effective treatments for NETs. This episode will also look specifically at the vital role NETRF plays in this process and how and why we choose the researchers we support.

After you’ve listened to the episode, test your NET Knowledge by taking the LACNETS quiz here...

Episode 19 is the first of two episodes that will discuss a topic near and dear to us here at NETRF: NET research. Advancing NET research is the core of our mission, and it’s a crucial need, because NETs are extremely complicated cancers and there is still a lot the medical community needs to learn about them. 

How do scientists do research, from beginning to end? And what are some of the challenges that specifically face NET researchers as they work through that process?  Learn why basic research in the laboratory is crucial to discovering new treatments. Clin...

While most neuroendocrine tumors are low-grade and slow growing, there are some that are high-grade and very aggressive.  These high-grade NETs are treated very differently.  In the newest episode of NETWise, we turn the spotlight on high-grade NETs, talk with NET physicians about the treatment challenges, and hear from a patient and caregiver about dealing with the diagnosis. Listen above.

Net experts featured in this podcast:

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 var...

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...

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 lan...

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 patient...

Understanding the Relationship Between NETs and Genetics

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 se...

Caregivers Share the Burden of a NET Diagnosis

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.  

Unique challenges for young people with NETs

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 e...

Did you know that there are more treatments for pancreatic NETs (PNETs) than for other types of NETs?

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 vulnerab...

Did you know that 12% of gastrointestinal (GI) NETs are found in the small bowel?

The small bowel, or the small intestine, is one of the most common places NETs form. If you are living with a small bowel NET, this episode is for you. 

In this episode, you will learn more about the anatomy of the GI system and the different parts and functions of the small bowel. You will also learn more about tumor biology and how small bowel NETs can greatly differ from one another. Finally, this episode details how small bowel NETs g...

Did you know that about 1 in 4 NETs develop in the lungs?

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...