The Neuroendocrine Cancer Foundation Podcast - Top 10 FAQs with neuroendocrine cancer experts

One of the key aspects of one’s neuroendocrine cancer care is building your medical team, which typically includes a medical oncologist. In this episode, Medical Oncologist Dr. Sandy Kotiah from Mercy Medical Center in Baltimore expounds on the role of a medical oncologist. She sheds light on the first appointment, communication, and care coordination. 

TOP TEN QUESTIONS

1. What is your role in the neuroendocrine cancer world? What is your role with your medical team?
2. What is a medical oncologist? What training is involved? Is a medical oncologist the same thing as a hematologist oncologist? 
   • What’s the difference between a medical oncologist & surgical oncologist (& radiation oncologist)?
3. What is a NET expert and how does someone become a NET expert?
   • When I’m looking for a NET expert, what type of doctor am I looking for? 
   • How do I know if I’m with a “NET expert”? If I call a medical institution, will I automatically get assigned to a “NET expert?” If someone tells me they are a “NET expert,” does that mean that person is a NET expert?
4. What can I expect on my first appointment? What type of information do you try to communicate with your patients during the first appointment? 
   • Newly diagnosed patients often come to their first appointment feeling scared and overwhelmed. They wonder “how long do I have,” worry about how fast the cancer is growing, and are unsure of what to tell their family and friends. How do you address these concerns?
   • What questions should I be asking my oncologist?
5. When/how often should I see my medical oncologist? 
   • Who goes over my scan results with me? When does that happen/How soon after a scan should I expect results? 
   • Who communicates the tumor board discussions?
6. How is care coordinated with other providers on my team within the same institution? 
   • How is care coordinated with other providers from different institutions (i.e. with a local oncologist and a NET expert)?
7. What happens if someone wants a second opinion? How do you feel about second opinions?
   • How do I navigate or work through a situation in which there are differing opinions between doctors? 
8. If I have a question, concern, or symptoms, who do I communicate with and what’s the best way to communicate? 
   • What if we “run out of time” during an appointment? 
   • What if it’s a question or concern I’m shy about communicating?
9. Some people struggle with trust because of past experiences with providers who might have ignored or minimized their symptoms. What advice do you have to help build trust with my doctor? What would you say is my responsibility as a patient and your responsibility as the oncologist? 
10. If there is one thing you would like all people living with neuroendocrine cancer to know, what would it be?

For more information, visit NCF.net. 

When in one’s neuroendocrine cancer journey might a clinical trial be considered? What factors influence treatment decisions, including whether to pursue a clinical trial? Dr. Alexandria Phan, medical oncologist at the Medical College of Wisconsin, offers thoughtful guidance on when and how clinical trials fit into the neuroendocrine cancer journey. This episode helps demystify the clinical trial process and empowers patients to engage in meaningful, proactive conversations with their care teams.

MEET DR. ALEXANDRIA PHAN

Dr. Alexandria Phan is a hematologist and medical oncologist at the Froedtert & Medical College of Wisconsin. Clinical practice, clinical research and education are three pillars important to Dr. Phan’s approach to cancer care. Her areas of focus for clinical research and patient care are neuroendocrine tumors and malignancies of the gastrointestinal system. She has held several leadership positions, including cancer center director, founding program director for Hematology-Oncology fellowship, medical director of clinical research, and national director for GI cancer program.

For more information, visit NCF.net. 

What is Carcinoid Heart Disease (CHD)? Which NET patients develop CHD?  Retired cardiologist and carcinoid heart disease specialist Dr. Jerome Zacks provides an overview of CHD and describes the appropriate screening, diagnosis, and treatment. 

MEET DR. JEROME ZACKS

Dr. Jerome Zacks is a Cardiologist/Carcinoid Heart Disease Specialist; retired since December of 2021; but remain active as Associate Clinical Professor of Medicine at the Icahn Medical School at Mount Sinai in New York City and founding member of the Center for Carcinoid and Neuroendocrine Tumors at the Icahn Medical School at Mount Sinai; founder of the Carcinoid Heart Center; formerly on the Medical Advisory Board of the Carcinoid Cancer Foundation;  currently head the Electrocardiography course for the 4th Year Medical Student elective at the Mt. Sinai Medical Center which has resulted in an international reputation among students seeking Cardiology training in the United States. 

 He has expertise in matters of health care Insurance Carriers' theft of funds from the Medicare program, has studied patterns of abuse in the Medicaid program and has extensive knowledge of pharmaceutical company abusive practices. 

Dr. Zacks continues to devote time to the care of patients with Carcinoid Heart Disease. He has served as a member of the Guidelines Committees of the European Neuroendocrine Tumor Society (ENETS) and of the North American Neuroendocrine Tumor Society (NANETS).   He developed a new approach to compression stockings for patients with leg edema; he was granted a patent for this innovation.  He has authored two national petitions urging Congress to mandate that any health care professional who uses one’s license, in making decisions which influence a patient’s care, be held to the SAME STANDARD OF CARE as the patient’s treating professional. (These two petitions were blocked by Senator Cory Booker.)  In his role as patients’ physician, he has attempted to remove barriers of communication.  His business card includes his personal mobile phone number as well as his email address and website information; He encourages patients to phone for immediate answers to urgent matters.  Along with his wife, Yelena - an RN- they have devoted their professional lives to patients with heart disease from rare Neuroendocrine tumors. They have mentored 5 children, and are now learning from them and their 6 grandchildren have provided the real fuel and excitement for their lives.

For more information, visit https://www.ncf.net/podcast/43

For more information, visit NCF.net. 

In this special episode, medical oncologist and NET expert Dr. Diane Reidy-Lagunes engages in an open and honest discussion on sensitive topics, including sexual health, family planning and end-of-life discussions. She also answers common questions regarding cannabis use with cancer, as well as the relationship between sugar and cancer. Dr. Reidy shares information and insights from her decades of experience as well as from the award-winning “Cancer Straight Talk” podcast from Memorial Sloan Kettering Cancer Center (MSKCC) that she created and hosted, and she relates these topics to NET patients and their loved ones.

TOP TEN QUESTIONS 

1. What is cancer? Is NET cancer?
2. Should I follow a certain diet? Does sugar feed cancer? 
3. Can I exercise if I have metastatic neuroendocrine cancer?
4. What does having neuroendocrine cancer mean for my romantic life? How does it affect dating?
5. What does having neuroendocrine cancer mean for my sexual health?
6. What does having neuroendocrine cancer mean for fertility and family planning? Can I have children?
7. How do I talk to my kids about cancer?
8. How will I know when it’s time for end-of-life discussions?
9. Should I consider cannabis?
10. What advice do you have about improving communication with my doctor?

For more information, visit NCF.net. 

In this special episode, Oregon Health & Sciences University (OHSU) Medical oncologist Dr. Guillaume (Will) Pegna recaps the North American Neuroendocrine Tumor Society (NANETS) 2024 Multidisciplinary NET Medical Symposium. He shares the latest developments in NET research and medical advances from the conference and how they matter to the NET patient community.

MEET DR. GUILLAUME PEGNA

Dr. Pegna is a medical oncologist specializing in caring for adults with neuroendocrine tumors (NETs). He is additionally interested and experienced in the management of rare tumors, including pheochromocytomas, paragangliomas and adrenocortical carcinomas, as well as other gastrointestinal cancers.

Dr. Pegna is actively involved with clinical trials and cancer research to improve survival and quality of life for cancer patients and to better understand the biology of these diseases. He specializes in the use of chemotherapy, immunotherapy and multidisciplinary approaches to cancer care. Dr. Pegna finds it rewarding to help patients understand their disease, providing treatment options based on each individual patient and supporting them through their treatment journeys.

For more information, visit LACNETS.org/podcast/41. 

For more information, visit NCF.net. 

ABOUT THIS EPISODE

What is radiation oncology, and how is it used for neuroendocrine cancer? UCSF radiation oncologists Dr. Will Chen and Dr. Alexandra Hotca-Cho describe external radiation therapy (SBRT) and how, when, and where it may be used for select patients with neuroendocrine cancers. They address common concerns about the planning process, safety concerns, and treatment sequencing.

TOP TEN QUESTIONS ABOUT EXTERNAL RADIATION THERAPY FOR NEUROENDOCRINE CANCERS:

1. What is radiation oncology? How does it work? How is it different from other types of radiation?
2. What are the types of radiation therapies used for neuroendocrine cancer? 
3. Which neuroendocrine cancers are they used for, and when are they used? How do you decide who is a good candidate and if it will be effective?

• Where in the body can SBRT be used? (bone, liver, pancreas, rectal?) Where can it not be used in the body, and when is SBRT NOT used?
• Is there a number or size limit of the tumor(s)?

4. For Bone: How do NETs affect the bones? Are they “on” or “in” the bone, and does the tumor tend to weaken it?

• If given to the bone, does SBRT weaken the bone? What are the chances of fracture with radiation to the bone? Does it matter which area of the bone/body is treated? What other factors influence fracture risk? (age, dose, number of treatments)? Should patients have a bone density scan before SBRT?
• If bone lesions are causing pain, how soon after treatment might a patient expect to have pain alleviated?
• How common is increased pain after treatment to the bone? What causes that?

5. Safety: 

• How much radiation is given with these procedures? Is there a concern about radiation safety following the procedures? (Do patients need to avoid others in the hours or days after the treatment?)
• Is there a lifetime limit to the amount of radiation one can receive, especially considering surveillance CT & PET scans?
• How often can these procedures be repeated? 
• Does it damage other tissues or organs? How common are secondary cancers? What types and how treatable are they?
• Is there a risk with fertility?
• What other risks are there?

6. How do these therapies compare to PRRT or radioembolization in terms of safety? If someone has had PRRT or radioembolization, can they also receive radiation therapy to the liver or bones? Is there increased risks if someone has had PRRT, radioembolization or CAPTEM or alkylating agents? 
7. Is there an optimal sequence for treatments? 
8. What is SBRT like for patients? What is the planning and preparation process? How do you determine how many treatments and what dose to give?
9. What does the patient experience during and after the procedure? Does it hurt? What are the side effects? How much time do I need to take off of work? 
10. How effective is SBRT in terms of managing symptoms? How effective is SBRT in controlling or destroying the tumor?  How do you know if the treatment “worked”?

Bonus: What is the future of radiation therapy in neuroendocrine cancer treatment?

For more information, visit NCF.net. 

ABOUT THIS EPISODE

In this 2-part series, Dr. Osman Ahmed from the University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this second episode, he details the embolization techniques, including bland embolization (TAE), chemoembolization (TACE), and radioembolization (TARE, SIRT, y90). He discusses decision-making, sequencing, and follow-up after these procedures.

TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY PART 2:

1. What do patients need to know about bland embolization (TAE)? 
a. What are the possible side effects? 
b. How do the size of beads play a role? 
c. When is this recommended? 
d. Do you always do both sides of the liver? If so, what is the timing and why? 
e. What is the recovery like? What is post-embolization syndrome?

2. What do patients need to know about chemoembolization (TACE)?
a. What drug is used & does this go through the whole body? 
b. What is the recovery like? What are the possible side effects?

3. What do patients need to know about radioembolization (TARE, SIRT, y90)? 
a. In the era of PRRT, is there a concern with using y90 or radioembolization? How is the approach and technique used with radioembolization different than how it was done in the past? Is there a total lifetime limit of radiation?
b. What is the recovery like? What are the possible side effects?

4. Is there a limit to how much LDT one can do? Can they be repeated?
5. How does one decide between the various types of liver-directed therapies?
6. Is there a sequencing to treatments?
7. Are there certain treatments that make you ineligible for other treatments? [PRRT, chemo, y90 etc] 
8. If someone has had surgery such as a Whipple or surgery or procedures involving the bile duct, such as a stent in the bile duct or surgical removal of part of the bile duct, how does this weigh into the decision-making process for LDT?
9. How do you determine if the treatment “worked?” What is the follow-up like? What scan might you do and in what timing?
10. What do you see as the future of liver-directed therapy in neuroendocrine cancer treatment? 

MEET DR. OSMAN AHMED

Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage.

In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology.

Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology.

For more information, visit https://www.lacnets.org/lacnets-podcast

For more information, visit NCF.net. 

ABOUT THIS EPISODE

In this 2-part series, Dr. Osman Ahmed from University of Chicago covers liver-directed therapies for neuroendocrine neoplasms (NENs or neuroendocrine cancer). In this first episode, he outlines the types of liver-directed therapies and elaborates on ablative techniques including the newest technique, histotripsy. Listen to a frank discussion of how histotripsy works, when it might be used, and what its current limitations are.

TOP TEN QUESTIONS ABOUT LIVER-DIRECTED THERAPY INCLUDING HISTOTRIPSY:

1. What is liver-directed therapy? How does it work? Is this considered “surgery”? What is a surgery and what is a “procedure?”
2. What are the types of liver-directed therapies used for neuroendocrine cancer? 
3. Which neuroendocrine cancers are they used for and when are they used? How do you decide who is a good candidate and if it will be effective?
4. When are liver-directed therapies NOT used? Can someone who has had a Whipple undergo liver-directed therapy?
5. What is the ablation zone? What is a heat sink effect?
6. What is histotripsy? How does it work?
7. When is histotripsy used (tumor grade, type of tumor - PNET/lung NET, size, number of tumor, location)? Can they be used for liver tumors even if there are tumors outside the liver?
8. What are the limitations to histotripsy? 
9. What happens to the liver tissue after ablation? What are the results or success rates of patients being treated? Can histotripsy “cure” NET? 
10. How do you decide between the various types of liver-directed therapies? 

MEET DR. OSMAN AHMED:

Osman Ahmed, MD, is an expert vascular and interventional radiologist who diagnoses and treats a wide range of conditions. Using image-guided technology and small, sophisticated instruments, Dr. Ahmed performs minimally invasive procedures for acute and chronic deep vein thrombosis, benign prostatic hyperplasia, peripheral vascular disease, liver/bone/lung/kidney cancer, spinal fractures, uterine fibroids and more. He also implants inferior vena cava (IVC) filters, which prevent a blood clot from traveling around the body or creating a blockage.

In addition to his clinical expertise, Dr. Ahmed researches novel treatment options that improve outcomes for patients. His research on liver cancer, IVC filters and venous diseases has been published in several high-impact, peer-reviewed journals, including the Journal of Vascular and Interventional Radiology, Radiology, Chest, Journal of American College of Radiology, and Journal of Surgical Oncology.

Dr. Ahmed also believes in the importance of educating medical students, residents, fellowships and peers in order to enhance health care across the world. He has been invited to speak at a number of symposiums, practicums and national/international meetings about the newest advancements in interventional radiology.

Visit lacnets.org/podcast/38 for the podcast, transcript, and resources. 

For more information, visit NCF.net. 

What is supportive care or supportive oncology? What is cancer-related distress? How might NET patients benefit from supportive care? Yale oncologist Dr. Maryam Lustberg suggests strategies to manage cancer-related fatigue, diarrhea, nausea, mouth sores, peripheral neuropathy, distress, anxiety, and anxiety. She also addresses considerations for fertility and sexual health.

MEET DR. MARYAM LUSTBERG

Dr. Maryam Lustberg is an American breast oncologist. She is the Director of The Breast Center at Smilow Cancer Hospital and Chief of

Breast Medical Oncology at Yale Cancer Center. Dr. Lustberg previously served as the Medical Director of Cancer Supportive Care Services at

Ohio State’s Comprehensive Cancer Center. She is the Immediate Past President of the Multinational Association of Supportive Care in Cancer. She is also an Associate Editor for the Journal of Cancer Survivorship.

TOP TEN QUESTIONS ABOUT SUPPORTIVE CARE: 

1. What is supportive care in cancer (or supportive oncology)? What is survivorship? How do these concepts apply to the NET community?
2. What is the 1st step for patients to get supportive care?
3. What are the most common treated-related adverse events or side effects? What are risk factors for them? (Will all patients experience all potential side effects?)
4. What causes cancer-related fatigue (CRF)? What are some strategies to manage cancer-related fatigue?
5. What are some strategies to manage diarrhea?
6. What are some strategies to manage nausea?
7. What are some strategies to manage mouth sores?
8. What is peripheral neuropathy? When do patients experience it and what can be done to prevent it?
9. What should patients understand about sexual health and fertility?
10. How can psychosocial needs such as distress, anxiety, and depression be addressed and supported?

For more information, please visit https://www.lacnets.org/podcast/37. 

For more information, visit NCF.net. 

ABOUT THIS EPISODE

What is immunotherapy? How effective are they for neuroendocrine neoplasms (NENs)? Dr. Jennifer Eads from Penn Medicine answers common questions about immunotherapy. She discusses the latest in CAR T therapy, DLL3, and vaccine therapy for NENs. 

TOP TEN QUESTIONS ABOUT IMMUNOTHERAPY FOR NENS:

1. What is immunotherapy? How does it work? 
2. How does immunotherapy differ from other treatments? 
3. When is immunotherapy used? Which neuroendocrine cancers are they used for? 
4. What are the various immunotherapy drugs used for neuroendocrine cancer and how do they work? What are immune checkpoint inhibitors?
5. What is CAR-T therapy?
6. What is DLL3?
7. What is vaccine therapy?
8. What side effects might someone have when taking immunotherapy? How does it make me look (will I lose my hair)? How will it make me feel (will I be able to work)? Does immunotherapy cause someone to be immunocompromised? What monitoring needs to be done while on immunotherapy?
9. How do you decide when to use immunotherapy, which to use, and for what patient?
10. What do you see as the future of immunotherapy in neuroendocrine cancer treatment? 

MEET DR. JENNIFER EADS, MD

Dr. Jennifer Eads is an associate professor of medicine at the University of Pennsylvania, Abramson Cancer Center where she is a gastrointestinal medical oncologist focusing on the treatment of and research in patients with neuroendocrine tumors and gastroesophageal cancers. She is the Physician Lead for GI Clinical Research, overseeing the Penn GI clinical research portfolio. She is the Penn institutional principal investigator for the Eastern Cooperative Oncology Group (ECOG-ACRIN) and serves as the Director of the National Clinical Trials Network (NCTN) for the Abramson Cancer Center. She has served as principal investigator for multiple phase I/II/III clinical trials, including as the national study chair for multiple cooperative group trials. She has served on the National Clinical Cancer Network (NCCN) neuroendocrine tumors guidelines committee, is a former member of the North American Neuroendocrine Tumor Society (NANETS) Board of Directors and is currently on the Board of Scientific Advisors for the Neuroendocrine Tumor Research Foundation (NETRF). In 2022, she was named as the ECOG-ACRIN Young Investigator of the Year.

For more information, visit lacnets.org/lacnets-podcast/36

For more information, visit NCF.net.