Caring for Carcinoid Foundation

The Caring for Carcinoid Foundation (CFCF) offers Expert Interviews to provide the carcinoid / NET community with cutting-edge knowledge directly from leading experts.

Expert Interviews cover the most important topics and questions requested by the carcinoid / NET community. Therefore, Expert Interviews provide a unique opportunity to hear directly from leading experts about the issues that concern you.

CFCF is deeply grateful to all the leading experts for sharing their insights and answering follow-up questions from the carcinoid / NET community.

We are fighting together as one team!

Listen to Expert Interviews
Expert Interviews
Contact Us

Listen to Expert Interviews

Just click on an expert's name in the audio player below, then wait several seconds for the recording to begin.

No separate software is required.

This text will be replaced by the flash music player.

Expert Profile

Profession: Cardiologist
Years of practice: 14
Total carcinoid / NET patients: >300
Biography

Questions

What is Carcinoid Heart Disease (CHD)?
Are there any obvious signs of CHD?
How should patients be monitored for CHD?
When do you recommend that patients see a cardiologist?
Does CHD only result from metastatic carcinoid involving the liver?
Is there a difference in CHD risk among carcinoid patients?
Do NET patients have risk for heart involvement?
How many years does it take for a carcinoid patients to have heart involvement?
When do you recommend heart surgery?
Does the Mayo Clinic have a team of doctors to work with carcinoid patients?
How is the heart surgery performed?
Can carcinoid patients keep their heart healthy as long as possible?
What research could lead to better treatment of patients?

Expert Interview

Interviewer: Nancy O'Hagan
Topic: Carcinoid Heart Disease
Listen to Expert Interview

Counseling

Dr. Paula Rauch - Massachusetts General Hospital

Dr. Paula Rauch

Expert Profile

Profession: Psychiatrist
Practice: Director, Parenting at a Challenging Time Program (PACT)
Author: "Raising An Emotionally Healthy Child When A Parent is Sick"
PACT Program: Lessons Learned - Parenting at a Challenging Time (PACT)
Biography

Questions

What is your advice to parents for when and how to tell their children about cancer?
In telling their children, what factors should be taken into account?
What comprises a family support system?
Many hospitals now allow care pages and blogs - do you recommend them?
How do parents reestablish normal state for their children?
What do you think about support groups for children?
What are the differences for adolescents?
For adolescent girls, would you recommend recording their thoughts in a diary or blog?
Do you suggest a support group for children after a parent has passed away?
How do you recommend that clinicians help the children of their cancer patients?
Carcinoid / NET patients may live for many years after diagnosis - what do you recommend to families in that situation?
How should parents inform their children about the possibility of death?
What are the warning signs that children need urgent help because they are not coping well?
After a parent dies, how should a family come together to help the children?

Expert Interview

Interviewer: Nancy O'Hagan
Topic: Parenting with Cancer
Listen to Expert Interview

Financial Assistance

Krista Zodet - HealthWell Foundation

Expert Profile

Krista Zodet - HealthWell Foundation

About HealthWell Foundation

The HealthWell Foundation is a 501(c)(3) non-profit, charitable organization that helps individuals afford prescription medications they are taking for specific illnesses. The Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including:
- Prescription drug coinsurance, copayments, and deductibles
- Health insurance premiums
- Other selected out-of-pocket health care costs

Visit website

Expert Interview

Interviewer: Nancy O'Hagan
Topic: Financial assistance for carcinoid / NET patients
Listen to Expert Interview

Gastroenterology

Dr. David Metz - University of Pennsylvania

Dr. David Metz

Expert Profile

Profession: Gastroenterologist
Biography

Expert Interview

Interviewer: Nancy O'Hagan
Topic: Diagnosing and treating carcinoid tumors
Listen to Expert Interview

Dr. Joseph Pisegna - UCLA Medical Center

Dr. Joseph Pisegna

Expert Profile

Profession: Gastroenterologist
Biography

Expert Interview

Interviewer: Lance Miller
Topic: Carcinoid / NET
Listen to Expert Interview

NIH

Dr. Stephen Marx - National Institute of Diabetes and Digestive and Kidney Diseases

Dr. Stephen Marx

Expert Profile

Chief, Metabolic Diseases Branch
Biography

Notes from Dr. Stephen Marx

Tumor screening is used in two very different settings and with two levels of intensity:

First, as a screen to recognize who is an MEN1 carrier.
- This use focuses on the most efficient markers, such as calcium, prolactin, and gastrin. Once it diagnoses an MEN1 carrier, then that patient should receive periodic screening by method 2. If testing is negative (�normal�), it does not exclude the carrier state and the testing needs to be repeated at intervals such as every 1-2 years. This carrier screening is an alternate to DNA-testing for the same purpose, excepting that DNA-testing does not need to be repeated after one normal result. Typical candidates for carrier screening are close relatives of a patient with MEN1 (MEN1 is defined as tumor in two of three following: parathyroid, duodeno-pancreatic, and pituitary), whether or not other affected family members have been identified. Patients with only one tumor type (such as a carcinoid) generally do not need carrier screening, unless the tumor is a gastrinoma.
Second, for periodic monitoring for tumor emergence in a known MEN1 carrier.
- However the MEN1 carrier was diagnosed, periodic monitoring for tumors should be done and with a protocol that is cost-effective. Tumor monitoring uses more complex methods (including imaging) than carrier detection to help recognize subtle, perhaps even rare, but sometimes treatable tumors (such as foregut carcinoid).

Expert Interview

Interviewer: Nancy O'Hagan
Topic: Genetic bases of carcinoid / NET
Listen to Expert Interview

Pharmaceuticals

Dr. Gary Jacob - Callisto Pharmaceuticals

Expert Profile

Chief Executive Officer and Chief Scientific Officer, Callisto Pharmaceuticals
Biography

About Callisto Pharmaceuticals

Expert Interview

Interviewer: Nancy O'Hagan
Topic: Atriprimod
Listen to Expert Interview

Surgery

Dr. Michael Choti - Johns Hopkins

Dr. Michael Choti

Expert Profile

Profession: Surgeon
Years of practice: 15
Total carcinoid / NET patients: Several hundred
Biography

Questions

What are the various approaches to performing surgery on carcinoid / NET patients?
What are the different theories behind hepatic resection?
What are the risks and benefits of these surgeries?
How do you recommend carcinoid / NET patients prepare for surgery?
How do you recommend carcinoid / NET patients handle their post-operative care?
What research could lead to better treatment for carcinoid / NET patients?