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Expert Interviews

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
  • Cardiology
    • Dr. Heidi Connolly - Mayo Clinic
  • Counseling
    • Dr. Paula Rauch - Massachusetts General Hospital
  • Financial Assistance
    • Krista Zodet - HealthWell Foundation
  • Gastroenterology
    • Dr. David Metz - University of Pennsylvania
    • Dr. Joseph Pisegna - UCLA Medical Center
  • NIH
    • Dr. Stephen Marx - National Institute of Diabetes and Digestive and Kidney Diseases
  • Nutrition
    • Suzanne Dixon MPH, MS, RD - Cancer4Cancer.com
  • Pharmaceuticals
    • Dr. Gary Jacob - Callisto Pharmaceuticals
  • Surgery
    • Dr. Michael Choti - Johns Hopkins
  • Wellness
    • Carol Lundin - Reach Beyond Healing Programs
• Contact Us
  • Recommend an Expert
  • Suggest Topics and Questions
  • Report a Technical Difficulty
     

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.

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Expert Interviews

Cardiology

Dr. Heidi Connolly - Mayo Clinic

Dr. Heidi Connolly

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

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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

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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

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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

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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

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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

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Nutrition

Suzanne Dixon MPH, MS, RD - Caring4Cancer.com

Expert Profile

• Registered Dietitian, Epidemiologist
• Vice President, Nutrition, P4 Healthcare and Caring4Cancer.com
• Website

Expert Interview

• Interviewer:  Margaret Liao
• Topic:  Carcinoid / NET Nutrition
• Listen to Expert Interview
• Download Transcript

Questions

• Time: 00.20 – Question 1: First, can you give us a little background about what you do?
• Time 01.00 – Question 2: Given your extended experience and knowledge about cancer nutrition what are your general guidelines for nutrition and health for cancer patients?
• Time: 04.25 – Question 3: When cancer patients receive chemo-therapy they have unique concerns such as mouth sores or body sores etc. What role does nutrition play in preventing or reducing the pain from such sores? Why do such sores arise?
• Time: 06.40 – Question 4: What are the dietary guidelines for Carcinoid and Neuroendocrine Tumor patients? How do the guidelines change if the patient is or is not experiencing Carcinoid Syndrome.
• Time: 11.27 – Question 5: Are there foods that will reduce or stop diarrhea? What are your thoughts on nutmeg?
• Time: 13.10 – Question 6: Going back to talking about dietary guidelines - do you believe that dietary guidelines change for Carcinoid cancer survivors and are there diet recommendations for Carcinoid prevention?
• Time: 16.23 – Question 7: What foods should Carcinoid patients avoid and what foods should patients be sure to eat on a daily basis, like a monthly basis, etc?
• Time: 20.04 – Question 8: Can you give us a summary about what are some eating tips, some general eating tips, for Carcinoid patients?
• Time: 25.03 – Question 9: Many Carcinoid patients complain about nausea and vomiting. What can they eat to reduce these symptoms?
• Time: 30.24 – Question 10: For patients undergoing Carcinoid treatment – what are general eating tips for them?
• Time: 36.33 – Question 11: For patients undergoing Sandostatin treatment – what are general eating tips for them?
• Time: 38.40 – Question 12: For patients undergoing radio-frequency ablation treatment what are general eating tips for them?
• Time: 40.23 – Question 13: For patients undergoing selective internal radiation therapy what are general eating tips for them?
• Time: 40.42 – Question 14: What do you recommend for patients that underwent surgery, what are the tips for before and after surgery and in particular do you have any suggestions to relieve constipation?
• Time: 44.58 – Question 15: Is there a minimal amount of tryptophan that patients should have in their bodies? What are the negative repercussions if someone doesn't have that level of tryptophan?
• Time: 48.52 – Question 16: Talking about supplements – what kinds of nutritional supplements that you recommend? Multi-vitamins or Omega Three supplements or Lysine?
• Time: 56.29 – Question 17: What is Milk Thistle? Does it have a positive effect on liver and with patients who have extensive liver metastasis do you recommend it?

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