EPISODE 43: CARCINOID HEART SYNDROME

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ABOUT THIS EPISODE

What is Carcinoid Heart Disease (CHD)? Which NET patients develop CHD?  Retired cardiologist and carcinoid heart disease specialist Dr. Jerome Zacks provides an overview on 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.

TOP TEN QUESTIONS ABOUT EXTERNAL RADIATION THERAPY:

1. What is carcinoid heart disease (CHD) and what causes it to happen? 

2. Is CHD related to carcinoid symptoms? If my symptoms are uncontrolled, does this mean I might develop CHD?

3. How concerned should I be about developing carcinoid heart disease? Which NET patients “get” CHD?  Is it “inevitable”? 

   • Is it more common with NETs of the small bowel? 

   • Do those with NETs in the pancreas or other types of NETs ever get carcinoid heart disease?

4. What are some of the signs and symptoms of carcinoid heart disease?

5. How is it diagnosed? How does someone know if they have carcinoid heart disease? 

   • What is a heart murmur and how is it related to carcinoid heart disease?

   • What is the appropriate testing for CHD? Are there blood tests that can or should be done? 

6. If someone is found to have neuroendocrine cancer (neuroendocrine tumor or NET) and CHD, what is the treatment approach? Which do you treat first and why?

7. What is the treatment for CHD and how is this determined? 

   1. If valve replacement is done, how many valves and which valves might be replaced?  

   2. What type of valves are recommended? How is this done?

8. What screening should be done for CHD and how often should someone get screened?

9. How can I prevent CHD?

10. What type of doctor(s) treat CHD? How do I know if I’m with a specialist? 

Bonus: What do you see as the future of CHD management and treatment?

RESOURCES

WATCH

READ

CHD Guidelines & Articles:

• ENETS guidance paper for carcinoid syndrome and carcinoid heart disease 

• Davar et al (2017) Diagnosing and Managing Carcinoid Heart Disease in Patients With Neuroendocrine Tumors: An Expert Statement. J Am Coll Cardiol.; 69 (10) 1288–1304

• Jin et al (2021) Carcinoid Heart Disease: Pathophysiology, Pathology, Clinical Manifestations, and Management. Cardiology;146:65–73

• Ram et al (2019) Carcinoid Heart Disease:Review of Current Knowledge. Texas Heart Institute Journal February 2019, Vol. 46, No. 1

Additional Resources:

• Xermelo or Telotristat Ethyl

• Interscience Institute provides NET Diagnostic Testing including pancreastatin and serotonin.

DISCLAIMER

The Neuroendocrine Cancer Foundation Podcasts are created for educational purposes only and do not substitute for medical advice. The views shared in this Podcast are the personal opinions of the experts and do not necessarily reflect the views of the Neuroendocrine Cancer Foundation. Please contact your medical team with questions or concerns about your individual care or treatment.

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