Phone: 865.238.5842
Toll Free: 866.612.8579
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MEN Seminars

MEN Seminars Part of our educational outreach is hosting free MEN Seminars. .

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Rare Disease Connection RareConnect is a new online community for people with a rare disease like Multiple Endocrine Neoplasia.

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MEN Type 1

What is Multiple Endocrine Neoplasia Type 1? What are symptoms and associated issues? Click on the button below to find out.

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MEN Type 2

What is Multiple Endocrine Neoplasia Type 2? How is it different from MEN Type 1? Click on the button below to find out.

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Whipple Procedure

We're adding a section to our site devoted completely to the Whipple Procedure, so stay tuned and check back for more info soon!

Answers from Dr. Mark Lewis

Q: Is the term cancer synonymous with malignancy or with metastasis?  I understand the difference between the definitions of malignancy and metastases is, but how significant is the difference?  A: Here’s where the confusion lies. You can only tell if a pancreatic neuroendocrine tumor is malignant AFTER it has spread. There is no way to […] (more ...)
Q: My husband was diagnosed with MEN-1 about 3 years ago at the age of 36 and has since had a parathyroidectomy; he takes cabergoline for a pituitary tumor; and he yearly gets his pancreas checked. About three weeks ago we found out the results of my 2.5 year old son’s test and he did […] (more ...)
Q: What are the preferred methods for removal of a pituitary tumor? Does size of a tumor dictate the preferred method? A: Basically, the approach is almost always through the nose and then through the sphenoidal sinus. You might recall that there is a paper-thin wall of bone to break to access the sella turcica […] (more ...)
Q: Could you explain the connection of MEN 1 and acromegaly?  What testing would be performed and what are treatment options?   A: Acromegaly is a growth-hormone producing tumor of pituitary in an adult. In a child, the same process causes gigantism. These tumors are usually sporadic. But they can be hereditary especially as isolated […] (more ...)
Q: I have a suspected case of MEN Type 1 and have been having a reoccurring URQ pain every month or two that lasts 24-48 hours with diarrhea and vomiting. During one episode, I had an ultrasound done and everything appeared normal. They did discover I have what appears to be two liver hemangioma. My doctor wants […] (more ...)
Q: I was diagnosed with MEN Type 1. The gallium 68 scan showed my pancreas lit up with some consolidation and the tail. My medical doctor said he’d seen this with MEN Type 1, but said that there was no solid tumor showing. Should I pursue diagnosis of the pancreas. For instance an endoscopic US?  […] (more ...)
Q: If I have gastrinomas, does that automatically mean I have ZES? A: Some doctors think that ZES is a clinical diagnosis based on the presence of ulcers and acid over-secretion that’s refractory to medications like the PPIs, e.g. Nexium. However, it’s technically correct to say that an MEN1 patient with gastrinomas has ZES. (more ...)
Q: My sister was diagnosed with MEN 1 which was confirmed by genetic testing so I was tested. My result was positive for a heterozygous “novel P373A missense mutation,” which Mayo interpreted as disease causing since P373L and P373S mutations have associated MEN1. All I can find is a colon CA association. I am 58 […] (more ...)
Q: Why does my physician order 24-hour urine testing for 5HIAA?  A: With regard to 5HIAA, it stands for 5-hydroxyindoleacetic acid, and represents a metabolite of serotonin (also known as hydroxytryptamine, or 5HT), not serotonin itself. Normally 1 to 3 percent of dietary tryptophan is metabolized to serotonin. However, as much as 50 percent of […] (more ...)
Q: Are renal cysts part of MEN Type 1? A: To the best of my knowledge renal cysts are not associated with MEN1. There is a related genetic syndrome called hyperparathyroidism – jaw tumor syndrome – in which renal cysts are more common (especially in patients of Dutch descent), but I do not believe there […] (more ...)


Do you or someone you know have Multiple Endocrine Neoplasia (MEN)? Then you are in the right place. This site is designed to provide support and education to individuals and families living with MEN Type 1, 2A, 2B and subsets of MEN.

Our goal is educate people about MEN through public awareness, advocacy and raising money for research and professional advances in treatment.

Are you a physician? Do you have patients living with MEN? Our site provides a resource for your patients and their families to learn more about living with MEN. We also provide a network for physicians and articles about the latest in MEN.

Our vision is to provide the first American MEN Support Center in the United States to keep MEN families and health professionals informed of the key issues associated with managing the disease.

Please take your time and read through the articles on this site. We encourage feedback and comments, so please feel free to let us know what you think. If you have any questions or would like to get involved with our efforts, please contact us.

Medical Dictionary

Need help figuring out a word or phrase you see on this site? Click here to access the National Institute of Health Online Medical Dictionary.

Ask Dr. Lewis

Ask the Doctor Dr. Mark Lewis has joined our board and is available to answer your questions about MEN.

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Materials on this website are not a substitute for medical care, consultations, or advice from certified medical professionals. All content is for personal and informational purposes only. The content of this site is general and may not apply to all diagnoses of Multiple Endocrine Neoplasia. We encourage all persons with Multiple Endocrine Neoplasia and related diseases to seek professional advice for specific questions and concerns.
We have made every effort to insure that content is accurate, correct and current, and are not liable for any unintentional errors. Links to other websites have been carefully chosen, but do not imply endorsement and we are not responsible or liable for their information and contents.
Under no circumstances, shall the authors and publishers be liable under any theory of recovery for any damages arising out of or in any manner connected with the use of information, services, or documents from the site.