I must say that I was very surprised to find a site that has to deal with MEN’s.  I found out about Medullary cancer in 1988, when I was 22 and it had already spread to the surrounding area.  Had three neck surgeries the first year and a number of others for a total of 10 to this point in time.  I don’t have many glands left!   They thought that I had sporadic Medullary until 2003.  This is when I found out about Pheo’s and MEN 2 A.  Who knew!  I thought I was just doing a good job at losing weight.

Then my heart started feeling funny.   After numerous trips to the doctors with no luck.   I was starting to worry but I just kept going back as I knew there was something wrong.    A few of them wanted to put me on antidepressant meds as they thought I was having anxiety issues.  Finally someone checked my adrenaline levels.   My adrenaline levels were very high and they wanted me to stop doing everything driving, school etc.  I had two weeks left to school and there was no way I was stopping at this point.  As much as they did not want me to, I did finish school and when I was done, I was in the hospital within 48 hours getting my right adrenal gland taken out.

Now to the good part

I am at a crossroads and truely don’t know what to do.  This is the first time in almost 24 years that I have not made a nano second decision about surgery.  I have another tumor on my left adrenal gland as well as a few in my liver and more in my neck again.    One doctor seems to think that the adrenal tumor may just be Medullary and that I can wait a bit before having it out.     A second doctor feels that it is a Pheo.    I was suppose to have the adrenal gland out Nov 8th in Boston but I canceled it.   I started reading about Addison’s Disease.    This just does not sound like an easy road to walk down.    I was looking or hoping for some feedback about what it is like to have to deal with Addison’s.  I am suppose to go back for another MRI in Febuary.   Some how I need to come to terms with this and to be able to touch base with someone that has already walked down this road.  It would be a great help to me.

I feel that I am starting to climb down the other side of the hill so to say.  Maybe I am just scared.

Many Thanks,

Kate from NH

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Linda Hageman, RN

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The Hageman Foundation was formed to provide education and support to patients, their families and medical personnel regarding Multiple Endocrine Neoplasia 1 (MEN1),  MEN 2a and MEN 2b.The founder Linda Hageman, RN, has been a Registered Nurse for more than 30 years and she was diagnosed with Multiple Endocrine Neoplasia (MEN1) in 1989.

Both her mother and maternal uncle were diagnosed with MEN ten years earlier.  Linda has had adenoma involvement with all three of the endocrine glands.  The 3 P’s associated with MEN 1 are the Parathyroids, Pituitary Gland and the Pancreas.  Linda has had multiple parathyroid surgeries, a Thompson Procedure (removal of the tail of the Pancreas and the Spleen.  Two years later she  had to have a Pancreatoduodenectomy, which is the excision of  the rest of her Pancreas, with the duodenum,  (part of the intestine and stomach removed), and the excision of her gall bladder  As a result Linda now has Pancreatogenic Diabetes (Brittle Diabetes) and is not able to digest food without digestive enzymes.

Linda’s passion is to help others with MEN through education and support.  The Hageman Foundation offers seminars, guest speakers, and literature to patients, families, and medical professionals.  The Hageman Foundation is a nonprofit corporation and classified as a 501c (3) charitable organization by the IRS.

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The Pituitary Gland controls growth, thyroid secretion, prolactin and other key hormones.  The Parathyroid Glands control the body’s level of calcium in the urine, blood and bones.  The Pancreas secretes hormones that control blood glucose levels and secretes digestive enzymes.  Click here to read more. 

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 The Pheochromocytomas grow on the Adrenal Glands.  Some of the symptoms include increased in blood pressure and heart rate, profound sweating, upper abdominal pain, extreme anxiety and sudden severe headaches. 

Multiple Endocrine Neoplasia Type 2b is usually found in early childhood.  Some of the symptoms are tumors on the lips, tongue and in the digestive tract, and Familial Medullary Thyroid Cancer (FMTC).  Pheochromocytomas, as described in MEN 2a are sometimes found.

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