Multiple Endocrine Neoplasia (MEN)

AprilMCaves
AprilMCaves Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
This is my cancer. Dont know many people with it. All i know about MEN is that it is genetic, my father had it. I also know that it affects more men than women. It's rare, like 1 in 100,000 people are diagnosed with it. My specific type is said to affect the parathyroid glands, the pancreas and the pituitary gland. I have had 2 major parathyroid surgeries and am in need of another. I was diagnosed 12 years ago, while i was pregnant with my 3rd child.

Comments

  • kendrarajan
    kendrarajan Member Posts: 17
    #2
    I have it too.
    Glad to finally 'meet' someone with MEN. I have type 2B. I had my thyroid removed, as well as a tumor, back in 2002. A year and a half later I had a second tumor removed, followed by 8 weeks of high dosage radiation. I was 13 at the time. Now I am a not-to-normal 19 year old, and am much more interested in 'my' cancer.
  • dougnatalie
    dougnatalie Member Posts: 2
    #3
    kendrarajan said:

    I have it too.
    Glad to finally 'meet' someone with MEN. I have type 2B. I had my thyroid removed, as well as a tumor, back in 2002. A year and a half later I had a second tumor removed, followed by 8 weeks of high dosage radiation. I was 13 at the time. Now I am a not-to-normal 19 year old, and am much more interested in 'my' cancer.

    My daughter, who is 9, was
    My daughter, who is 9, was diagnosed with MEN 2B last fall. They discovered that she had Medullary Thyroid Cancer and she had to have her thyroid and para-thyroids removed. She is currently in the hospital having some bowel problems that none of the doctors can explain. We have been told it is most likely related to her MEN 2b. We are looking for a doctor that has some experience with MEN 2b patients. Have you found one? Do you know anyone else with MEN 2B that we could ask?
    Thanks for your help!
  • kendrarajan
    kendrarajan Member Posts: 17
    #4
    dougnatalie said:

    My daughter, who is 9, was
    My daughter, who is 9, was diagnosed with MEN 2B last fall. They discovered that she had Medullary Thyroid Cancer and she had to have her thyroid and para-thyroids removed. She is currently in the hospital having some bowel problems that none of the doctors can explain. We have been told it is most likely related to her MEN 2b. We are looking for a doctor that has some experience with MEN 2b patients. Have you found one? Do you know anyone else with MEN 2B that we could ask?
    Thanks for your help!

    I can't believe it!
    Wow. I can't believe I actually found someone who has MEN2B. And a kid at that. I was diagnosed at 11, and had my thyroid and tumor out 2 days after my 12 bday. and one more surgury a year and a half later folowed by radiation, and I am cancer free for 6 years. im 19 and in college now. just reciently I have been getting to know this rare genetic disorder, and because it is so rare, my docs really didn't know much. As for speacialists, unless you count my parents, i don't know of any. my doc's were forced to do the reasearch when i came along. But I am more then happy to get to know you, and if you want i could ask my parents more about who knows what. I didn't have the bowel problems, but other then that i am a textbook case. Mafanoid body type and all. My email is kendrarajan@yahoo.com, i would love to get to know more about your daughter. Stay strong, Have hope, Kendra

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