MEN AND YOUR PANCREAS
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?
A.Answer from Dr. Mark Lewis: Yes, the imaging resolution of a gallium scan is really designed to survey the whole body and identify areas for follow-up imaging. I would not be surprised to see uptake in the pancreas of an MEN 1 patient.
When I was at the Mayo Clinic, we validated endoscopic ultrasound (EUS) as having the highest correlation between imaging and operative findings in MEN 1 patients. The other advantage to EUS is that, unlike CT or MRI, the gastroenterologist (by virtue of having advanced the scope/ultrasound into the intestine adjacent to the pancreas) can even biopsy lesions they think look suspicious at the time of EUS to prove the underlying diagnosis.
MY SON HAS MEN TYPE 1
Q.My husband was diagnosed with MEN Type 1 about 3 years ago at the age of 36 and has since had a parathyroidectomy. He takes cabergoline for a pituitary tumor and gets his pancreas checked each year. About three weeks ago, we found out my two-and-a-half-year-old son’s test was positive for MEN Type 1. It has been very difficult for me to find resources and learn more about children with MEN. I have reached out to many resources and just wanted to know your advice on learning that such a young child has this syndrome. The doctor we met with so far has had us do blood work and at this point said we should check back in yearly to get tests done. Please advise if you have a different approach. Any advice is greatly appreciated. I am just trying to ease my mind at this point and make sure I am doing the right thing!
A.Answer from Dr. Mark Lewis: Boy can I empathize with you on this. My own three-year-old son is gene-positive too and he is followed also with annual bloodwork for now. The jury is still out on scanning at this age, but I would personally err toward not scanning unless absolutely necessary to minimize the radiation burden during youth. Sounds like you are already in great hands!
ADDRESSING ELUSIVE INSULINOMA
Q.How should doctors address an elusive insulinoma and associated symptoms?
A.Answer from Dr. Mark Lewis: Don’t lose hope! First of all, while the symptoms of insulinoma are troublesome (likely an understatement, I’m sure), the biology of insulinomas is the most benign of all the pancreatic neuroendocrine tumors. Put another way, insulinomas are the least likely to become malignant and incurable. It sounds like an Octreoscan might be helpful at this point to identify any residual disease. Also, whomever is prescribing you the diazoxide deserves to know that you think it is masking persistent symptoms of excessive insulin — a basic rule of good medicine is that, if you prescribe a medicine to a patient, you should help them mediate the side effects/consequences of that pill.
MEDICINAL MARIJUANA AND MEN SYMPTOMS
Q.This may sound weird or something and no, I am not a “pot head,” but would medical marijuana benefit someone with sever MEN symptoms with the pain, nausea, lack of appetite and anxiety issues?
A.Answer from Dr. Mark Lewis: I believe that cannabinoids can alleviate nausea and improve appetite in some cancer patients. However, since marijuana remains illegal in the majority of states the closest most patients can come is Marinol (legal in every state, to the best of my knowledge; available by prescription only).
MEN TYPE 1, HIGH PHOSPHOROUS AND GI SYMPTOMS
Q.I have MEN Type 1 and had all four of my parathyroids removed. Now, I have hypoparathyroidism and a small pituitary adenoma. I get a reoccurrence of an urq piano that goes from my stomach, under the ribs to my back under my shoulder blade. It lasts for a day or two with vomiting and diarrhea and is always accompanied by burps with a sulfur smell (& I don’t eat eggs). I’ve had ultrasounds, a CT scan, and even an endoscopy. The doctors keep saying everything looks fine. Of course that’s what they said about my blood work before they found my parathyroid tumors. I know something isn’t normal. Every time it happens, my calcium levels crash and I end up in the hospital with tetany. Since the doctors here don’t understand MEN-1 is there a direction I can point them in? My blood work looks good; my ATCH is really low; and of course, my electrolytes are a unstable. Can high phosphorous levels cause this?
A.Answer from Dr. Mark Lewis: Yes, high phosphate can bind up the calcium in the bloodstream and drop the calcium levels to the point of tetany. This validates the importance of calcium supplementation and hydration after surgically induced hypoparathyroidism. Regarding your GI symptoms, have you ever had an endoscopic ultrasound (EUS)? In my opinion this is the most sensitive test for the tumors of the pancreas and small intestine that can occur in MEN1 patients. Good luck!
MUCINOUS CYST AND MEN
Q.Can you provide any information on mucinous cyst and the relation to MEN? I have developed one and it has been drained but has returned. We know it is pre-cancerous, however the docs are in a watch mode as the size is 1.5 cm by .6 cm – too small to do anything with. I really don’t like that answer but not sure how to find additional info.
A.Answer from Dr. Mark Lewis: The cyst is in the pancreas unicate. Path result, CEA level is 895. I’m confused by how they “know” the cyst is pre-cancerous. Usually cysts tend toward benign behavior and will predictably return after drainage.
STUDIES FOR MEN PATIENTS
- LOOKING FOR PATIENTS WHO GOT AN UNEXPECTED GENETIC RESULT RELATED TO MEN