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Pancreas Cancer

IPMN was posted 10/27/2013 09:30 am by Tonia
E-mail Address: Tonia.smith55@yahoo.com

Message Text
Hi all. I am a 44 year old mother of two. I am in excellent health, don't drink, don't smoke, run very long distance races. Recently, I was experiencing some chest and back issues that were highly unusual for me. My new primary doc sent me for a CT scan to look for a PE. I did not have a PE but they told me the cyst in my pancreas had grown. I didn't even know I had a cyst in my pancreas, but I guess it was noted in a scan I had back in 2005. I have now had a CT scan, an MRI and an EUS. The gastro believes it is an IPMN. The cyst is now 2 x 2.5 x3.5 according to the MRI report. It had thickening walls, mucin and septations. The doctor said he believes it is main duct but it needs to come out regardless because of 'very worrisome' features that he saw. The gastro says it needs to come out in the next 6-8 weeks. I am having issues with my insurance company not wanting to send me out of network for a pancreatic specialist for the surgery, and they are also telling me that I cannot see the best general surgeon in town for this procedure bc he is out of network. There is one general surgeon in network, but he is booked months out. I haven't even gotten to talk to a surgeon at this point at all. I know the gastro said distal pancreatectomy, but I have no idea yet if it will be an open or lap procedure, or if they will remove my spleen. The doctor thinks they caught it early enough, but he said they won't know for sure until it is out and can be sent to pathology. I guess I am looking for some guidance, support, etc because I am worried about this surgery and know I should be going to someone who has done lots of them. I don't know anyone who has had this type of surgery. I know it is not as complex as a whipple but I am afraid right now. I know for some of these cysts a watchful waiting is ok, and I was hoping I would fit into that category, but I guess not. I would just love to hear form people who have had this done so I can figure what to expect. Or any advice on how to get the insurance to cooperate with me.

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
FULL DISCLAIMER


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