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Pancreas Cancer

Tonia was posted 10/27/2013 10:30 am by Lyn
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I'm sorry to hear about your frustrating time with getting blind-sided by your cyst (hello!) and then fighting with an insurance company.

First, you are very lucky to have caught this early, as the septations/thickening walls and increasing size means this needs to come out. Your youth, good health and determination/resourcefulness are all going to help you. You will get through this. But you are absolutely right that you need the best surgeon you can find. I like that you seem to have a Gastroenterologist who is on the ball and working this up and guiding you appropriately...

If you are comfortable with sharing where you are/nearest major city, others on this board can share if they worked with a surgeon near you. Next, contact PANCAN by phone or email, and they will also give you excellent advice about surgeons near you. They may even have some pointers about fighting with your insurance company.

http://www.pancan.org/

Here are two excellent websites about pancreatic cysts. The best place for cyst care and treatment is Johns Hopkins, but now there are quite a few very experienced surgeons scattered around the country.

http://www.pancyst.org/screening.aspx http://pathology.jhu.edu/pancreas/cyst/index.php

If you are seriously contemplating doing laproscopic surgery, if your distal can be done that way, you absolutely want the most experienced surgeon possible. Again, come back to this board and ask for recommendations. It would be wonderful if you could get it done this way.

Regarding getting an appointment with a surgeon. First, the one in your network - get on the cancellation list. Then call every. single. morning and ask if any cancellations. You can often get in early.

And make an appointment with the best surgeon in your area regardless, and do same as above. Worst case scenario, you pay for a clinic visit out of pocket (not that much), but chances are you may get the money back with fight in the future with your insurance company. The 'best surgeon' may also be experienced with fighting with insurance companies and be able to give you recs, refer you to other docs and more.

It is always good to have two opinions anyway.

Next, talk to your gastroenterologist and describe the trouble you are having getting your insurance company to refer you to a specialist. Ask if he/she can make a phone call and/or write an appeal letter for you. Also, write your own appeal letter yourself (sometimes the doc will just sign it!) by doing research and mail it to them as soon as you can, and start calling every week to fight with them. Keep asking for a higher and higher supervisor. Never accept 'no' for an answer.

Make copies on DVD now of all your scans (the actual pictures), photocopies of your scan results and labs, as each surgeon will want a copy. And start a 3 ring binder to keep everything in one place.

I wish I could give you more info, but I am still learning myself. My Mom died of pancreatic cancer 2 years ago, but it was a different type then the kind related to cysts. But unfortunately, we learned this year that my father now has pancreatic cysts that look like multiple IPMN. He has his EUS in one week. I still can't believe it, and am trying not to panic. Life is rough...

Hang in there. You can get through this.



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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.
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