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blog on EC

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Thought I'd share

http://cancervivor.blogspot.com/

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

I took a good look at this fellow's blog - amazing that he keeps at it four years later! Were you able to find out his initial staging? I looked and couldn't find it...just curious. Kim

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Good points, William, as usual. I am retired Coast Guard and my health insurance is through Tricare, the DOD program for military retirees. When I was first diagnosed with EC by my local GI, he recommended an EUS and a CT scan as the next steps before mandatory surgery, then described the Ivor Lewis procedure in great detail, never mentioning the MIE (I don't think he was aware of it!). Fortunately for me, I had an "in" with the senior Endoscopy doc at Mass General Hospital in Boston (Dr. Bill Brugge) who, after confirming the EC with EUS, described the MIE as my preferred surgical option and sent me upstairs to a surgeon who had spent several months in 2003 with Dr. Luketich in a fellowship specifically to learn the MIE. It turned out none of the in-network thoracic surgeons affiliated with my plan were familiar with the MIE, and yet my referral to Dr. Morse (the surgeon at Mass General) was initially denied. It was only because I had heard of the MIE myself AND did the research to document why it was so superior to the Ivor Lewis, that my plan reversed their initial decision and approved Dr. Morse.

I am eternally greateful to Dr. Brugge for strongly recommending the MIE, and to Dr. Morse for performing it (successfully, so far!). Not every EC patient is a candidate for the MIE, of course, but everyone should be made aware of it, at least. And if your surgeon hasn't even heard of it, I'd certainly encourage every patient to seek a 2nd and maybe a 3rd opinion. And, to my experience, if the patient's insurance plan balks in any way, immediately research not only alternative surgeons but specifically research your appeal procedures and pursue them agressively. I was passionate in my appeal, and it was approved in very short order and included a phone call apologizing for having denied the initial referral without researching it first from their end.

I think it's important to remember that we lose control of many things when we're diagnosed with EC, but that doesn't mean we have no control of our future or our treatment options.

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Very well put, Bob!

Terry

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