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DX 4-12 going to Mayo on 7-23 for surgery.

Posts: 42
Joined: Jul 2012

I'm 55 Stage II no lymph involvement per pet scan. Going to Mayo in Rochester MN. for surgery. Chemo and rad were pretty tough on me, but I'm hopeful. I don't have any support here in NW Ia, as I moved here from Ann Arbor a few years back. Is it possible to be on my own after surgery? My insurance company is trying to deny coverage, saying they are investigating pre-existing conditions...Shocking, but just out of the clear blue, I couldn't swallow one night in March..4 scopes later, and the DX.

mardigras's picture
Posts: 210
Joined: Sep 2011

Hello Jan,
I am so sorry that you find yourself here, but welcome to our family.
You will find a wealth of support here and the answers to most questions if you have any.
We are a very positive group of people although if you do ask questions, you will get unadulterated honesty, so please don't be offended by that. I am a carer and my husband was stage 3 prior to his operation with 2 nodes affected. So far his scans have been clear and the news has been good.
I do think you will need some support after your operation, but you do not say what type of operation you are having. If you are having the MIE then your recovery would be much quicker than my husband's, but still I think that you will need someone.

I don't know about insurance, as I am in the UK, but the majority of people here are American's like you, and I am sure that they will be able to help you with that. For my part, I don't see how it is possible for the insurance people to say that EC is a pre-existing condition as you would surely have been diagnosed at stage 1 if that were the case.

I hope that the insurance gets sorted really quickly for you, as you don't need the additional worry at this stage.

May I make a suggestion? If you would like the answer to anything here, just put the question in the title of your post and I know that everyone will weigh in and try to help you.

The very best wishes for your coming surgery, my thoughts are with you.
Hugs and prayers,
Marci x

JReed's picture
Posts: 463
Joined: Nov 2011

Isn't that unallowable under the health care act? How could it be pre-existing? I'm sure your primary care doc, med onc, and surgeon can navigate this one for you.

Best of luck to you and please keep us posted - you are now on our radar and we will all be thinking of you.


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Posts: 42
Joined: Jul 2012

William--they haven't found ANY pre-existing conditions which would render me ineligible for benefits. Just dragging their feet, but when I get claims tallying 160k it gets frustrating. What can I do if they deny my surgery??

GerryS's picture
Posts: 240
Joined: Aug 2010

Jan, Your case sounds familiar. I, too, am from NE IA and had my surgery at Mayo, MN. I was dx at age 58 , two years ago. I had the IL surgery at Mayo by Dr. DeChamps. He is now head of surgery. Dr Alberts is my oncologist. Mayo is a top notch facility and you will be given. Excellent care there. My recovery was at St Mary's, also an excellent hospital. I was Stage II also but one lymph node was cancerous so I had post op chemo at my local hospital. I am 2 plus years NED. And am doing very well.
I had tons of local support and a nurse wife who took excellent care of me postoperative. Recovery is tough and I would suggest help. Please write more and I will do my best to help. In the mean time, you are. In my prayers. God bless....


Not sure how to handle the insurance questions.

Posts: 42
Joined: Jul 2012

Yes indeed, we have much in common here. I want to thank all posters. A bit about my insurance company. They are investigating whether or not I had this diagnosis before. They are definitely acting in bad faith, and they haven't paid .01 towards any claims. I wrote to the Iowa Insurance Commission last week, so waiting to hear from them. I could get an attorney, but that would just prolong their non payment. Eventually, they will have to pay these claims.

I stopped smoking in 2007, and drank socially maybe a drink or two a week.

I'm looking for HHC nurses in area to stop daily after my surgery. I'm unsure of which procedure Dr. Deschamps and team will want to do...hopeful for the least recovery time, as we all do.

I have had my j-tube and port since 4-28-12,because swallowing was difficult up to a week ago. My mass has shrunk 80% from the chemorad, so feel pretty good about that. I'm eating really good now, just very small meals and Jevity at night.

I have my sad moments believe me--this DX hit me like a ton of bricks.

sandy1943's picture
Posts: 883
Joined: Jun 2010

Jan. the dx hits us all like a ton of bricks. What? who me? No, I can't have Cancer. We all have experienced this shock,and yes, we do have our sad moments. The future can get brighter. I was stage three with two lymph nodes involved. After 4 1/2 years, I am now NED. Life is almost normal again.

Insurance companies can be a pain. There's no way they can deny coverage.

If you could arrange for someone to be with you after surgery,it would be for your good. I had the Ivor Lewis and I couln't have managed without round the clock help.I'm sure the MIE would be better.

Praying for you,

flmo's picture
Posts: 72
Joined: Jan 2011

My husband had MIE surgery at the University of Pittsburgh Medical Center with Dr. James Luketich. We researched Mayo Clinic in Minnesota and the one in FLorida before deciding on UPMC. Mayo has suegeons who perform MIE as well as the IL procedure. From what I could gather, you are assigned a surgeon at Mayo who may or may not do MIE. If you want an MIE you have to request a surgeon who performs that procedure. As William said, the MIE is prefered due to the small incisions and much quicker recovery. Lots of pros and cons on this website, but I would definitely recommend the MIE for these reasons. Best of luck in your research.


hopefulsurvivor49's picture
Posts: 32
Joined: Apr 2012

Your hospital should have a customer service department or patient liaison that can help you with the insurance baloney. Call the hospital's billing department, and don't hang up until you get a name and/or phone number of someone who can help you. Tell them what the insurance company is doing, that you are obviously disputing this ridiculous tactic by your insurance company, and that the hospital needs to halt all payment obligations by you until you resolve this dispute. The hospital is your friend here, so be polite and nice (as I'm sure you are anyway, but when it's life or death and one is fighting bureaucracy, I have sometimes found it hard to be a patient patient!). Insurance companies can be disgraceful.

Call -- in addition to writing and filing a complaint online if possible -- your state consumer protection and/or attorney general's office. They are often understaffed and overworked, so don't be surprised if you don't get very far with them.

Call the insurance company and don't hang up until you reach a supervisor. Ask them specifically what documents they need from your physician/surgeon.

If you are savvy with online research, do some poking around on position papers by your insurance carrier. You might find something that flat out states your surgery is covered.

Call your doctor, or speak to him/her personally at your next visit, and explain what is going on, and that you need their administrative assistant to intervene and write a letter to your insurance company (would help if you had a name to which you could send it) explaining why this surgery is mandatory.

Sometimes you just need to find the right person to move things along.

Most importantly, as difficult as it is to not get agitated about this, try to focus on your treatment right now, and not the insurance complications. From what you have told us here, there is no legitimate reason for them to deny coverage to you. It may just take a while to battle it out and get past the layers of bureaucracy.

Finally, regarding help afterwards, if you attend a church, there are often excellent support networks in place to help fellow parishioners post-surgery, by providing meals and rides, doing errands, etc.

Best to you, and good luck, with your surgery.

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