Thank you, thank you all for your much needed support..

Wife of patient 50378

Thank you for your comments, your insight and sharing your experience. This weekend I tried to engage my husband in conversations. He believes in his Onocolgist. She scares me. She provided us with information regarding the size (circumference) of the Tumor. I ask how long is the tumor? She indicated that it did not matter.... I asked about an MIE she repled "what is that" Oh, those... we do not perform at this facility... she acted like I was a idiot. Oh my god! Oh My god! Im scared.

My husband still refuses a second opinion, I feel helpless, irritated. I feel all I can do is accept his decision and support him.

I plead with anyone new who comes to this board with this nasty disease.
GET A SECOND OPINION.

I hope you all have a blessed day.... and don't sweat the small things!

Sal

json_2011

Change doc , get 2nd opion.
Change doc , get 2nd opion. Sorry but they need to treat you with respect.

TerryV

Wish you luck with your husband
I'm so sorry that your husband is being so stubborn in this life & death matter, Sal.

Mine did the same, but we were lucky to have had a good medical team to start with. I can't imagine where we would be today if he had placed his faith in incompetents.

Perhaps someone from here on the forum that has experienced what your husband is going through might talk with him? Make gentle suggestions based on their personal experience?

I hope that you are able to open a dialogue....

Terry

LilChemoSmoker

Possibly?????
Sal,

I am wondering. Is this oncologist with the VA? If so, maybe your husband is having inhibitions over going through public health facility. Maybe I am prying too much, but just wondering what your health benefits are at this point. Could this be a financial burden issue with your husband?

Best wishes,
Michelle

Wife of patient 50378

LilChemoSmoker said:

Possibly?????
Sal,

I am wondering. Is this oncologist with the VA? If so, maybe your husband is having inhibitions over going through public health facility. Maybe I am prying too much, but just wondering what your health benefits are at this point. Could this be a financial burden issue with your husband?

Best wishes,
Michelle

Good insurance so far!
Unfortunately.. my husband does not qualify for VA, his parents were Miltary not himself.
The facility is the University of New Mexico Cancer Center. My husband is insured through my place of employment ( large company about 500 empoyees through out the US) decent insurance. The deductable was easily met. The co pays not bad. Health benefits not a problem at this pointno rejections. I am worried though about next year. My companies is changing health plans I hope this will not affect my husband health care.
My husband's Dream Team: oops, sorry, ....that was caddy of me!
The gastrologist Dr Whigman who performed the upper GI (who was absolutely fabulous, informative, and asnwered all my questions) refered us to Dr. Schwartz the surgeon, who refered us to Dr. Bauman the Oncologist, who referred us to Dr. Shroeder The Radiologist. Everything happened so fast. My husband has stated a few times he has been to 13 Doctors appointments and treatment has not commenced as of yet. He has not begun treatments, he is already tired of being poked and prodded,waitnig rooms, the anxiety and anticipation. I am quiet sure many folks here have experienced these same feelings.
Sal

Wife of patient 50378

Wife of patient 50378 said:

Good insurance so far!
Unfortunately.. my husband does not qualify for VA, his parents were Miltary not himself.
The facility is the University of New Mexico Cancer Center. My husband is insured through my place of employment ( large company about 500 empoyees through out the US) decent insurance. The deductable was easily met. The co pays not bad. Health benefits not a problem at this pointno rejections. I am worried though about next year. My companies is changing health plans I hope this will not affect my husband health care.
My husband's Dream Team: oops, sorry, ....that was caddy of me!
The gastrologist Dr Whigman who performed the upper GI (who was absolutely fabulous, informative, and asnwered all my questions) refered us to Dr. Schwartz the surgeon, who refered us to Dr. Bauman the Oncologist, who referred us to Dr. Shroeder The Radiologist. Everything happened so fast. My husband has stated a few times he has been to 13 Doctors appointments and treatment has not commenced as of yet. He has not begun treatments, he is already tired of being poked and prodded,waitnig rooms, the anxiety and anticipation. I am quiet sure many folks here have experienced these same feelings.
Sal

Where the heck is spell check on this board?
Sorry about all my typeos, always in a hurry, is ther a spell check? This is the first messae board I have participated on.

Sal

TerryV

Wife of patient 50378 said:

Where the heck is spell check on this board?
Sorry about all my typeos, always in a hurry, is ther a spell check? This is the first messae board I have participated on.

Sal

Spell Check - no where to be found....
The only way to spell check is to 1st type in Word or other word processing program, spell check there, then copy back to the forum.

Yuck, I know..

Terry

chemosmoker

I am seeing RED!!!!!
Sal,
On the spell check, if you download and use GOOGLE CHROME instead of IE or Firefox, it has a built-in spell checker. Anything I type wrong is underlined red just like in WORD and can be corrected by a simple right-click and list of CORRECTLY spelled choices! I am a horrible typist. That is why my posts LOOK so good! lol

On to serious matters...

I WOULD RUN LIKE HELL FROM ANY CANCER CENTER THAT COULD NOT EXPLAIN WHAT MIE, THE AND IL ALL STOOD FOR AND WHAT THE DIFFERENCES AND BENEFITS OF EACH ONE ARE.
I MEAN THIS. RUN, DON'T THINK. RUN. SORRY.
This REALLY does scare me to read Sal!!!!!!

I have never heard of this except at a small town hospital. We are always advising about making sure the thoracic surgeon does X number of procedures a week and so on, and this place doesn't know what the most widely recognized procedure for EC is? Something is VERY wrong and you must get through to your husband before he is loosing this battle because of a stupid decision a doctor makes FOR him if he is really listening to them so well.

Heck, even IF they had all the right answers, and had just made you feel like you described, THAT right there is enough to make me want to tell you you are in the wrong place. This is NO time in your lives to be making decisions with people who do not have your husbands very very very best interest at heart. I am steamed. Pissed. Makes me want to come there and go with you to this "cancer center" and really make some noise. Whew.

As for the UMPTEEN doctor appointments and still NOTHING done, that is perfectly normal. I freaked out in the beginning too. We had SO many appointments and SO many tests, and no one was doing ANYTHING to get the cancer out of me or get any treatment started. First, they scare the hell out of you with the diagnosis, then they make you wait and wait through all the tests and waiting rooms and nurses and weigh-in's and on and on. It is normal. The cancer takes a few years usually to get to the point that we catch it, sadly. They explained to us finally that a few more weeks (or months in some cases) of testing and appointments will not make or break whether the treatment works or not, and when the chemo starts is not that urgent if things are still where they were when they diagnosed him. It SEEMS so urgent, but really, they get things going after they know what to do. They HAVE to have the right staging and testing or you risk the wrong cocktail or radiation or plan. Nothing is worth that.
I know how you and he feel, though, for sure!!

Please, keep us posted as to what happens and if you get anywhere trying to talk to your husband. Maybe there is a way some of us could call him? I don't know. I know most people hate that kind of intrusion. I just worry about his safety and success there. What i wouldn't give to be NOT at stage IV and have some options. I sure wouldn't be wasting any time with a center that doesn't have an A++ rating on THIS board and a protege of Dr. Lukitech's (Spelling) at UPMC I believe, if not the man himself from all I have learned.

I will be praying for you, EXTRA HARD now.
God bless.
-Eric

LilChemoSmoker

Wife of patient 50378 said:

Good insurance so far!
Unfortunately.. my husband does not qualify for VA, his parents were Miltary not himself.
The facility is the University of New Mexico Cancer Center. My husband is insured through my place of employment ( large company about 500 empoyees through out the US) decent insurance. The deductable was easily met. The co pays not bad. Health benefits not a problem at this pointno rejections. I am worried though about next year. My companies is changing health plans I hope this will not affect my husband health care.
My husband's Dream Team: oops, sorry, ....that was caddy of me!
The gastrologist Dr Whigman who performed the upper GI (who was absolutely fabulous, informative, and asnwered all my questions) refered us to Dr. Schwartz the surgeon, who refered us to Dr. Bauman the Oncologist, who referred us to Dr. Shroeder The Radiologist. Everything happened so fast. My husband has stated a few times he has been to 13 Doctors appointments and treatment has not commenced as of yet. He has not begun treatments, he is already tired of being poked and prodded,waitnig rooms, the anxiety and anticipation. I am quiet sure many folks here have experienced these same feelings.
Sal

Okay so that's not it...
Sal,

I am so rooting for you! I do hope that with a little time and less poking at this point he might calm down and be willing to open an ear. Keep your eyes and ears peeled for that 'momentary glimpse' of calm and when it happens, jump on it. But take it easy, he is obviously sensitive at this juncture and could be doing a bit of processing internally that none of us are aware of yet.

I would still ask him for a scheduled sit down. Set up the rules for the sit down to be a "safe" zone with a rigid time frame so he can commit to the time and know that it will be over at the end of that time. But during that time he must give you full disclosure and attention to your needs and your opinions and your questions. This is "your time". I say all this again because I know from personal experience, that when someone is stubborn and insisting on a subject to be dropped, there is usually a better response to a structured invite to the dialog that presents it in a forum of rigidity. For some reason the 'knowing' that they only have to put up with it for a short amount of time and know that the discussion will 'end' makes it less threatening. I really don't mean to harp about this, but I do have a lot of experience with bullheadedness and stubbornness, not with my husband (no squabbling here LEE!), but other family members.

I will leave the subject alone at that...lol as I say to those I have rigid communication standards as part of the dialog.

You must be exhausted with all the anxiety and hurt of all that has happened in such a short time. Remember also to please take care of your self. You can not possibly offer up to others that which you have not acquired for your self! Possession IS 9/10ths of the law. I have to tell myself this daily as I care for my dear and so admired husband.

All is still not lost with your husband's EC. Moments will come and if you are watching carefully and mindfully, you will pounce when appropriate and achieve what you have set out to do. I believe in this wholeheartedly and am so impressed with your patience thus far! Keep posting here and we will keep pushing forward with you!

Hugs and squeezes from me!
Michelle

Gatoraid

MIE Versus Ivor Lewis Surgery
You are 100% correct that your Oncologist is scary and totally uninformed. I had MIE surgery and was home in 6 days with 9 small wounds for drains, cameras and the actual surgery. With Ivor Lewis taditional surgery, They cut you from the back all the way around to the middle of your chest, knock a hole through 2 ribs and there is a far greater chance of infection along with a longer and more difficult recovery. It's important to keep after your husband about a second opinion and the importance of an Oncologist and surgeon with specific expertise with this type of cancer.

When I got this I did alot of research to find the best facility, doctors and surgeon and I made multiple appointments. It was a pain but it paid off. The decisions made were jointly with my wife. It effected me, but it also effected her in a big way, so we handled it as a team. The reason why the Oncologist said the length of the tumor was irrelevent is that when they remove the tumor, they take allot of the esophagus out to make sure there is no residue left after the tumor is removed.

Work on your husband. You both deserve better care than you are receiving.

Good Luck,

Jim

Unknown

Wife of patient 50378 said:

Where the heck is spell check on this board?
Sorry about all my typeos, always in a hurry, is ther a spell check? This is the first messae board I have participated on.

Sal

This comment has been removed by the Moderator

Unknown

Wife of patient 50378 said:

Where the heck is spell check on this board?
Sorry about all my typeos, always in a hurry, is ther a spell check? This is the first messae board I have participated on.

Sal

This comment has been removed by the Moderator

Wife of patient 50378

Gatoraid said:

MIE Versus Ivor Lewis Surgery
You are 100% correct that your Oncologist is scary and totally uninformed. I had MIE surgery and was home in 6 days with 9 small wounds for drains, cameras and the actual surgery. With Ivor Lewis taditional surgery, They cut you from the back all the way around to the middle of your chest, knock a hole through 2 ribs and there is a far greater chance of infection along with a longer and more difficult recovery. It's important to keep after your husband about a second opinion and the importance of an Oncologist and surgeon with specific expertise with this type of cancer.

When I got this I did alot of research to find the best facility, doctors and surgeon and I made multiple appointments. It was a pain but it paid off. The decisions made were jointly with my wife. It effected me, but it also effected her in a big way, so we handled it as a team. The reason why the Oncologist said the length of the tumor was irrelevent is that when they remove the tumor, they take allot of the esophagus out to make sure there is no residue left after the tumor is removed.

Work on your husband. You both deserve better care than you are receiving.

Good Luck,

Jim

Thanks Jim!

Thanks Jim!