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I've been workin' on the railroad

RickRoll
Posts: 2
Joined: May 2013

i'm eric.  i'm bugged.

After an annual endoscopy to see my 12 cm-long Barrett's tissue, the physician(#1) noted a "nodule" and scheduled an endoscopic ultrasound. 

I decided to go to a larger city where the GI docs were more practiced.  My Barrett's tissue was further mapped using 45 biopsied sites. Only the nodule had high grade dysplasia and the MD(#2) scheduled me for a endoscopic ultrasound and mucosal resection (EMR).  Upon examination, the MD(#3) noted "cratering" of the nodule and opted not to do the EMR because of possible "rooting" into deeper tissue layers and, possibly, spreading cells if cancerous.  Instead, tissue surrounding the nodule was biopsied and the lymph nodes imaged.  Lymph nodes on either side of the nodule were about 5-8 mm in diameter whereas, normally, they would be unnoticeably small. ( wouldn't other things cause lymph nodes to enlarge such as sore throat, chest cold for the past month, recent biopsies?) Waiting for the pathology report of the tissue surrounding the nodule.  MD(#3) mentioned surgery and wants to schedule an appointment with MD(#4) to discuss options (assuming the biopsy report will so dictate). 

MDs #2, #3 and #4 all know each other, work closely together and have "high marks" for gastroenterology issues.  The first time I went to see #2, I filled out the basic questionaire in which I was asked, "Have you ever declined a procedure or surgery that you were advised to undergo?" (something to that effect).    Why would they ask that question?

Now my intuition is being invaded with paranoia and cynicism, as I get the feeling that I'm being funnelled through the stages into surgery because I have good medical coverage. Like "This looks like a good candidate for putting through the entire ringer.  Max out every procedure.  Maximum number of biopsies, appointments, procedures, chemo treatments, radiations, surgeries--the works--and we will get paid!  I just know that the pathology report this coming Wednesday will "suggest" the patient should undergo everything we can soak him for.  I just know it.

Being the stubborn and recalcitrant person that I am, I might just say no to it all.  Hell no.  Go to hell.  NO!  I can't think of anything I would rather NOT have, than a esophagectomy. 

The more I think about this, the stucker I get.  I'm feeling like a sucker; yeah, a stuck sucker.  Ha! 

Sort of feel like I'm losing rationality.

I gotta go for a walk.

 

 

 

 

RKMikulski's picture
RKMikulski
Posts: 34
Joined: Apr 2013

Be careful this is a very agressive Cancer. My husbands and many others story sounds much like yours, he is 4 weeks post ivor Lewis. cancer was at the ge junctions and his stomach. Please get a independent 2nd opinion. 

MartinG5602's picture
MartinG5602
Posts: 22
Joined: Jun 2012

This is NOT the time to be stubborn. Get another opinion as quickly as possible.  Anderson in Houston plays no games about testing for EC.  If not there, you better go check it out at the best cancer center possible and go NOW!  The Ivor Lewis surgery was not so bad.  My husband was released on the 4th day.

flmo's picture
flmo
Posts: 72
Joined: Jan 2011

What you described sounds a lot like what my husband went through.  He was diagnosed with high grade dysplasia from Barrett'e.  His GI doctor recommended radio frequency ablation (RF) ,but after all the tests were completed he was told that surgery was the best option even though they didn't call it cancer.  He was very discouraged and upset to think about having major surgery after being monitored for 10 years for Barrett's. My suggestion to you is to get a second opinion at a major cancer center. If possible try to find a surgeon who does MIE- minimally invasive esophagectomy.  If caught early enough you may not need chemo and/or radiation. My husband didn't have either chemo or radiation. He had his surgery in Feb. 2011 at the University of Pittsburgh Medical Center with Dr. Luketich who is the pioneer in MIE.  The final biopsies came back at stage 1 cancer -T1N0M0-so you never know. Just don't wait too long.  The surgery is major,but if you have MIE the recovery time is much less than with the Ivor Lewis.

JKGulliver
Posts: 92
Joined: Apr 2013

I think the question you were asked is routine and not particular to you.  The question may have something to do with determining pre-existing conditions.  Diagnosis is like a mystery that needs to be solved.  Previously offered treatments tell a doctor alot about what someone else thought was going on.

If you do not trust your physicans, you should seek a diagnosis at another cancer center.  It does not hurt and may give you additional insight.  You want to be able to go for walks for a long time to come.

RickRoll
Posts: 2
Joined: May 2013

I appreciate the the frankness of your comments.  I... behaved badly.  Yell

Hearing from you folks, I have made appointments to speak with two surgeons about options.  

I am going to get this taken care of.

Thank you.

eRick

 

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