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Discussion Starter · #1 ·
I've been treated for IBS for more than 20 years. During a recent flareup I experienced some problems swallowing which I thought was related to the dry mouth of Pamine. I mentioned it to my GI doctor and he suggested an upper endoscopy.Last Wednesday I went in for what I thought was a routine procedure and awoke afterwards to be told that I had a mass in my esophagus. Pathology showed it to be malignant.I have since done a lot of research on this and found that reflux over a period of time and lack of fruits and vegetable in diet are contibuting risk factors. With IBS-D fiber has never been a friend of mine.I would recommend all of you ask your doctor, maybe even demand an upper endoscopy every few years. The death rate is "low" at about 18,000 per year so this is not getting much press. But like colon cancer the endoscopy can lead to early detection.The upper endo is really easier than the lower. There is no preparation and I was put completely out. I don't remember anything about the procedure.The physician community doesn't seem to care much about us but we do and I think we have the right to demand the procedures that could save our lives.How about pink belts or something for IBS survivors?Wish me well on my journey of treatment of a cancer that could have been prevented with screening.Pray for me if you will.
 

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Phef-really sorry to hear your news-you must be devastated. Had a work colleague go though it a couple years ago. Don't go blaming yourself for what you did or didn't do-awful things happen to people sometimes. You didn't deserve this esp on top of IBS too. I'm sure you will get lots of good wishes from the board-keep us posted how you get on. I'm sure lots of people on this board, friends and family will pray for you. All the best.
 

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Hope things go well and the get everything.Anyone who has symptoms of reflux for an extended period of time (and not all IBSers do) should be checked out as they sometimes can catch this early.
 

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Discussion Starter · #5 ·
An update from me on my Cancer. I am not a cancer but I have one. I went to MD Anderson and spent the past week going through testing from simple blood work to CT Scans and Pet Scans and an attempt at another Upper Endoscopy this am. However, I had been able to eat so little this past week and got up every morning at five with nothing to eat after midnight that I had food in my stomach this am and they could not complete the test. I traveled here in Houston with significant other from St. Louis, Missouri. We tried to get an appointment for Tuesday to repeat this test since Monday is a holiday. (DO you think my cancer knows it's a holiday??????) We asked for Tuesday so we could stay over and save some expenses such as airfaire etc. They could not get me in on Tuesday but countered with an appointment next Friday. How would that save me money?????This is MD Anderson, one of the top cancer hospitals in the world at least in theory....... The "Tumor Review Board", no kidding that is what they call it meets next Tuesday. Hoping my case will be discussed for treatment even without the Upper Endo today.The weird thing is it appears my CANCER was caught relatively early and may be in early stages. Early detection is a good thing right? Wouldn't you think that early TREATMENT would be recognized as something important by a place as notable as MD Anderson?I will keep you posted.Get you stuff together and ask you GI doc for an upper endoscopy. You'll enjoy it. There is no prep and you are totally anesthetized. Demand yours today.
 

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I think having a group of different people looking over all the data and determining the best course of action would be a good thing? Sounds like you don't want that?Often for cancer the course of treatment does need to be individualized and it really does help to have a group of people work through the various parameters to figure out what would be best for you. Just getting shoved into some one size fits all treatment without anyone really looking over your case probably isn't a good idea.Usually a week or two doesn't get you from early cancer to late stage. It does take time to review all the data and get the full picture and better for them to get you on the right treatment first, then just start shoving chemo in or cutting things out before they really have a chance to make the best plan. Your mileage may vary.
 

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Discussion Starter · #7 ·
I think having a group of different people looking over all the data and determining the best course of action would be a good thing? Sounds like you don't want that?Often for cancer the course of treatment does need to be individualized and it really does help to have a group of people work through the various parameters to figure out what would be best for you. Just getting shoved into some one size fits all treatment without anyone really looking over your case probably isn't a good idea.Usually a week or two doesn't get you from early cancer to late stage. It does take time to review all the data and get the full picture and better for them to get you on the right treatment first, then just start shoving chemo in or cutting things out before they really have a chance to make the best plan. Your mileage may vary.
I agree that a group approach by excellent medical personnel is a great course of action. I have learned that does not seem to happen at MD Anderson Hospital in Houston, Texas. My own medical records show that the thoracic surgeon who refused to do surgery on me and seemed to have a major influence on my "treatment plan" didn't even write a report into my record. The "attending" gastroenterological oncologist states in his last report that he explained his recommended course of treatment to the family. That would be me and my wife, neither of whom he explained anything to.I would recommend people away from MD Anderson Cancer Center in Houston, Texas. I know this goes against the grain but it has now been three weeks and they still do not have all of my records to Barnes Hospital in St. Louis. My PET Scan showed a "hot spot" in my shoulder which should have been followed up by a normal x-ray was simply "deemed" to probably be cancer. A scientist cannot deem something to be cancer and properly be doing his/her job. There are numerous alternative to "DETERMINE" scientifically whether that "hot spot" is cancer or not and that should have been done to render proper medical care.If you feel differently please let me know.
 

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There can be bad doctors anywhere, but usually something as complex as cancer is better off when you have a treatment team rather than one individual.At least with several eyes there is a chance that one bad doctor will get over-ruled. If you only have one person that ever looks at the data and they are really bad you are screwed.
 

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Some hospitals have so-called "patient advocates" who help when the patients aren't getting what they need from the physicians. Maybe they're in your hospital?Good luck.
 

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Discussion Starter · #10 ·
There can be bad doctors anywhere, but usually something as complex as cancer is better off when you have a treatment team rather than one individual.At least with several eyes there is a chance that one bad doctor will get over-ruled. If you only have one person that ever looks at the data and they are really bad you are screwed.
. An update on my case. I had my first chemotherapy treatment yesterday, March 30, 2010 at the Siteman Cancer Center at Barnes Hospital. Fortunately, there were several doctors at Siteman who reviewed my PET Scan. An entire team of radiologist reviewed my PET Scan from MD Anderson and could not find anything that looked like cancer in my shoulder "hot spot". They followed up by doing a CT Scan of that shoulder to biopsy anything they might find. Again, a team of radiologist reviewed the CT Scan and couldn't even find anything to biopsy, NOTHING.At MD Anderson the PET Scan was reviewed by only one radiologist who did not say it was cancer but that it was an area of concern. The surgeon, who is not a radiologist, deemed it to be cancer in the hot spot, and the GI oncologist agreed without further review by anyone. He then sent me home without a referall or any of my records, slides, films, cd's of scans.Thank God that I found the doctors at Siteman Cancer center who actually work as a team.I was staged at 3.5 at MD Anderson without data to support that. After significant research and additonal testing at Siteman I am a stage 3, worst case on chemotherapy to restage me at a 2 to 2.5 and probable surgery.Just because the book was a New York Times bestseller doesn't mean it's any good. I feel like the reputation of MD Anderson was earned in the past. I believe they still do good things but they handled my case very poorly. One radiologist and a thoracic surgeon can make a determination on a PET Scan to be supported without question by a GI oncologist. Perhaps it is time for MD Anderson to do some peer reviews to assure they maintain their reputation and quality of care.
 

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Hi there.Hope you are as well as can be at what must be a difficult time for you and your family.What sort of surgery are they planning after chemo. The reason i ask is because i used to work in cardio-thoracic surgery.Please let me know how you are getting on.best wishes.
 
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