Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 and , As someone who also faces the esophagectomy and the terrors that comes with making that decision, I have to put my two cents in regarding the mortality rates that you are referencing. All of the esophagectomy reports/studies that I have read so far have referenced scary mortality rates, however the majority of patients included in these studies are suffering from cancer, and most are pretty advanced by the time they have this surgery. I have yet to find a study that only follows mortality rates for esophagectomies performed on achalasia patients - I wish there was one. That being said, those of us with achalasia that are relatively healthy otherwise have a much better chance of survival and of minimal complications than someone with advanced cancer that already has a compromised immune system and other health related issues. I am not saying that there are no risks for us - this is a very serious surgery and the possible risks should not be taken lightly. However, when you hear these odds and read the studies, you have to keep in mind who the majority of people are that have this surgery. Again, I don't take it lightly, I am trying to make the same decision that you are, and it scares the hell out of me. However, we need to put certain aspects of it in perspective and make a truly educated decision before we run away scared because of some numbers that may not be truly representitive of OUR condition. Just my thoughts, in NY and the PEG tube achalasia > > Hi , > > Yes, our little E-ectomy " sub-group " will no doubt bind us > together along > with the pre and post myotomy groups here. Nobody is here for a > good > reason, but there will be " good, " from coming being here. > > I have never heard of a peg tube before, but I realize at > this point, as > I graduate to a new level of " treatment " that there is going to > be much I'll > have to learn. Google is my next step. > > Peg Tube - Percutaneous Endoscopic Gastrostomy Tube > > Click on _Tube feeding_ > (http://www.oralcancerfoundation.org/dental/tube_feeding.htm) > > Its a tube that goes directly into the stomach from outside the > body. > Ensure is one of the drinks that gets poured in, much like a can > of oil into the > car's engine. > _Peg Tube_ > (http://www.oralcancerfoundation.org/archive_boards/treatment/peg_tube. htm) (for a message board about using it) > > > As said, this is primarily for oral and esophageal cancer > patients as > this is the only way to receive nutrition. Considering the > nature of the > disease, its not a big deal. > > , so my surgeon says a mortality rate of 1 in 20, and your > surgeon says > a rate of 1 in 5. I would suggest that you go see my surgeon. > > What do these numbers mean to us? We have read that in the U.S. > there is > one new case of achalasia per year per 100,000 people. And we > got it! > 1 in 100,000 and it was us! If a doctor then says to you that 1 > in 5 die, > or 1 in 20 die from the esophagectomy, and we were already > " selected " as the > ONE in 100,000, what chance do we have of not being the ONE in > five, or the > ONE in 20 who die from this surgery. I'll follow 's lead, > to search for a > better answer, any day to improve those odds. > > I plan on inquiring, and if permitted, sending my records to Dr. > Patti, and > Dr. Rice. Those are the two names that come up the most here. > > In the meantime, its way overdue for me to initiate some life > style changes, > such as eating smaller quantities, and if need be, add in between > meals. > In the past I had never considered (much less thought about) > using Ensure, but > there comes a time. > > I will be following up on all the doctors names everyone has sent > me, and I > thank all of you for making it easier for me that way. > > > > In a message dated 8/2/2006 3:59:18 P.M. Eastern Daylight Time, > susan@... writes: > > > > > Hi , I just wanted to send along my best wishes also. I am > also > facing having an esoghagectomy, so I am following your story with > great interest. > I was told the mortality rate was more like 20% because it is > usually > erformed on cancer patients. That was quickly followed by . . . > but it's exactly > the same operation. 1 in 5 was way too high for my liking. My > original post is > here somewhere when I first came from seeing Dr. Gehman. I was > pretty > horrified and scared, but I'm doing O.K. emotionally now. I know I > will have to > travel to Toronto when the time is right, but having an > esophagectomy is my only > alternative. (I have already had two open myotomies) The risks > are huge, And > I was also told it wouldn't last too many years as my new > esophagus would > just stretch right out again. I may just live with a peg tube > instead. (I don't > have one yet though) For now, I'm just living day by day with my > struggle to > eat. Hot chocolate (Nestle's Quik with hot milk) seems to be my > easiest > " food " to manage right now. Is any one using a peg tube to help > them eat? > > > Thunder Bay, Ontario Canada > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Hey, where on earth did those mortality figures come from? Most centres have rates as low as 5% for an oesophagectomy now and some centres are even lower. These figures are published in England so I would imagine they are in the USA too. However, do remember that these figures include people with progressive cancer. Oesophageal cancer is notoriously late in presenting so the cancer is quite severe. Also, these patients have often been on 3 months chemotherapy to shrink the tumour prior to surgery. I have been told my risks are around 1%. This is still way to high for a comfortable nights sleep but it is some comfort and sounds much better than 20%. STEVE and the PEG tube Hi , Yes, our little E-ectomy"sub- group" will no doubt bind us together along with the pre and post myotomy groups here. Nobody is here for a good reason, but there will be "good," from coming being here. I have never heard of a peg tube before, but I realize at this point, as I graduate to a new level of "treatment" that there is going to be much I'll have to learn. Google is my next step. Peg Tube - Percutaneous Endoscopic Gastrostomy Tube Click on Tube feeding Its a tube that goes directly into the stomach from outside the body. Ensure is one of the drinks that gets poured in, much like a can of oil into the car's engine. Peg Tube (for a message board about using it) As said, this is primarily for oral and esophageal cancer patients as this is the only way to receive nutrition. Considering the nature of the disease, its not a big deal. , so my surgeon says a mortality rate of 1 in 20, and your surgeon says a rate of 1 in 5. I would suggest that you go see my surgeon. What do these numbers mean to us? We have read that in the U.S. there is one new case of achalasia per year per 100,000 people. And we got it! 1 in 100,000 and it was us! If a doctor then says to you that 1 in 5 die, or 1 in 20 die from the esophagectomy, and we were already "selected" as the ONE in 100,000, what chance do we have of not being the ONE in five, or the ONE in 20 who die from this surgery. I'll follow 's lead, to search for a better answer, any day to improve those odds. I plan on inquiring, and if permitted, sending my records to Dr. Patti, and Dr. Rice. Those are the two names that come up the most here. In the meantime, its way overdue for me to initiate some life style changes, such as eating smaller quantities, and if need be, add in between meals. In the past I had never considered (much less thought about) using Ensure, but there comes a time. I will be following up on all the doctors names everyone has sent me, and I thank all of you for making it easier for me that way. In a message dated 8/2/2006 3:59:18 P.M. Eastern Daylight Time, susantbaytel (DOT) net writes: Hi , I just wanted to send along my best wishes also. I am also facing having an esoghagectomy, so I am following your story with great interest. I was told the mortality rate was more like 20% because it is usually erformed on cancer patients. That was quickly followed by . . . but it's exactly the same operation. 1 in 5 was way too high for my liking. My original post is here somewhere when I first came from seeing Dr. Gehman. I was pretty horrified and scared, but I'm doing O.K. emotionally now. I know I will have to travel to Toronto when the time is right, but having an esophagectomy is my only alternative. (I have already had two open myotomies) The risks are huge, And I was also told it wouldn't last too many years as my new esophagus would just stretch right out again. I may just live with a peg tube instead. (I don't have one yet though) For now, I'm just living day by day with my struggle to eat. Hot chocolate (Nestle's Quik with hot milk) seems to be my easiest "food" to manage right now. Is any one using a peg tube to help them eat? Thunder Bay, Ontario Canada Quote Link to comment Share on other sites More sharing options...
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