Have Hiatial Hernia/Gerd/Poor Esophageal Motility
I have followed this website for a while now as I have been struggling with some horrible symptoms for a while now. I will sum it all up, and ask for your opinions please! I am a 33 year old Fireman, so that in itself poses some cancer risk. I have been diagnosed with GERD and struggle even with my Raberprazole to control my acid problems, often taking two a day now, and still ending many evenings feeling sick and often throwing up as well. I also have almost no Esophageal motility left, and it is hardly working any more. The doctor told me it is about the same as someone in there 90's. They just gave me a scope and said I was cancer free but had a large Hiatial Hernia present. Now, because I have hardly any esophageal pressure remaining I cannot have surgery to fix the Hernia. I am really struggling with a SEVERE lack of energy now, headaches, nausau, some chest pain once in a while, shortness of breath, just overall a MESS! I hate eating now, and I am worried that maybe they have missed something??? They say there is not much they can do for me other then I keep taking these brutal meds. I am 33, what do you all think?? Can an Endoscope miss a cancer diagnosis?? Why am I breaking down so bad?? 1 year ago I could have run a marathon?? Please, any advice would help. Should I ask for some other kind of test that could look deeper?? Thank you all in advance!
Russ
Canadian Fireman
Comments
-
Go to a major cancer center NOW!
Hi,
I don't want to alarm you, but some of what you have written sounds like my husbands EC story. Last year he had a surgery to repair a hietal hernia, before the surgery he had a CT and an endoscopy. They saw no cancer at that time (although I have read the CT and it did say that malignancy should be ruled out), in my opinion the endoscopy missed the cancer. Six months ago Jeff was diagnosed with stage II EC, he has had chemo/radiation/esophajectomy/and more chemo. I wish we would have questioned the first set of doctors more, I wish that we would have gone to a major cancer center. You need answers, you are far too young to have to deal with these health issues.
Niki0 -
Hi Russ,NikiMo said:Go to a major cancer center NOW!
Hi,
I don't want to alarm you, but some of what you have written sounds like my husbands EC story. Last year he had a surgery to repair a hietal hernia, before the surgery he had a CT and an endoscopy. They saw no cancer at that time (although I have read the CT and it did say that malignancy should be ruled out), in my opinion the endoscopy missed the cancer. Six months ago Jeff was diagnosed with stage II EC, he has had chemo/radiation/esophajectomy/and more chemo. I wish we would have questioned the first set of doctors more, I wish that we would have gone to a major cancer center. You need answers, you are far too young to have to deal with these health issues.
Niki
Sorry to read of your troubles. I certainly hope your doctors are right, however, you would be wise to insist on a CT scan. I am a fellow Canadian, so trust me, you may have to push hard, and insist that you get a CT or PET scan. Our health care system's motto seems to be "less is more", so depending on where you are, and who your doctor is, you may have to get a bit demanding about it. I know in our case (London, Ont) we had to be pretty pushy, but always got our way eventually! Don't let the doctors shut the door on you.
Please keep us posted, I'm sure there will be others welcoming you on board, and praying that you don't have EC.
Chantal0 -
Russ,
Mom (84) Stage 3 EC
Russ,
Mom (84) Stage 3 EC had bad acid reflux when she was younger and also had a hiatal hernia. She had surgery for it. With everything we have learned (and read on this board), it's just really important for you to go get 2nd and 3rd opinions. Given your profession, you could have come in contact with some not so nice stuff, so it really would be best if you insist on more tests and opinions.
I had malignant squamous cell carcinoma a few years back and haunted forums. One gal kept going back and back and back because something was not right. Her persistence paid off and they ultimately did find her squamous cell.
Good luck and "welcome" to this forum.0 -
afterthoughtDaisylin said:Hi Russ,
Sorry to read of your troubles. I certainly hope your doctors are right, however, you would be wise to insist on a CT scan. I am a fellow Canadian, so trust me, you may have to push hard, and insist that you get a CT or PET scan. Our health care system's motto seems to be "less is more", so depending on where you are, and who your doctor is, you may have to get a bit demanding about it. I know in our case (London, Ont) we had to be pretty pushy, but always got our way eventually! Don't let the doctors shut the door on you.
Please keep us posted, I'm sure there will be others welcoming you on board, and praying that you don't have EC.
Chantal
I was also thinking to mention, which you may already know...
Try to sleep with your upper body elevated (30 degrees is recommended) You can buy wedges at home health care places, or at places like bed bath and beyond. Also, there are some on Amazon.com.
As to the motility, I can't for the life of me remember the name of the drug, but Lee was given something for motility, as well as the PPI. Maybe that would help. I spent some time searching on line this morning for the name of the drug, and could not find it anywhere. I did find this site, which you may have already read, but seemed to have helpful advice for GERD sufferers.
http://www.medicinenet.com/gastroesophageal_reflux_disease_gerd/page6.htm
Be well,
Chantal0 -
More OPINIONS
I agree wholeheartedly!!! Go to a major cancer center and talk to some experts. Not all oncologists are created equal. A second, or even third opinion would be valid in your case, and quality doctors will NOT be offended by your desire for another opinion, and reading of your various scans. Don't know where you are located, but you can try here
http://www.cancerindex.org/clinks8.htm for some Canadian links.
--Jerry0 -
listen to the advicejgwright said:More OPINIONS
I agree wholeheartedly!!! Go to a major cancer center and talk to some experts. Not all oncologists are created equal. A second, or even third opinion would be valid in your case, and quality doctors will NOT be offended by your desire for another opinion, and reading of your various scans. Don't know where you are located, but you can try here
http://www.cancerindex.org/clinks8.htm for some Canadian links.
--Jerry
Hi,
I think you should go to a cancer center familiar with esophageal cancer just like everyone is saying. I had no motility in my esophagus due to achalasia. Have they mentioned that word to you? Because of no motility, all the food I was eating would stack up in my esophagus. So when I got pain in my middle chest I had an EGD done and they took all the food out and the dr luckily decided to biopsy the irritated areas. One of them was stage III squamous ec, but I was 65 and had gerd, reflux and all of it all those years because of the original achalasia and no motility. So your age is in your favor but my cancer was very hard to see, the dr who did the EUS for staging said he could have easily missed it and I count myself very lucky I had a great dr who did the biopsy. So get thee to a really good gastroenterologist familiar with esophageal motility problems and EC. Good luck to you. take care,
Donna700 -
absolutley agreeDonna70 said:listen to the advice
Hi,
I think you should go to a cancer center familiar with esophageal cancer just like everyone is saying. I had no motility in my esophagus due to achalasia. Have they mentioned that word to you? Because of no motility, all the food I was eating would stack up in my esophagus. So when I got pain in my middle chest I had an EGD done and they took all the food out and the dr luckily decided to biopsy the irritated areas. One of them was stage III squamous ec, but I was 65 and had gerd, reflux and all of it all those years because of the original achalasia and no motility. So your age is in your favor but my cancer was very hard to see, the dr who did the EUS for staging said he could have easily missed it and I count myself very lucky I had a great dr who did the biopsy. So get thee to a really good gastroenterologist familiar with esophageal motility problems and EC. Good luck to you. take care,
Donna70
Please try to find the best place for expert advice related to esophageal disease. I'm glad you found this site, and the people here are wise advocates.
Cora0 -
Thank YouNikiMo said:Go to a major cancer center NOW!
Hi,
I don't want to alarm you, but some of what you have written sounds like my husbands EC story. Last year he had a surgery to repair a hietal hernia, before the surgery he had a CT and an endoscopy. They saw no cancer at that time (although I have read the CT and it did say that malignancy should be ruled out), in my opinion the endoscopy missed the cancer. Six months ago Jeff was diagnosed with stage II EC, he has had chemo/radiation/esophajectomy/and more chemo. I wish we would have questioned the first set of doctors more, I wish that we would have gone to a major cancer center. You need answers, you are far too young to have to deal with these health issues.
Niki
Hey Niki,
Thank you so much for starters for your response! I had the scope done, and looking back at the results I don't think they even biopsied, so that is not good. I will ask about a CT as the only test I have had has been the scope and an esophageal motility test. How old was your husband if I can ask that? And what kind of sypmtoms? The same as mine?
Thank you,
Russ0 -
Thank You!unknown said:This comment has been removed by the Moderator
Hey Sherri,
Thank you so much for your response! So far all I have had done was an Esophageal Motility test which showed I have almost no pressure left along the entire Esophagus. And then the scope, which all they said was that I have a Hiatial Hernia present. They took no Biopsies and I was currently on my medication at the time of the test, which apparantly can skew the results??!! I have had no other tests. I am throwing up a bit more often now. I would say around once a week I will have a really bad day with double the medication combinded with some extra ant acids off the shelf and still be really sick all day, or end up throwing up. There does not seem to be a relation so much to what I eat, it just seems if it's a bad day from when I wake up for my reflux, then by the end of the day I end up sick. I have pushed to see a GI specialist in our area, however nobody is contacting me any time soon. Have they missed something?? Your post is very worrisome??
Thank you,
Russ0 -
Thank You!!Daisylin said:afterthought
I was also thinking to mention, which you may already know...
Try to sleep with your upper body elevated (30 degrees is recommended) You can buy wedges at home health care places, or at places like bed bath and beyond. Also, there are some on Amazon.com.
As to the motility, I can't for the life of me remember the name of the drug, but Lee was given something for motility, as well as the PPI. Maybe that would help. I spent some time searching on line this morning for the name of the drug, and could not find it anywhere. I did find this site, which you may have already read, but seemed to have helpful advice for GERD sufferers.
http://www.medicinenet.com/gastroesophageal_reflux_disease_gerd/page6.htm
Be well,
Chantal
Hey Chantal,
Thank you so much for your reply, much appreciated, and I have taken all these posts to heart big time!! I am listening to all of you guy's and really leaning on you for your help, which as a Fireman is not something I do to quickly. I am supposed to do the saving, not others saving me! I have read a lot of the Gerd related advice and it definitely helps. I was busy throwing up again two nights ago, started as a bad day, and ended as a bad day. I really am quite nervous about the throwing up, and also just how out of breath and weak I am one day compared to the next. How old was your husband if I can ask?? And what kind of symptoms did he have prior to finding out about the cancer?? My motility is the entire Esophagus and not just the bottom. I also had the scope on my meds which I understand can skew the results. I have been referred to a GI specialist in the City of Winnipeg, however no one has called yet and it has been about a month since I was referred and I think I am getting sicker every day. However, is it just the side effect of the medication I am on??? Lots of side effects if that is the case.
Thank you,
Russ0 -
48 years youngFireIce said:Thank You
Hey Niki,
Thank you so much for starters for your response! I had the scope done, and looking back at the results I don't think they even biopsied, so that is not good. I will ask about a CT as the only test I have had has been the scope and an esophageal motility test. How old was your husband if I can ask that? And what kind of sypmtoms? The same as mine?
Thank you,
Russ
Hi Russ,
My husband was 48 when diagnosed, I know you are younger. My word of caution is that Jeff was in his early thirties when his acid reflux began. Right before he was diagnosed with GERD and the hietal hernia at 47 he was having severe chest pains after eating. Also he would wake up in the night choking, we thought it was from snoring, now we know it was acid hitting his throat. The day they found the hernia we actually went to the ER because he thought he was having a heart attack. After the hernia repair he no longer had acid reflux, or he couldn't feel it, sadly it wasn't until food began to stick that they found the tumor.
Here is my advice, go to a major hospital and tell the GI doctor there that you are concerned about EC and want to know if you have Barrets esophagus. Ask for an endoscopy with biopsies to look for high grade dysplasia and a ct scan...you should have one for the hernia. I would also ask Ida Nissen Fundoplication would help with your condition.
My prayers are with you,
Niki0 -
48 years youngFireIce said:Thank You
Hey Niki,
Thank you so much for starters for your response! I had the scope done, and looking back at the results I don't think they even biopsied, so that is not good. I will ask about a CT as the only test I have had has been the scope and an esophageal motility test. How old was your husband if I can ask that? And what kind of sypmtoms? The same as mine?
Thank you,
Russ
Hi Russ,
My husband was 48 when diagnosed, I know you are younger. My word of caution is that Jeff was in his early thirties when his acid reflux began. Right before he was diagnosed with GERD and the hietal hernia at 47 he was having severe chest pains after eating. Also he would wake up in the night choking, we thought it was from snoring, now we know it was acid hitting his throat. The day they found the hernia we actually went to the ER because he thought he was having a heart attack. After the hernia repair he no longer had acid reflux, or he couldn't feel it, sadly it wasn't until food began to stick that they found the tumor.
Here is my advice, go to a major hospital and tell the GI doctor there that you are concerned about EC and want to know if you have Barrets esophagus. Ask for an endoscopy with biopsies to look for high grade dysplasia and a ct scan...you should have one for the hernia. I would also ask Ida Nissen Fundoplication would help with your condition.
My prayers are with you,
Niki0 -
48 years youngFireIce said:Thank You
Hey Niki,
Thank you so much for starters for your response! I had the scope done, and looking back at the results I don't think they even biopsied, so that is not good. I will ask about a CT as the only test I have had has been the scope and an esophageal motility test. How old was your husband if I can ask that? And what kind of sypmtoms? The same as mine?
Thank you,
Russ
Hi Russ,
My husband was 48 when diagnosed, I know you are younger. My word of caution is that Jeff was in his early thirties when his acid reflux began. Right before he was diagnosed with GERD and the hietal hernia at 47 he was having severe chest pains after eating. Also he would wake up in the night choking, we thought it was from snoring, now we know it was acid hitting his throat. The day they found the hernia we actually went to the ER because he thought he was having a heart attack. After the hernia repair he no longer had acid reflux, or he couldn't feel it, sadly it wasn't until food began to stick that they found the tumor.
Here is my advice, go to a major hospital and tell the GI doctor there that you are concerned about EC and want to know if you have Barrets esophagus. Ask for an endoscopy with biopsies to look for high grade dysplasia and a ct scan...you should have one for the hernia. I would also ask Ida Nissen Fundoplication would help with your condition.
My prayers are with you,
Niki0 -
Another Opinion NeededFireIce said:Thank You!
Hey Sherri,
Thank you so much for your response! So far all I have had done was an Esophageal Motility test which showed I have almost no pressure left along the entire Esophagus. And then the scope, which all they said was that I have a Hiatial Hernia present. They took no Biopsies and I was currently on my medication at the time of the test, which apparantly can skew the results??!! I have had no other tests. I am throwing up a bit more often now. I would say around once a week I will have a really bad day with double the medication combinded with some extra ant acids off the shelf and still be really sick all day, or end up throwing up. There does not seem to be a relation so much to what I eat, it just seems if it's a bad day from when I wake up for my reflux, then by the end of the day I end up sick. I have pushed to see a GI specialist in our area, however nobody is contacting me any time soon. Have they missed something?? Your post is very worrisome??
Thank you,
Russ
Hi Russ
Nice to meet you. I was a caregiver for my dad. He passed in March 2010 with EC and mets to the liver. You definitely need to get a second opinion and more tests done. You should not be suffering the way you are! You need to get a cat/pet scan done, and a staging. Or..it could just be gerd or hiatal hernia. But...you need to know! keep in touch with us.
Tina in Va0
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