Missed EC diagnosis

My husband suffered from
My husband suffered from reflux for years, and then was diagnosed with sleep apnea. Once he started using his C-pap machine he never suffered from reflux again, or so he thought. When he was diagnosed with stage IV EC in Oct. of 2010, the tumors were so extensive that the doctors told us his cancer probably started about 8 years before. He never had any heartburn symptoms after he started using the c-pap, and the doctors called it silent gurd. On the MD Anderson website there is a video about EC that says one symptom is reflux that suddenly goes away. One of the few symptoms Rickie had was pain between his shoulder blades. Early detection is the key for a good prognosis. Both of our older children suffer from heartburn, and when our son asked Rickie's gastro dr. about why endoscopys are not routinely performed as colonoscopys are the doctor said it was not cost effective. Where we live I have felt that the doctors are not as savy about EC and it's causes and symptoms as they should be, but maybe that is just not here but everywhere. That is why it is so important to get awareness of EC out there, not only to the public but to the medical community as well.
Cheryl
Wife of Rickie, dx stage IV EC, Oct. 2010
Mets to bones and brain
Lost the battle Jan. 4, 2012

AngieD said:

There are WAY too many
There are WAY too many uninformed folks out there!! My husband has Stage IV EC and our son has had GERD, but his doc refuses to order an EGD.
Everyone, PLEASE: April is Esophageal Cancer Awareness Month Go to:
ecan.org
and order the informational packet. It contains brochures, posters, and bracelets that you can post in appropriate locations and give to doctors. I ordered mine last Mon and received it 3 days later.
Angie

Where to get an informational packet?
I cant find on the ecan.org site where to order an informational packet. Can you help me?

cher76 said:

My husband suffered from
My husband suffered from reflux for years, and then was diagnosed with sleep apnea. Once he started using his C-pap machine he never suffered from reflux again, or so he thought. When he was diagnosed with stage IV EC in Oct. of 2010, the tumors were so extensive that the doctors told us his cancer probably started about 8 years before. He never had any heartburn symptoms after he started using the c-pap, and the doctors called it silent gurd. On the MD Anderson website there is a video about EC that says one symptom is reflux that suddenly goes away. One of the few symptoms Rickie had was pain between his shoulder blades. Early detection is the key for a good prognosis. Both of our older children suffer from heartburn, and when our son asked Rickie's gastro dr. about why endoscopys are not routinely performed as colonoscopys are the doctor said it was not cost effective. Where we live I have felt that the doctors are not as savy about EC and it's causes and symptoms as they should be, but maybe that is just not here but everywhere. That is why it is so important to get awareness of EC out there, not only to the public but to the medical community as well.
Cheryl
Wife of Rickie, dx stage IV EC, Oct. 2010
Mets to bones and brain
Lost the battle Jan. 4, 2012

Another silent herd
My husband Keith was also a silent Gerd sufferer and had some symptoms for six weeks which prompted him to ask to get scoped. He got scoped faster because he is a doctor and he did have a tumor and path report showed evidence of long standing Barrretts and he never felt anything. His stage wasnT2n0. I wonder if there is something unique in silent disease and if they are more
Ikely to develop ec.
cora

Cora11 said:

Another silent herd
My husband Keith was also a silent Gerd sufferer and had some symptoms for six weeks which prompted him to ask to get scoped. He got scoped faster because he is a doctor and he did have a tumor and path report showed evidence of long standing Barrretts and he never felt anything. His stage wasnT2n0. I wonder if there is something unique in silent disease and if they are more
Ikely to develop ec.
cora

Bill also never suffered
Bill also never suffered from heartburn. He was diagnosed with barrets when they were trying to figure out why he was anemic and did a colonoscopy followed by an upper GI scope when they found no problem in the colon. The doctor put him on nexium and said that should help repair and that he should have it rechecked, but he really did not emphasize how important it was to be rechecked regularly - in fact he really understated it. When he was due another colonoscopy we scheduled a scope too. Honestly, we were just excited because we thought he could come off the expensive nexium. The T3N2M0 EC diagnosis completely shocked us as he had no symptoms.

We have since been told he should have been checked every 6 month once he had the barrets diagnosis. Wish we had known it before.

Freida

cher76 said:

My husband suffered from
My husband suffered from reflux for years, and then was diagnosed with sleep apnea. Once he started using his C-pap machine he never suffered from reflux again, or so he thought. When he was diagnosed with stage IV EC in Oct. of 2010, the tumors were so extensive that the doctors told us his cancer probably started about 8 years before. He never had any heartburn symptoms after he started using the c-pap, and the doctors called it silent gurd. On the MD Anderson website there is a video about EC that says one symptom is reflux that suddenly goes away. One of the few symptoms Rickie had was pain between his shoulder blades. Early detection is the key for a good prognosis. Both of our older children suffer from heartburn, and when our son asked Rickie's gastro dr. about why endoscopys are not routinely performed as colonoscopys are the doctor said it was not cost effective. Where we live I have felt that the doctors are not as savy about EC and it's causes and symptoms as they should be, but maybe that is just not here but everywhere. That is why it is so important to get awareness of EC out there, not only to the public but to the medical community as well.
Cheryl
Wife of Rickie, dx stage IV EC, Oct. 2010
Mets to bones and brain
Lost the battle Jan. 4, 2012

ec
So sorry to hear of your husbands passing. My husband Steve was diagnosed last june and died last september 10,2011. He had heartburn for years and was never told of barretts esophagus. In his lifetime he only had one endoscopy and that was 7 years ago. It haunts me that at that time they , might missed the barretts, because he had a very large hital hernia and an irregular zline with gastritis. I think he should have been rescreened, but he was not. The medical community has an obligation to inform the public about this terrible disease that is on the rise . Doctors also need to be better educated
on esophagel cancer and its symptoms. My husband was only 56 years old. If someone had looked, he could have been treated.
MARIE
WIFE OF STEVE
METS TO LIVER

Smeigel said:

ec
So sorry to hear of your husbands passing. My husband Steve was diagnosed last june and died last september 10,2011. He had heartburn for years and was never told of barretts esophagus. In his lifetime he only had one endoscopy and that was 7 years ago. It haunts me that at that time they , might missed the barretts, because he had a very large hital hernia and an irregular zline with gastritis. I think he should have been rescreened, but he was not. The medical community has an obligation to inform the public about this terrible disease that is on the rise . Doctors also need to be better educated
on esophagel cancer and its symptoms. My husband was only 56 years old. If someone had looked, he could have been treated.
MARIE
WIFE OF STEVE
METS TO LIVER

Reading these posts is troubling! We as patients and caregivers need to be our own best advocates. If an insurance company or doctor denies care, take it up the chain of command! I sometimes think that we put doctors on pedastals thinking that they are the experts and should defer to them. Of course dealing with bureaucracies is never easy, but if your life is potentially at stake then make some noise.

I may be dealing with a misdiagnosed case myself, which kind of adds insult to injury. Dave had a colonscopy/endoscope on April 27th. Biopsies were taken, and reported negative. However, his gastro guy felt like he didn't get a good enough look at part of the study, and asked him to come back in 5 weeks to repeat the scope. That was done on June 1st. At that time he took more samples to biopsy. He also recommended that an ultraound be performed, but did not schedule it, had Dave do it himself, and it ws slated to happen on June 22nd. On June 8th he received the news that a "fragment of cancer" was found, which led us to believe that this may be a case of early detection. The gastro guy then took the initiative to order the ultrasound, and that took place yesterday. June 14th. When we went for the ultrasound the doctor at the hospital was led to believe that he would be checking for early stage cancer, and was shocked to find the 2.5 Stage III lesion! How on earth was that missed? That is the 64,000 dollar question, and one that I want answers to. It seems like a case of negligence to me, but I am willing to hear from the doctor that performed the initial scope and see what he did or didn't do.

I'm not a shrinking violet when it comes to dealing with doctors. I had my own cancer 10 years ago, and my now 23 year old daughter was born with a single ventricle so I've endured 2 open heart surgeries for her as a child, and numerous other medical procedures. I've learned that docs are just like you and I and they are not infallible. But I will hold them accountable for standards of care that should not be missed. So on top of dealing with the stress of chemo and radiation prior to surgery in September, we may be in lawyers' offices as well. Oh my...

Bermudagirl said:

Reading these posts is troubling! We as patients and caregivers need to be our own best advocates. If an insurance company or doctor denies care, take it up the chain of command! I sometimes think that we put doctors on pedastals thinking that they are the experts and should defer to them. Of course dealing with bureaucracies is never easy, but if your life is potentially at stake then make some noise.

I may be dealing with a misdiagnosed case myself, which kind of adds insult to injury. Dave had a colonscopy/endoscope on April 27th. Biopsies were taken, and reported negative. However, his gastro guy felt like he didn't get a good enough look at part of the study, and asked him to come back in 5 weeks to repeat the scope. That was done on June 1st. At that time he took more samples to biopsy. He also recommended that an ultraound be performed, but did not schedule it, had Dave do it himself, and it ws slated to happen on June 22nd. On June 8th he received the news that a "fragment of cancer" was found, which led us to believe that this may be a case of early detection. The gastro guy then took the initiative to order the ultrasound, and that took place yesterday. June 14th. When we went for the ultrasound the doctor at the hospital was led to believe that he would be checking for early stage cancer, and was shocked to find the 2.5 Stage III lesion! How on earth was that missed? That is the 64,000 dollar question, and one that I want answers to. It seems like a case of negligence to me, but I am willing to hear from the doctor that performed the initial scope and see what he did or didn't do.

I'm not a shrinking violet when it comes to dealing with doctors. I had my own cancer 10 years ago, and my now 23 year old daughter was born with a single ventricle so I've endured 2 open heart surgeries for her as a child, and numerous other medical procedures. I've learned that docs are just like you and I and they are not infallible. But I will hold them accountable for standards of care that should not be missed. So on top of dealing with the stress of chemo and radiation prior to surgery in September, we may be in lawyers' offices as well. Oh my...

same here
My husband too was a silent gerd and had 2 months of indigestion. He is also a dr. He went for colonoscopes and would have had ample opportunity to get an EGD but there were absolutely no clinical signs to warrant it. When he had 6 weeks of GERD symptoms finally and tried treatment and failed, he immediately sought a scope. 4 cm tumor stage 2a. I think his doctor "spidey sense" got him in sooner, but still even us medical people had no warning and there are not protocols for screening.

Cora