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Missed EC diagnosis

crystalbay
Posts: 39
Joined: Aug 2010

I'm a 68-year old 1.5-year survivor of Stage 3 EC. I've had five clean PET scans so far after the Ivor Lewis surgery at Mayo. What I want to write about is the fact that I went several years experiencing intermittent heart pain prior to my diagnosis. The docs ordered every possible test for heart disease and came up with nothing.

The year leading up to my EC diagnosis, I had intermittent problems swallowing pills. Finally, an endoscopy revealed cancer. I later learned that there was such a thing as
SILENT GERD, the culprit in my case. What I think all doctors and others should know is
that what feels like heart pain or angina may very well indicate silent reflux.

Had my heart pain resulted in an endoscopy years ago, it would never have developed into
cancer.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

I experienced the same things before my diagnoses in 2007 with stage 111 Ec.I had silent Gerd also, even though I would have indigestion. My doctor would send me to the heart doctor when I experienced very bad chest pain and hurting between my shoulder blades. I was even in the hospital once with chest pain, but all test on my heart was always negative. The doctor never followed through to see why I would hurt and I would start feeling better so I didn't either.
I have a friend experiencing severe acid reflux. At her appointment with gastrologists today, she was told he is going to treat her with three different medicines and if this doesn't help, then he will scope. He said this is the only way the insurance will pay. I don't know why doctors or insurance companys had rather treat the unknown instead of finding out the cause and then treating.
Thats also why so many of us ended up in the last stages of Ec. Thankfully mine was found at stage 111.
I worry about my daughter because the doctor is refusing to scope, even though I am a survivor of EC. Her doctor says there is nothing to worry about unless her food sticks. Wonder what medical school she went to?
Thanks for posting. It gave me a chance to vent again. I'm hurting for all our friends lately that have lost the battle, and I get so mad at the medical doctors for what I feel is neglect.
Sandra

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I have a persistent cough and went to the doctor about it who said it was probably allergies but she did not take it seriously. I went to another doctor who said it is caused by acid reflux. I don't feel heartburn, but I started taking Prilosec at her request but the cough persists. In November, my mom was diagnosed with Esophageal Cancer. During my mom's endoscopic ultrasound the doctor told me I should be screened. I told my primary care physician and she ordered the endoscopy, but I had to call another hospital to schedule it and they called me back and told me I needed to have my doctor send over more history to justify the need for the procedure. So I know what you mean, Sandra. It is not easy to get this test done, and it is extremely frustrating.

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

I guess I was very lucky. I've been seeing a GI doc regularly for almost 10 years for another problem unrelated to EC. When I was 55 he said I should have a colonoscopy because I'd never had one and it was time. When I woke up from that he told me that he had decided as long as he had me on the table to do an endoscopy too, because I'd had intermittent and infrequent GERD for several years, and he found I had Barretts Esophogus. That put me on a trainnual cycle of endoscopies, and last August they found my EC.

I can't imagine why PCP's are so poorly educated regarding the symptoms and dangers of EC, or why even GI docs seem reluctant to do endoscopies. It's the only damn way to find this beast!

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

Your doctor took good care of you, and it's good to hear that there are some AWESOME docs out there who know what's going on. I'm so glad it was found early for you!
Steph

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

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

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Hi Angie
I agree with you. I am also involved with ECAN.ORG. They send me info packets every March. I pass the info out to all the local drs offices, as well as the Gastro drs offices. I wear my periwinkle bracelet daily. Anything and Everything to pass the word along. My dad passed from EC in March 2010. Thank you for passing the word, and best of luck to your husband and son. Keep being that squeaky wheel.
Tina in Va

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Your son should find a different doctor!

There are sometimes constraints like an HMO or, as was my case for 22 years, military clinics where they tell you who your doctor is going to be. But other than that, at the end of the day doctors are contractors who work for US (via our insurance), and if we think they're doing something medically inappropriate or if we just don't like them, we should feel free to "fire" them and find another doctor. Not "doctor shopping" for better prescriptions, but just someone you're more comfortable with. It's funny how our culture is toward them, that very few of us feel comfortable doing that.

Bob

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

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

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

Turns out I have a hiatus hernia in the esophagus, mild distal esophagi's (reflux induced) and possible short-segment Barrett's esophagus noted. Multiple biopsies taken. So all the warning signs are present. Now I have not had any real symptoms other than a persistent cough, and the cough was not even that bad. If it weren't for what I learned from my mom's situation, that I would have even had this procedure. So I did my part for April (Espophageal Cancer awareness moth) and had my endoscopy.

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Sandra,
just saw your note. That is absolutely insane. Your daughter absolutely should be scoped. Get her past the gatekeeper. I'm sure your GI dr. would support a scope. Keith's whole family go scoped after his dx. This is shameful. Be a squeaky wheel.
Cora

cher76's picture
cher76
Posts: 302
Joined: Nov 2010

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

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

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

Freida
Posts: 191
Joined: Nov 2011

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

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

I had Barretts for 7 years. I only got scoped every 3 after I was diagonsed, but that was an insurance decision, not a medical one.

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

I also had barretts but was fortunate enough to be in a research study that wasn't dependent on insurance and was able to scope me every six months as they deemed medically necessary.

Dave

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

After Don had his heart attack in 1996 - his heartburn just went away - so we chalked it up as that it was more likely angina (sp?). Looking back now - I cannot help but wonder - what if it was heartburn and it was just a coincidence that it stopped at the same time he had the heart attack? Hindsight - wth?

Smeigel
Posts: 3
Joined: Jul 2011

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
Posts: 3
Joined: Jul 2011

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

Bermudagirl
Posts: 120
Joined: Jun 2012

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...

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

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

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

I had an endoscopy and colonscopy together in August of last year with Barret's diagnosed by a thoracic surgeon, and NO biopsies. Had the endoscopy redone by a gastroenterologist in October, discovering a malignant walnut sized tumor. Could it have grown from non-visible to walnut sized in just three months? I don't know, but it seems unlikely. Of course, now I'm stage IV. More fun than people should legally be allowed to have...

--Jerry

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

From your post it sounds like esophageal cancer is not always caused by acid reflux...if Jim's was on the outside and grew in, right? My mom's was clearly from acid reflux that turned into Barrett's and then progressed to ec.

tmpage1273's picture
tmpage1273
Posts: 93
Joined: Feb 2012

I've got gastritis and in past few months I've bad severe back Pain between shoulder blades and hiccups more frequently. My GI (2 diff ones) didn't seem worried about it. But after reading this, I'm scared. I dont have reflux tho. I take 60 mg of dexilant a day.

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