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What caused your EC?

LeeinLondon's picture
LeeinLondon
Posts: 108
Joined: Aug 2011

I would love to hear everyone's thoughts on what they believe might have "caused" their EC. We've all asked ourselves this question a million times, and struggled with faith, and guilt and everything in between; Obviously medical history and lifestyle can be strong predictors of future illness, and this group would be a treasure trove of anecdotal data to see if we have anything in common...

My stats are.. I'm 5'10, currently about 188, floated around 200-205 most of my adult life. Stocky build, my ancestry is originally Prussian/Scottish, so I'm german/scottish. Prone to flushed skin, carry most of my body fat on my abdomen.

Overall meat and potatoes diet, lots of carbs, proud carnivore, blood tests over the years show no issue - blood pressure slightly low my whole life - slightly anemic

Pack-a-day smoke for approx 30 years

No other significant health issues ever. Only surgery was tonsil removal at 17.

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

My husband is a meat and potatoes man too, very few vegetables’ or fruit. He had reflux since he was in high school before weight became an issue the last 10 years or so. He was 49 at diagnosis. For the most part he does not drink, he does not smoke any. Cancer does run in his family. Mom, Dad and sister have all had cancer.

dodger21's picture
dodger21
Posts: 83
Joined: May 2011

Hi Lee,
It is great to here from you. Daisylin and you are an inspiration.
I have a theory ( nothing backed up by medical opinion) as to why I got it.

But first, I am 35, female, 173cm and 83kg (was 93 prior to it all). I never had reflux as an adult, never had heartburn, addicted to chocolate, only occasionally ate fruit but ate a bit more vegetables. My paternal grandmother died of EC in the 1980's.

My mum would always tell me I had the worst colic as a baby. She would always walk me round and round the snooker table and do midnight drives over gravel roads to try and get rid of the colic. No medicine seemed to work.

I've always wondered whether colic as a baby was the start of oesophagus problems that led to barretts then ec.

Would love to know if anyone else had bad colic.

Danielle

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

The one thing that's been bouncing around the back of my brain is sciatica. Lee had it really bad a few years ago, to the point where he could not even walk for a few months. I've noticed that a few people have mentioned that they had the same, either before or during treatment. Not sure if it could be related or not, just a thought. It's been such a random thought I've never even discussed the possibility with him. It just seems odd that so many on this site have suffered sciatica pain. Lee did not mention it in his post above, just thought I'd add that on his behalf.

Chantal

LeeinLondon's picture
LeeinLondon
Posts: 108
Joined: Aug 2011

Yes Chantal, that's a good point. I'd never thought of the connection. I had crippling pain down the back of my right thigh and virtually couldn't walk for 2 months; traditional "sciatica" was kind of ruled out, but even TENs pain reduction device did not help. Spinal x-rays pretty much normal for a middle-aged guy. I also had (I think) some kind of arthritis symptoms in my hips/legs around the age of 10 that made walking painful.

NikiMo's picture
NikiMo
Posts: 344
Joined: Jul 2011

My husband was completely healthy until 1 and a half years ago. He never went to the doctor, never had colds, just a happy go lucky guy. Now he did have heartburn and would pop tums, I told him a few times you should get that checked out because it appeared to be an annoyance to him. Then the sciatic pain started about a year and a half ago. He was diagnosed with bulging discs and given pain mends, they did nothing so he went to a chiropractor. Pain got better, but at the same time he started having severe pain after eating in his chest/shoulder area. We ended up going to the ER one morning because he thought he was having a heart attack. They quickly ruled out cardiac problems, but they admitted him to the hospital. They ran many tests, and what they came up with was a parasietal hernia moving into the chest area causing pressure and pain. This had been the cause of the acid reflux and the chest pain, they suggested speaking with a surgeon. I asked the doctor at the time about the sciatic pain, that I didn't understand, it just seemed like all of sudden all of these things were happening. His answer was, your husband is getting older these things start to creep up. Fast forward to meeting the surgeon and having a number of test, including a endoscopy and biopsy, they ruled out any high grade dysplasia and h. pylori. He had a nissen fundoplication surgery to repair the hernia. Everything was going great (well after he learned how to use his new smaller stomach, which wasn't too bad), then about 7 months post surgery food started to stick. He went to the surgeon, she advised he get an endoscopy. Had that done with a biopsy, since now he had severe esophagitis. And that is how they found the EC. So in under a year my husband went from having sciatic pain, to having a hernia repair, to stage 2b EC. No barrets was ever discovered during this time. Blows my mind really. He is not a smoker, drank rarely, but like I said had acid reflux for many years. What baffles me is that he was never warned to look out for barrets or EC after having the hernia repair. They didn't even tell him he should be scoped again. Thank God for the new GI doc he went to May, who knows what would have happened if another doctor in my opinion missed it.

So after this long and rambling message, I don't know how sciatic pain fits into the mix, but for us it is how the health issues started.

Niki
wife of Jeff T2N1M0

hopper52's picture
hopper52
Posts: 117
Joined: Apr 2011

I don't know why I got EC although my lifestyle probably was a contributing factor. Heavy drinker and smoker for 40 years but from what I read smoking is more of a squamous cell thing as far as the esophagus. I did suffer from acid reflux and popped a lot of Tums which always seemed to work better that Zantac, Pepcid or any of those other OTC antacids. Over the years the reflux got to be less and less of a problem, especially after I stopped drinking. My diet was fine after marriage......prior it was fast food. After marriage lots of meat and potatoes. Never have been much on fruits and veggies. Lots of sweets. And cheese? Oh yeah...lots and lots of cheese.

Tonsils out as a kid. Colostomy and resection in 2003. Hernia surgery in 2008. Right coronary stented in 2010.

I kind of always figured if I was going to get cancer it would probably be lung cancer due to smoking, but this EC thing kind of blindsided me.

Michael Daniels (Originally staged T3N0M0.....now TBD after a biopsy of a suspicious lymph node near my left clavicle)
Brandon, Florida

Laura23
Posts: 83
Joined: Jun 2011

Luis has had acid reflux for probably 20+ years. He started taking Zantac when it was a prescription and just continued when it moved to OTC. Every once in a while, he would take Alka Seltzer because the Zantac couldn't control the reflux. About a year ago, it started getting worse and he started taking the Alka Seltzer every day. Then, late last fall, he said he could start to feel the food after he swallowed it move down into his stomach. He said it didn't hurt, but just that he could feel it. He knew then that something was wrong. In January, he spoke to a doctor friend (Luis works in the diabetes field) and this doctor recommended taking omeprazole for 2 weeks. If it didn't get better, to go see his family doctor. Of course, it got better while he was on it, and got worse again after he stopped taking it. Instead of going to see the doctor, he took omeprazole for 2 more weeks. When it didn't help, he scheduled an appointment with the doctor. This was in February. She recommended an endoscope. He put it off because he was busy at work. He didn't see the GI doctor until April and only then because he had an incident where the food got stuck. That scared him. At the consult the GI doctor said it was probably allergies or at worse an ulcer. I think even he was surprised that it was cancer. They also did a colonoscopy at the same time, and he had a few polyps removed, one of which was quite large. He will need to get another colonoscopy in three years.

No one ever talked to us about Barretts (which Luis has a long section of) or even the possibility that acid reflux could cause cancer. He had never been scoped before this. During the staging process they also found he has a hiatial hernia. Don't know how long that has been there either.

He was always a meat and rice (not so much potatoes) guy and never ate much fruit or veggies. By the way, he grew up in South America and moved to the US when he was 18. After the cancer diagnosis, we learned he had an uncle who died from this probably in the 1970's. He also has one brother with Barretts and another brother with colon polyps that need to be removed about once a year.

So it seems as though genetics may also play a role for Luis.

Laura
Wife to Luis
Dx 4/11/2011 T3N1M0

paul61's picture
paul61
Posts: 1104
Joined: Apr 2010

Lee,

I was 61 when I was diagnosed. I was about 5' 5" tall and weighed about 150 lbs. In general I was in excellent health, physically active, and ate a relatively healthy diet.

I have had a hiatal hernia since I was about 30 and had acid reflux since I was about 25 years old. I sort of got used to occasionally waking up about 2 AM with heartburn. I would get up pop about three Tums and go back to bed.

I discussed it with my doctor every few years when I had my annual checkup and they would ask if Tums relieved the symptoms. I would say yes, and that was the end of the discussion.

It was not until I started to suggest to my doctor that I had a sensation of food getting stuck and difficulty swallowing that I was sent for an endoscopy that produced the diagnosis.

I have heard some people suggest that EC is lifestyle related but I think lifestyle applies more to squamous cell carcinoma rather than adenocarcinoma. I think at least in my case it was more related to years of esophageal acid reflux.

The general theme I have observed in our forum over the last couple of years is adenocarcinoma at the esophageal gastric junction; history of acid reflux, diagnosis following reported difficulty swallowing.

The Esophageal Cancer Network seems to support that history as well in their awareness packets. They are an excellent source for information on what is happening in EC research. Their web site is : http://www.ecan.org

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Nick is 48 and healthy - except for the EC. He was the picture of health until he began the rads/chemo. Odd how something to fix you breaks you down....

He has had acid reflux since 18 or 20. Began taking Previcid once it became OTC. No surgeries, no sciatica, no family history of EC. He has been a pack a day smoker for 30+ years, uses recreational marijuana, and is a very light drinker. He is a Mountain Dew addict and for many years would have as much as a 6 pack a day. He's a meat & potatoes guy, and loves chocolate as well. The limited sugar intake following surgery could be a challenge, but we will meet it :)

During my scope yesterday (clear except for a confirmation of reflux and hiatal hernia) the doctor mentioned that both smoking and carbonated drinks will loosen the sphincter muscle between the esophagus and the stomach making it easier for acid reflux to go up. Also late night meals - less than 3 hours before bed, which we are very prone to - make acid reflux more likely.

If lifestyle is a contributor to EC, I would guess that it's the lifestyle contribution to reflux. I just wish that the OTC meds would have some sort of information saying that EC is a very real possibility and to get checked out. I never knew....

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Good question. I had occasional acid reflux since my 20's. Diagnosed at age 57. Haven't smoked in years. One to two drinks per day. Farmer, dusty jobs at times. Food started lodging, scoped early, Stage II,N1M0. 18 months NED. Very grateful! Best of luck to all.

Gerry

Joel C's picture
Joel C
Posts: 168
Joined: Mar 2011

I ask myself that question multiple times a day. I’ve never smoked in my life, I mean I have never even taken a drag off a cigarette, never suffered from acid reflux. The only time I’ll drink alcohol is on the weekend and even then one or two beers, three at the most. Both my PC and oncologist came up with the exact same answer when I asked them “bad luck”. I guess I’ll go with that.
Joel

Bobs1wife's picture
Bobs1wife
Posts: 153
Joined: Sep 2010

My husband, Bob, age 57 at diagnosis, has had reflux as far back as high school. He always had a bottle of Tums with him and I carried them in my purse in case he ran out. He also has degenerative spine and has had a couple of herniated disks. Also had sciatia. He is a new home contractor and framing carpenter by trade, so I have wondered about all the dust he has been exposed to over the years and if it could be a factor along with the reflux. He is a meat and potatoes guy, but the strange thing is that in the months prior to his diagnosis he was consuming everything in sight that was sweet. Cookies, donuts, candy, were all like he couldn't get enough of them. I couldn't figure it out since this wasn't like him at all. Now I wonder if it was the cancer that made him crave it. Especially learning about PET scans and how they uptake on the glucose. No other significant health issues.

Since so many people have no history of reflux I wonder if some of them have silent reflux like me and it just went undiagnosed until the EC developed. I guess that is why it is called "silent". I didn't know I had reflux until recently when I went to the doctor with sinus issue. I was told it wasn't sinus problems, but reflux. I have recently been doing a lot of studying and find it is LPR although they never gave me that exact diagnosis. But had anyone ask if I had reflux before that I would have said no. Unable to totally ignore some of the subtle symptoms I ask for an endoscopy and was given the diagnosis of hiatal hernia with esophagitis caused by reflux. I didn't know I had either one until the scope. I have said before that I think upper endoscopies should be a routine proceedure. GI doctors should be doing them along with colonoscopies so people with no symptoms can treat the reflux that they don't even know they have. Linda

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
I had achalasia fancy word for strictures in the esophagus that was repaired when I was in my 20's. At that time, I was told I might get cancer in the future because they break open your esophagus and it is always open. So my whole life I had reflux, gerd, etc and was on meds and also got regular checkups. Three years before my squamous cell ca dx I had an EGD, they found some Barrett's and that gi dr told me I did not need another EGD for 3 yrs. So changed drs 3 yrs after that and was having trouble with food feeling stuck in the middle of my chest and when she did the EGD she found I was full from top to bottom with food stuck in my esophagus that I did not even know was there. She biopsied a couple of places but did not think they would be cancer but they were. So I had a 4 cm squamous cell ca right in the middle of my chest where I had been having the pain for awhile. I found out later 9% of people with previous achalasia wind up getting cancer, but I still haven't won the lottery yet with those odds. I did win survival so I am happy to be here it will be 2 yrs since my surgery in December and still gaining weight and eating fine and enjoying every minute of my life. Hoping that they can do more in the future to prevent the usual cause heartburn and gerd and there will be less people coming forward with EC.
Take care, good luck and prayers for all.
Donna70

Denise54's picture
Denise54
Posts: 20
Joined: Jul 2011

Hi Lee. As far as I can remember, my dad Jerry had acid reflux for YEARS. I remember he would take OTC meds that was recommended by his MD, then finally when he was diagnosed in May of this year, his MD gave him a prescription for his "symptoms".
My dad is 5'7, always around 195, a little chunky for a man of his stature. He liked all kinds of food, couldn't eat spicy though, but somewhat balanced. He was also taking high blood pressure meds for some years, but is NOT taking that anymore.
He now weighs 170, hopefully more since he's been able to eat REAL food instead of using his feeding tube which is still surgically placed, just in case we need it. He did smoke while in the military, but has quit over 35 years now.
MD stated that he developed Barrett's Esophagus after years of acid reflux. Never did the MD say to do an endoscopy, knowing for years he had acid reflux. He had to do colonoscopies yearly for a while, then he had to do them every 2-3 years after that. Besides, we never heard of esophageal cancer nor acid reflux a contributing factor to it.
I'm glad that he's been doing well with his chemo this time around. The past 2 weeks have been great, like he's normal, but that could change anytime. Our family is thankful and blessed that he's doing "okay", we're just taking things day by day, hoping for the best.
Hope you're feeling better and we'll be sending prayers your way, from Hawaii!!

Denise

annalan
Posts: 149
Joined: Jul 2011

Hi Lee, my husband Alan had indigestion for as long as I can remember. We married when I was 19 and he was 23, it was a standing joke that I must be a terrible cook as he always sucked Rennies. He was dx in 2009, aged 66, T3N1MO having gone to the doctors because his food was getting stuck and he was bringing up the frothy phlegm I've heard mentioned here often.

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

Steve noticed food getting stuck in the spring of 2010; by fall 2010 he was diagnosed with adenocarcinoma of the lower esophageal junction with stage IVb, mets to lungs with Barrett's esophagus.

Liked his drinks, meat and potatoes guy, smoked recreational marijuana, complained of heartburn only occasionally; found a hiatal hernia in 2005, high blood pressure meds since 2005 (hence the C/T scan which showed a slight hiatal hernia), gout since maybe 1998.

I understand that smoking (and I don't know about marijuana) can relax the lower esophageal sphincter. Alcohol is more of a squamous cell, I think, but his dad died of a brain cancer in 2007, so maybe he was prone to cancer.

Barrett's esophagus can mask the symptoms of acid reflux. The esophagus changes its molecular structure to protect itself from the stomach acids. That change makes the acid less noticeable and so the person may not have overt symptoms of acid reflux; although they are getting the reflux, they don't feel it.

I've noticed most of the posts read "meat and potatoes" diet. I do read that a diet high in fruits and veggies is better at staving off esophageal cancer. Though I do not wish to place blame; sometimes "stuff happens", no matter how rigidly one lives their life.

Thanks for posting this discussion, Lee.

Jo-Ann

LeeinLondon's picture
LeeinLondon
Posts: 108
Joined: Aug 2011

Hmm... thanks for writing everyone; Hardly a scientific study with so few people but yes there are similarities. It would make sense to me that if the principal trigger is an ongoing erosion of the esophageous, like acid continually splashing around, makes sense. The tissue would be less healthy in a smoker, and would be likely to mutate sooner.

Not sure what the male/female ratio of sufferers is (Any idea, William?) but I wonder if the large abdomen plays a role (snug pants, tight belts) - there's only so much space down there, so add the pressure from the abdomen jamming everything together and forcing more acid/bile up into the esophageous. Our M&P diets would certainly require more processing than a fruit/veggie diet and would generate more bile, we could also presume that fruits/veggies would provide more fibre, more healing options simply due to diet diversity, etc.

The good news is that this study quickly showed us that EC sufferers are extremely attractive, so perhaps this cursed thing is limited to those of us that are startlingly beautiful. :)

best,
Lee

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

Lee,

If you want a break down between male/female in the US you could look at the SEER web site. You can find all sorts of breakdowns there. But it is a stats web site....not very encouraging. So if you don't want to go there below is the break down.

From 1975-2008 male Incidence rate was 7.68 in 100,000 and female was 2.14 in 100,000.

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

Extremely attractive indeed! Thanks for putting a big old smile on my face Lee
Jo-Ann

fredswilma's picture
fredswilma
Posts: 196
Joined: Mar 2011

Hi Lee
I think you've hit the nail on the head, my husband is absolutely startlingly beautiful, funny word for a man, but gorgeous inside and out, perhaps the acid reflux he has had all his life contributed to his EC, maybe the hernia its a good question Lee, maybe more important is to let people know, including local GP's that acid reflux is not just an annoyance but could very well be a pre-cursor to EC. Maybe if local GP's were more aware there wouldn't be so many diagnosed at stage iv, just my thoughts.
Ann

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

Hi Lee, I had silent acid reflux. I would have indigestion, which tums would usually help. I never had the acid come up. I would experience pain in my back and a couple of times Pain in my chest that lasted a few days. At this time the dr. checked my heart and of course it was ok.Only after my food stuck was I scoped and diagnosed.I know now that the pain I had was silent acid reflux.

I don't know the ratio of women and men, but when I was diagnosed with adiocarcinoma, my dr. said it was rare in women and the drs were still trying to find out what was going on.
I had stopped smoking twenty years before and the dr. said this wasn't the reason. I did unknowingly have barrettes.

I ate meat and vegetables but no fruit. I ate a lot of sweets.I ate anything I wanted and rarely would the foods cause me to have indigestion. Because of the symptoms being so mild, it was really a shock to hear I had Ec.

It is so sad Drs wait so long to scope. My daughter, who suffers daily acid reflux, was recently told by her dr. there wasn't anything to worry about unless her food stuck. What a joke-Even drs need to be educated.

Sandra

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello Lee and welcome to you and your husband. I was a caregiver for my dad. He was dx with EC in 11/08. He had had chronic acid reflux for many many years. The drs. always treated him for acid reflux. Not one dr. saw a red flag to send him for a scope. My dad himself knew something was not right in 8/08 when he had a lot of trouble swallowing. He himself went to the gastro dr. and asked for a scope. By the time he was dx, he was at a stage IV. Too far gone, not able to have surgery, could only have chemo and radiation for palliative care. I only wish the drs. sent him sooner when it was only at a stage I. I advise anyone who has chronic heart burn or acid reflux to get a scope done at the first sign of it.
Hope this helps.
Tina in Va

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

My husband Rickie, age 55, was fairly healthy when he was diagnosed in Oct. 2010. He smoked on and off since he was 12. Always amazed me because he could go for years without lighting up and then just as easily start up again. Never smoked in the house or at work, mainly on the way to and from work the last few years. He also enjoyed a drink or two in the evenings, not daily, but 3 to 4 times a week. He suffers from adenocarcinoma EC, so that is not suppose to be a big factor, however I am sure it did not help. He suffered with reflux for years, (between he and I we use to joke that we should buy stock in Tums!)but once he was diagnosed with sleep apnea 17 years ago and began using a C-Pap machine, he never had reflux again. The MD Anderson website has some good info about EC and Barretts, and from what I read many times people think their reflux went away, when actually it is just that the lining of the esophagus has changed to the same type as the lining of the stomach, so the symptoms of reflux are not occurring, even though the reflux is still there. The doctors at MDA told us he probably had had the cancer for 8 years or so. He was a big guy, weighing around 275 lbs carrying most of it in his abdomen, and is about 5'10" tall. As you can see from our new picture, that is not the case anymore. The old picture was taken a year ago the first of August and the new one the beginning of this August. He now weighs 145 lbs on a good day. He loved food, and eat mainly meat and potatoes as well. Never touched fruit, and vegetables hardly at all. I have several brochures I picked up at MDA's learning center put out by the head and neck cancer association, and one of them mentions that eating lots of processed meats, like lunch meats, sausage, salami, as well as red meats really increases your chances of EC. Who knew??? Something else possibly in common is that Rickie had a total hip replacement at the age of 36. This was after suffering from hip pain for about 5years. There was never any injury and all the doctors could tell us about why he had this problem was that it was "bone loss". No clue as to what caused that. His ancestry is also German. He also suffered from allergies all of his life (dirt, dust, grass, etc) as well as skin allergies that he seemed to grow out of in his late 20's. I know there are doctors at MDA (as well as other places I am sure) working to find out what causes this disease, as we have participated in their surveys. We are only too happy to do so if it will help to find what causes this dreaded disease.
Cheryl, wife of Rickie, dx EC stage IV Oct. 2010

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

I agree with you about the Barrett's masking the symptoms of acid reflux. I've read that as well. sounds like MD Anderson is on the trail of all this; would love it if you find anything new to post.
And your Rickie looks quite fine I think in this new pic.
Jo-Ann

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Hi Lee,
My husband was 6' 265 in April 2011. He was diagnosed with EC on July 11 and is now down to 220. He never had any acid reflux, quit smoking in 1978 and was not a drinker. He had a big appetite and was not a picky eater at all. His biggest vice was eating candy - and lots of it. He would keep boxes in his truck, in his nightstand and in the cupboard. I've done a lot of reading about EC and it looks like sugar could be a contributor. The only other thing we can think of is the fact that he's a Vietnam veteran and was exposed to Agent Orange.
He also has sleep apnea and has had a CPAP machine for several years.

Frumpy
Posts: 6
Joined: Jul 2011

my husband smoked a lot for forty years drank a lot also when he was younger as we grew older not so much but we did enjoy wine with our dinners or a cocktail or two. He had been told he had Barrets also. My husband also hates vegetables did not eat much fruit.

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

For years, I was bugging Steve about his night eating habits. Every night while watching tv he would munch. I wonder now if his having food in his stomach and the acids working on it all night were a contributor. I'll bet it didn't help, anyway.
Jo-Ann

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Nick has a late night munchies addiction also. He's constanting snacking and often will trek to the fridge in the wee hours and snitch a bite of food on the way back to bed.

It's a solid possibility.....

Thanks for the thought,

Terry

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