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Acid Reflux Treatment

mam132
Posts: 20
Joined: Nov 2011

While speaking with my oncologist I mentioned that I was concerned that nobody has discussed a change in treatment that I receive to deal with my acid reflux. I have been using previcid for about six years and obviously it did not work or I would not have cancer. I was never advised that acid reflux could cause cancer and thought all was well because I had no symptoms. The Oncologist said I should speak with my family doctor for further advice and I did just that. She said I sould speak with the G.I. Doc. Needless to say, I am very frustrated. It's like ok your stage 4 so why would you worry about that. Well I'lltell you why. I have three people that I know that have lived 10 and 11 years since they were diagnosed with stage 4 cancer. One of these fella's is a esophageal cancer patient.

My thought is this. I am doing extremely well with chemo so far. I will have a ct and pet scan soon, however with me, I know something is going well because I have my vision back in my eye and as of last month had no other signs of turmors anywhere else in my body. Why are they not concerned about what caused my esophageal cancer? I have learned more on my own than I have from Doctor's.

Thank You in Advance

Mike

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

Mike, This is what bothers us all on this site. It's hard to understand why doctors treat acid reflux so casually. That's why I start trying to educate people when I hear them talk about indigestion. Most people want to listen to the doctor and not us. We all need to be more responsesable for our own health and we have to keep trying to get the word out there.

I didn't suffer from acid reflux ( i didn't think)but I did have indigestion a lot. My doctor was never concerned until my food stuck, and lucky for me it was stage three.
It's unnerving to think of the times I complained and a scope was never mentioned, and I, like you never heard of EC, so I took the prescibed drugs and trusted my doctor.

The pills mask the symptoms so well,that I believe that's one reason it reachs the high stages.

Keep the positive attitude.

Sandra

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

I've had indigestion for years, but no signs of acid reflux, so I never bothered with Prilosec or Prevacid or any of those, but I did go through a big bottle of Tums per month.
When I started with the dysphagia, my primary MD never had EC come into mind at all, and neither did I. I figured it was a hiatal hernia. So he sent me to a thoracic surgeon who did an endoscopy (and this happened 3 months after the initial symptoms). And the turkey didn't even do a biopsy. He just noted red, friable tissue and diagnosed Barrets. This was in August. He set me up with a visit to a gastroenterologist, but because it didn't seem particularly threatening, the visit wasn't scheduled until October 11th. I was very fortunate that the GE had an early opening on October 10th. I went in then, talked to him, explained my story and he said, "You need a real endoscopy. How soon are you available?" I mentioned that my original appointment had been for the next day, so they quickly set up and endoscopic procedure for the next day, and after he looked he said, "You have a tumor as big as a walnut, and we took a biopsy, but I'm afraid it doesn't look good." And sure enough, it came back malignant.
He was quite upset that the primary physician had not sent me to a gastroenterologist to begin with, and when I visited my doctor a couple of weeks ago, I gently remonstrated with him, and said, "Larry, if someone comes to you with similar symptoms to mine you MUST send him to a gastroenterologist. A thoracic surgeon is NOT the right person. I'm three months behind where I should be in treatment!"

--Jerry

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

I'd like to know why some of us can be on ppi's for years but still get EC, yet when treatment is finished still get told to take ppi's. If ppi's didn't stop you from getting EC in the first place, what's the point of taking it again after treatment?
Danielle

mam132
Posts: 20
Joined: Nov 2011

I just read this is one of the most dangerous cancers and yet very few Doctors are aware of what to do. There are so many different types of treatment for the same disease it's not funny. What pisses me of to no end is that had I known when I was prescribed previcid for "Gerd" that I should be scoped, I would have done it. I will continue to stay positive and pray that this stuff doesn't go any further than my eye and esphogas. God give us strength to be the educators of this cancer. I would still like to get my big hands on the Oncologist from the Cleveland Clinic who said I had lung cancer and I later learned that his opinion was based on statistics. The man had me go home and tell my kids I would die in 2 to 4 months. He ruined my family and it has taken every ounce of courage that I have to overcome his statements and get my family back on track.

As a Police Officer I have handled two suicides where people were told things like this. They need to be careful. Ok no more whining for me. Back to enjoying my life.

Mike

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I agree, Mike. My mom (Stage 3) suffered from reflux years back. Now she has EC. Recently (the last year or so), I have been struggling with reflux. This has me worried, so I better nip it right away!

(My hubby is in law enforcement, too.)

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

My second visit with the oncologist after the initial PET scan was, "I'm so sorry. There is nothing we can do for you but keep you comfortable."
After pinning him down, he said, "You have between three months to two years." Then after I said I was getting a second opinion, he ordered an MRI. I had 4 that day. Results, no metastasis, and I was bumped from Stage IVb to Stage III.

I asked him (before the MRI) about the endoscopic ultrasound. "No sense wasting time on that, if you are Stage IV."

I refused to accept THAT and I still haven't had a test to see if I'm HER2 positive. But that WILL be happening.

I could have just accepted the initial diagnosis, and dove in a hole and pulled it in after me. People do that. Suicide??? I can see someone who is already depressed having a terminal diagnosis pushing them off the deep end.

Dig and dig and fight. Knowledge is power, and the you need to be on the cutting edge of YOUR disease.

--Jerry

MomhasStage4EC's picture
MomhasStage4EC
Posts: 39
Joined: Jul 2011

The acid reflux concerns me too... my mom passed from ec and had acid reflux as long as I can remember and I have it now too. It really scares me because I know what can happen. But how can it be prevented?

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

With the prevalence of EC in Japan, I understand they get an endoscopy every year. It doesn't take that long, and if you have acid reflux, it's rough on your esophagus so the possibility is there. Have it done by a gastroenterologist who knows what he's doing though. For "cat's sake", don't wait until you have trouble swallowing.

--Jerry

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I had some BB pain and so on my last colonoscopy they did an endoscopy. All clear.

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

It's funny when a doctor will tell a patient who suffers (my daughter) from daily acid reflux, not to worry unless her food sticks. Where are the doctors at? Through experience, we know that it is usually bad when this happens.Aren't the doctors aware of the danger? Unfortuately because of her insurance, my daughter has to be refered. I told her to stay on thir backs and insist on a scope. By being on this site. it seems we need to educate most of the doctors that are practing medicine.
Sandra

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