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No DX but need help/advice

SimplySunshine
Posts: 6
Joined: Apr 2012

Hi. First I want to say that google searches kept leading me to this group. You are an amazing group of people.

So let me put a timeline of events out there for you.

In late 2009 my boyfriend started having severe chest pains. I took him to the ER and they preformed an EKG and other tests. All were clear and he was given an rx for prevacid.

In Feb of 2010 he went back to the ER for severe heartburn and pain. It was determined that he had sever GERD. His iron levels were dangerously low. They kept him a week, gave him a blood transfusion and scoped him. There was a biopsy also done. Everything came back clean and he was told to continue his meds.

In Nov of 2010 he went back for another endoscopy because of continuous pain and reflux. Everything on that test came back clean as well. Just a lot of inflammation. This time they upped his meds to 60mg a day, cerafate and tremedol for pain.

Come to now. He still has a lot of pain, reflux and recently his food started getting stuck. He either has to wait for it to go down or try to force it up. He even had a day of throwing up blood that had pooled above food stuck at the time. His specialist referred him to the ER. They weren't able to do anything there so they drugged him up and sent him home. Well today he was scoped again. They dilated his esophagus, took many biopsies and noted that he has an esophageal ulcer. That is it.

I want to know what to do now. I don't feel like this is getting anywhere but I don't know where to go next. His story sounds like so many here but it's not going anywhere. I am scared they will miss something or just continue to push him off. Should I trust that all of this is just GERD or continue on for more help. Where should I go? What should I do?

Thank you for reading this and answering if you do.

SimplySunshine
Posts: 6
Joined: Apr 2012

That this is just his big appointments. He has many Dr visits during these times. Always the same thing. Keep taking the prevacid. Here is some hydrocodone or tremedol. Occasionally iron if his levels get low. But everyday he is in bad pain. He throws up many times a week and generally doesn't eat much because of these issues.

To top all this off he also has times where he burps what smells like rotten eggs. Shortly after these spells he will either throw up for awhile or have the poops for awhile. I don't know if it has anything to do with all these other issues though. Just thought I would throw that out there.

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

Just in case... I've read too many horror stories of Doctors working beyond their level of competency, and not finding esophageal cancer until it was too late. My first symptom was the same as his; dysphagia, not being able to swallow the food, but having to puke it back up before it ever hit the stomach. And because my PCP was not knowledgeable, it was over 6 months until someone knowledgeable was able to diagnose esophageal cancer, but sadly, now I'm Stage IV, which means "treatable, but not curable".

A known cancer center is your best choice, and William, I'm sure will be able to tell you which one is appropriate depending on where you live.

Take care. Of the both of you!

--Jerry

SimplySunshine
Posts: 6
Joined: Apr 2012

Right now he sees a Gastroenterologist, at a digestive disease center, through our local hospital.

Sorry. I know I am full of questions.

It is frustrating that doctors dabble where they don't not understand. I am sorry for your late diagnosis.

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

Ask tons of questions!!! Of us, of your doctors, research on the Internet ( I know, that's how you found us...) By the way, a lot of stuff on the Internet is either inaccurate, or way out of date.

The only way you'll ever get the answers you need is to be forceful and ASK THEM QUESTIONS!!!

I'm not happy with my situation, but I deal with it by means of humor and robbing banks.

--Jerry

rose20's picture
rose20
Posts: 282
Joined: Jan 2011

Sunshine, everything you have described sounds so much like my brother when he went mis diagnosed for esophageal cancer. He also was told it was acid reflux, and then after more tests he was told it was GERD. He had all the symptoms your boyfriend seems to just now being started with. The throwing up and food getting stuck...
They upped his meds also but he only grew horribly worse. By the time he went to a GASTRO. he was diagnosed with stage 4, inoperable, esophageal cancer. He is now in the worse fight of his life and it is so ugly.
William knows what he is talking about here. Don't stop now, tell your boyfriend to find someone who knows what he is doing!!!!!
Too much time has been wasted!
Doesn't sound like he is improving, only getting worse. I pray you can convince your boyfriend to move fast on this.

SimplySunshine
Posts: 6
Joined: Apr 2012

These comments are a punch in the gut but something I am pretty sure I already knew. We are so young so I wanted that to keep me going but I know cancer doesn't discriminate. We live in the Pacific NW. Travel would be hard because we have 3 young kids but it could be done.

I'm shocked. I know the biopsy results will be in the next 7-10 business days but what should I do today.

SimplySunshine
Posts: 6
Joined: Apr 2012

He is headed back to the ER because of the pain level. His gastro told him to go to make sure his esophagus doesn't have a hole in it. The nurse also told him that his ulcer is one long ulcer and that his esophagus is pretty torn up. I've told him while he is up there to push for more testing. This is so stressful.

While he is there are there any recommendations for what he should request? I can't be there because of the kids but I can be on the phone relaying the message.

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

If you are close, the University of Washington Fred Hutchinson Cancer Center along with the Seattle Cancer Care Alliance are great places to go. There are also decent places in Oregon. Capt. Dave lives down there. I live in Moses Lake, Central WA. Wenatchee has a cancer care center but it isn't in my estimation as good as the UW.

7 to 10 days for a biopsy result? I got mine the next day...

--Jerry

SimplySunshine
Posts: 6
Joined: Apr 2012

Yes. His discharge papers say 7-10 days by phone or mail. Last time the results came by mail. The places you listed are about 5 hours away from us. Something I could make happen. Do you have to call first? Just show up?? Been wanting to see Seattle for sometime now but I wish this wasn't my excuse for going. We are over in Eastern WA.

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Given the circumstances you describe, I would say that your current gastroenterologist is not taking your husbands situation very seriously. For them to ask you to wait 7 - 10 days for results by phone or mail sounds a bit insensitive. What if the results indicated a malignancy? If that were the case; the doctor should be there to explain the results. Sometimes the medical language can be difficult to understand and even good news can sound menacing. If it is bad news, your doctor should be there to explain potential next steps and to coordinate follow on medical appointments if they are required.

I also agree with Sherri, his doctor should be doing something in the short term to provide adequate nutritional support while the ulcerated area of his esophagus heals. There should be an esophageal ultra sound done to assess the structure of the esophageal walls to insure there is physical integrity to support the healing process.

From what you have described I see way too much "wait and see" activity going on here.

It sounds like there are some excellent resources in your immediate geographical area it sounds like it is time to make some calls.

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
Two year survivor

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

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