Tumor or ulcer?

ms
ms Member Posts: 7
edited March 2014 in Esophageal Cancer #1
Two months ago I sought medical advice regarding chest and back pressure. A CT scan indicated an esophageal mass. Since then, one doctor feels it is an ulcer. Another feels it is cancer. After two CT scans, three endoscopies (two ultrasound and one with fine needle aspiration), the jury is still out. Although all biopsies have been normal, one doctor feels strongly that this is esophageal cancer. PET scan only approved by insurance if there is already a diagnosis of cancer, and doctor feels it would respond to the mass and not add to the knowledge. Great confidence in doctor who is on staff at major site mentioned in this discussion group. Has anyone had experience like this? Can anyone offer any further insight? In advance, thanks.

Comments

  • Boston67
    Boston67 Member Posts: 61
    #2
    Just some thoughts
    Esophageal Cancer is hard to detect and then it is often to late to cure. Your chances of a cure is very low unless detected early.

    I have stage IV EC. From where I sit, you should find out the answer as soon as you can. If one doctor things it may be, you should have enough for your insurance company to continue the exploration. Demand it, and then do it anyway. You do not wish to be where I am.

    Look for a respond from William and Loretta who might have some good advice for you.

    Worry that it is EC and hope for the best.

    I would get myself to the best EC cancer specialist cancer center that makes sense for you. I got myself to Dana Farber and just demanded and insisted on getting what I wanted.

    If you have trouble with your insurance company this may help you. Every state has some sort of law putting insurance companies at great financial risk for "unfair business practices. Google that and see if you can find a summary of the law in your state. If the company denies you reasonable exploratory testing to see if you have a life threatening disease, send them a letter (important) claimng whatever the law says they can not do. Send it to the insurance company's President and a seperate letter to it's General Counsel.

    A lot of here at this site are dying and all expect shorter lives because of EC. Nothing can be more important to you then sorting this out. Time is not on your side.

    Keith
    age 67 Boston
    Stage IV EC
  • sal314
    sal314 Member Posts: 599 Member
    #3
    MS, I Agree with Everything Keith Said...
    you don't wanna mess around with EC, if indeed it is truly EC. Time is of the upmost importance. Go to a top notch specialist to find out what's REALLY going on ASAP. If it is EC you want to start treatment and start it FAST. EC is a super fast growing, hard to get ride of cancer. Not to freak you out, but it's extremely serious stuff.

    Keep us posted on your situation. The people on this board truly care, are extremely knowledgeable and will support you through your journey! :)

    Blessings,
    Sally
  • ms
    ms Member Posts: 7
    #4
    Boston67 said:

    Just some thoughts
    Esophageal Cancer is hard to detect and then it is often to late to cure. Your chances of a cure is very low unless detected early.

    I have stage IV EC. From where I sit, you should find out the answer as soon as you can. If one doctor things it may be, you should have enough for your insurance company to continue the exploration. Demand it, and then do it anyway. You do not wish to be where I am.

    Look for a respond from William and Loretta who might have some good advice for you.

    Worry that it is EC and hope for the best.

    I would get myself to the best EC cancer specialist cancer center that makes sense for you. I got myself to Dana Farber and just demanded and insisted on getting what I wanted.

    If you have trouble with your insurance company this may help you. Every state has some sort of law putting insurance companies at great financial risk for "unfair business practices. Google that and see if you can find a summary of the law in your state. If the company denies you reasonable exploratory testing to see if you have a life threatening disease, send them a letter (important) claimng whatever the law says they can not do. Send it to the insurance company's President and a seperate letter to it's General Counsel.

    A lot of here at this site are dying and all expect shorter lives because of EC. Nothing can be more important to you then sorting this out. Time is not on your side.

    Keith
    age 67 Boston
    Stage IV EC

    For Keith
    Keith, We may meet. My doctor is on the staff at Dana. I also go in there with a friend who is being treated for multiple myeloma. My state is your state. However, the doc doesn't seem to think that the PET scan is the answer. Another EUS coming up next month at the Brigham. I'll be at Dana the afternoon of Feb. 16.
    Good luck with your journey.
  • oriontj
    oriontj Member Posts: 375
    #5
    That's exactly Tom's symptoms
    What you described is what my husband felt..the endoscope saw a mass....and off we went to the U of C...it was cancer...

    The recurrance of his cancer is at the site of a small ulcer...it's extremely small..but this cancer though it is slow growing when you don't know you have...is relentless...

    Go somewhere else quickly...do everything you can.

    Just to put your mind at ease about the PET scan, Tom only had one and his doctors do not like them. They can give false positives and won't always pick up the small cells...so they prefer a CT..

    jan
  • Boston67
    Boston67 Member Posts: 61
    #6
    ms said:

    For Keith
    Keith, We may meet. My doctor is on the staff at Dana. I also go in there with a friend who is being treated for multiple myeloma. My state is your state. However, the doc doesn't seem to think that the PET scan is the answer. Another EUS coming up next month at the Brigham. I'll be at Dana the afternoon of Feb. 16.
    Good luck with your journey.

    I was first told a PET scen was not needed
    Hi,

    I was first told by the Onocoligist that a PET scan was not needed. My next visit was to the Thorasic surgeon and he ordered one which I had the next day.

    I am not aware of your situation and your staging could be much lower them mine. But in my case, the PET scan WAS needed and found cancer in my bones. Not good news, but vital to know to plan treatment. That was one of the facts that caused me to change from tufts to Dana Farber.

    The PET scan is not difficult nor too envasive and I would imagine that most with EC should have a PET scen.

    Keith
    age67 Boston
    Stage IV
  • JimsBrother
    JimsBrother Member Posts: 94
    #7
    I would
    First let me say I am not nearly as informed as many here. However, reading your post I could not help thinking that the difference between a correct diagnosis and a shot in the dark may be the PET scan. If the insurance company is still refusing the test, I would contact an attorney. Sometimes a letter to the right individual in a position to appeal a decision can be the difference. Even if it doesn't, you are giving them notice that a wrong decision could impact someones life and they need to reconsider now rather than in court later. If a doctor says the test is needed to make the correct diagnosis, get it in writing and take it to an attorney.

    It may be a long shot, but I would not hesitate getting an attorney involved. The court can also order the test if it comes down to that. If the first attorney says no, find one that says yes. Naturally time is the most important factor.

    I wish you luck, and my prayers are with you.

    Rob

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