I'm sorry ---------- but ------

bewildered
bewildered Member Posts: 4
in Esophageal Cancer #1
I'm sorry to intrude upon your board but after extensive Internet research, I just don't know where else to turn to for help. If you could point me to the correct board or else help me to understand the following biopsy results, I would be most appreciative. First, To begin with, my husband had an endoscopy done because after years of constantly clearing his throat and mentioning it to a couple of docs, the tickle in his throat became worse. He had no heartburn, reflux or any other symptoms. After the procedure, the gastro doc came into the room and said that he had found a lower esophageal ulcer and had biopsied it, along with a stomach biopsy. He also said that he was to take two Nexiums a day, come back in 12 weeks for a repeat endoscopy and out the door he went. We waited a week and went to medical records at our local community hospital inorder to get the biopsy results report.After reading it, red flags went up in my mind and two days of intensive research began by looking up the individual words. I think that I understand their definitions but do not know how they fit together but based on the little I now know, I do not think that he should wait 12 weeks for another endoscope. I've discovered a doc at Mass General in Boston who studied under and now performs the MIE that William talks about ,so therefore assume that he is one of the best in the field.If so, do docs look at biopsy specimens and give a second opinion on them? However, maybe I'm just paranoid and over reacting but my gut tells me to do something before the 12 weeks,. Please can someone help. If so, thanks in advance.

The biopsy report reads as follows:

A- stomach - mild chronic gastritis, inactive ---- Immunohistochemical staining for Helicobacter pylori is negative for organisms. [ this I understand]

B- Esophagus-- Squamocolumnar mucosa with ulceration, granulation tissue, reactive changes, and extensive intestinal metaplasia

Indefinite for dysplasia ----see comment

COMMENT ---- The B specimen is indefinite for dysplasia due to extensive inflamation. Re- biopsy after resolution of inflammation is recommended.

Good luck to all of you . Regards, Claudia

Comments

  • ms
    ms Member Posts: 7
    #2
    For Claudia
    First, you CAN ask for another pathologist at another facility to read the biopsies.
    My experience may help - The radiologist read my CT scan as EC. A biopsy a few days later was negative for cancer and the doctor prescribed omeprazol twice a day. A third doctor felt that the CT scan was correct. That lead to three more endoscopies with ultrasound and fine needle aspiration at a highly respectable facility. After three and a half months, all biopsies continue to be negative and there is no dysplasia. The growth in my esophagus is shrinking. Like you, I was in a state of panic and concern. I will have another endoscopy in six months and then follow up every three years.
    Perhaps you should contact the doctor and ask for an explanation of the biopsy report. Your primary care doctor may be able to do this for you. Your husband's experience is the only one similar to mine that I have found in following these sites for several months. Hope this offers some context for your decision making.
  • sandy1943
    sandy1943 Member Posts: 824
    #3
    HI, I am a EC survivor. This
    HI, I am a EC survivor. This is a good site to come to, because it sounds like it is your husbands esophagus. You do need other opinions. There is no way I would wait 12 weeks. There are others on here that are knowlegeble enough to give you help in making the right decisions. they will pick up on your post pretty fast. One thing about a problem with the esophagus is, there is no time. We need to know the exact problem quickly.
    It seems like you are on the ball . Education is so important. A lot of what you read on the internet is so scary,but what you read here will help you make the right decisions. You mentioned William. He will help you as soon as he can. He has been out of town, but still checks in.
    Sandra
  • Unknown
    Unknown
    #4
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  • linda1120
    linda1120 Member Posts: 389
    #5
    unknown said:

    This comment has been removed by the Moderator

    Listen
    Bewildered, please listen to what William has told you. He and Loretta have gained a lot of knowledge and have great resources to help you. They helped my husband and I and kept Jim from having an Ivor Lewis surgery and encouraged me to get him to a large cancer center that handles lots of esophageal surgeries. It literally saved Jim's life, of course with God's help!

    Linda
  • bewildered
    bewildered Member Posts: 4
    #6
    Thank you

    to ms, Sandra, William and Linda for your replies. I greatly appreciate your taking the time to help. Today was another wasted day as I called the gastro docs office, hoping to get an explanation on the biopsy results and to tell him that waiting 12 weeks for a repeat endoscopy was unacceptable and etc.etc. However, he was not in today but his medical assistant said that he had dictated a letter last week , after he received the results.I then told her that no letter was received here. Her only response was to call back tomorrow as he is the one to speak to. . Once again, thank you and know that I have added a new group of people to my prayer list ---- all of you on this board. Regards, Claudia
  • linda1120
    linda1120 Member Posts: 389
    #7
    bewildered said:

    Thank you

    to ms, Sandra, William and Linda for your replies. I greatly appreciate your taking the time to help. Today was another wasted day as I called the gastro docs office, hoping to get an explanation on the biopsy results and to tell him that waiting 12 weeks for a repeat endoscopy was unacceptable and etc.etc. However, he was not in today but his medical assistant said that he had dictated a letter last week , after he received the results.I then told her that no letter was received here. Her only response was to call back tomorrow as he is the one to speak to. . Once again, thank you and know that I have added a new group of people to my prayer list ---- all of you on this board. Regards, Claudia

    Doctor
    Claudia, I would go and park myself in that doctor's office until I had an answer! That is my response! You don't have the time to wait. I don't mean to scare you, but this is a very aggressive cancer.

    Linda
  • bewildered
    bewildered Member Posts: 4
    #8
    linda1120 said:

    Doctor
    Claudia, I would go and park myself in that doctor's office until I had an answer! That is my response! You don't have the time to wait. I don't mean to scare you, but this is a very aggressive cancer.

    Linda

    Linda & William
    Linda, your suggestion to " park myself" at the doc's office is a good one . If he does not return my call of this morning, I will have to do just that because much time has already been wasted. He was in surgery this morning. Thanks for your suggestion. William, I am eagerly awaiting a continuation of your Feb.27th post to me. Thanks.
  • Unknown
    Unknown
    #9
    bewildered said:

    Linda & William
    Linda, your suggestion to " park myself" at the doc's office is a good one . If he does not return my call of this morning, I will have to do just that because much time has already been wasted. He was in surgery this morning. Thanks for your suggestion. William, I am eagerly awaiting a continuation of your Feb.27th post to me. Thanks.

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator
  • bewildered
    bewildered Member Posts: 4
    #11
    unknown said:

    This comment has been removed by the Moderator

    William, you are an amazing man.

    The time and effort you put in is appreciated more than words can express. Thank you.I see from other posts that it is possible to e-mail directly but after searching this site, still don't find how that is done. I will begin by answering your questions. 1- Yes, Dr. Christopher Morse who trained under Dr. Luketich is the doc that I discovered at Mass General. I know nothing else about him and only know that the hospital is ranked #4 top hospital.He was of interest to us for those reasons plus we live fairly close by. 2- No mention was made by anyone about Barrett's. Except for what I have already mentioned, nothing else was said period. [ The letter arrived yesterday morning but said exactly what the doc reported after he did the endoscopy and a mini version of what was on the biopsy report. Interestingly, it was dated ,not postmarked Feb.22. This we found interesting.] 3- We have Medicare as primary and Blue Cross as secondary. From what has been gathered, it appears that a second opinion is only offered for surgical cases.I have not verified this. My husband does not, as he put it, want to put the cart before the horse. He feels that what should be done is to find a pathologist, who has read many esophageal biopsies and get his opinion. How to go about doing only that, I have not figured out.Do you or anyone else know? I feel[ gut feeling] that he feels another report would indicate just esophagitis and therefore another doc at this point may be unecessary.In fact, his words were, " until we get a second opinion on the biopsy, why should you search for another doc" Needless to say, I am slowly wading through everything you sent, trying to educate myself as much as possible. The whole situation is made harder by the fact that my husband does not seem overly concerned or interesting in learning about the ramificatios that are true possibilities.Once again, thank you and I am so happy that you received a clean bill of health. Claudia
  • Unknown
    Unknown
    #12
    bewildered said:

    William, you are an amazing man.

    The time and effort you put in is appreciated more than words can express. Thank you.I see from other posts that it is possible to e-mail directly but after searching this site, still don't find how that is done. I will begin by answering your questions. 1- Yes, Dr. Christopher Morse who trained under Dr. Luketich is the doc that I discovered at Mass General. I know nothing else about him and only know that the hospital is ranked #4 top hospital.He was of interest to us for those reasons plus we live fairly close by. 2- No mention was made by anyone about Barrett's. Except for what I have already mentioned, nothing else was said period. [ The letter arrived yesterday morning but said exactly what the doc reported after he did the endoscopy and a mini version of what was on the biopsy report. Interestingly, it was dated ,not postmarked Feb.22. This we found interesting.] 3- We have Medicare as primary and Blue Cross as secondary. From what has been gathered, it appears that a second opinion is only offered for surgical cases.I have not verified this. My husband does not, as he put it, want to put the cart before the horse. He feels that what should be done is to find a pathologist, who has read many esophageal biopsies and get his opinion. How to go about doing only that, I have not figured out.Do you or anyone else know? I feel[ gut feeling] that he feels another report would indicate just esophagitis and therefore another doc at this point may be unecessary.In fact, his words were, " until we get a second opinion on the biopsy, why should you search for another doc" Needless to say, I am slowly wading through everything you sent, trying to educate myself as much as possible. The whole situation is made harder by the fact that my husband does not seem overly concerned or interesting in learning about the ramificatios that are true possibilities.Once again, thank you and I am so happy that you received a clean bill of health. Claudia

    This comment has been removed by the Moderator

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