Surgery First?

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Comments

  • BobHaze
    BobHaze Member Posts: 163 Member
    #22
    JReed said:

    @BobHaze
    Thank you Bob! Between you and birdiequeen - that answered our question as to 'yes' it can be done. How are you doing? I see that your MIE was Sept 23. Also, I asked birdiequeen where is Mass General and that question should have been asked of you. The gastroentrologist who did the endoscopy and biopsy on Don could not get the scope past the tumor - would you think that maybe this indicates the tumor is only on the inside wall of the esophagus? Where was yours located? (same question to you birdiequeen if you read this).

    Thank you Jesus for letting us find each of you - we so appreciate your experiences and comments - you all are so helpful and that means so much to us.

    Thank you again!

    Don & Judy

    Mass General
    Massachusetts General Hospital is a major medical center in Boston, and I live 60 miles south of town. My journey was that I had no symptoms and was diagnosed during "routine surveillance" endoscopy due to Barrets Esophagus that was diagnosed 6 years ago. My local GI biopsied a suspicious spot at the bottom of my esophagus that he said looked "ulcerated," and the path report came back as distal esophageal adenocarcinoma. He said the next step should be an Endoscopic Ultrasound (EUS). I was fortunate to have an "in" with the head of Mass General's Endoscopy clinic and I had an EUS and a Confocal Endomicroscopy the following Tuesday. A week later the doctor called and said his procedures and the path report had confirmed EC, that the lesion was very small ("barely more than microscopic") and had grown only into the 1st layer of my esophagus. He recommended an MIE, explained what it is, and referred me upstairs to a thoracic surgeon (Dr. Christopher Morse) who did a fellowship with Dr. Luketich at UPMC, and who has done hundreds of MIE's.

    I had a CT scan later that week and an appointment with Dr. Morse the following week, where he expressed surprise that my local GI had even seen my "very early Stage 1" lesion, and said that the results of the EUS, Confocal Endomicroscopy and CT scan all indicated this was such early stage that there was no reason to suspect any nodal involvement and he recommended we go directly to surgery. My MIE was a couple of weeks later, and the path reports indicated the surgical margins and all 28 nodes he took during the surgery were clean, so he recommended no follow-up chemo.

    I completely agree with everyone who recommends writing down every question that comes to mind BEFORE you meet with the oncologist and/or the surgeon. We did, and still there were so many things running around my and my wife's minds during our first meeting that we almost forgot some of our questions! There is so much information being passed around, and there will be so many thoughts and questions running around your head that you can't possibly keep it all straight. And, of course TAKE LOTS OF NOTES. The doctors will be using terms you've likely never heard before, they'll be describing processes you've likely never heard of before, and they may be presenting you with options including the pros and cons of each, and if you don't write them down you won't be able to accurately remember it all. I know that for me, the whole time the surgeon was talking I was trying to pay attention, but in the front of my mind was the constant thought that I can't believe I have cancer and am here talking about having parts of my guts taken out. Thank God my very level-headed wife was with me! It's scary and confusing, but if you have an experienced medical team they will put your mind(s) at ease and take good care of you.

    Enough rambling for one night. Best of luck to you.

    Bob
    T1N0M0
    dx 8/3/11
    MIE 9/23/11
  • Freida
    Freida Member Posts: 182
    #23
    BobHaze said:

    Mass General
    Massachusetts General Hospital is a major medical center in Boston, and I live 60 miles south of town. My journey was that I had no symptoms and was diagnosed during "routine surveillance" endoscopy due to Barrets Esophagus that was diagnosed 6 years ago. My local GI biopsied a suspicious spot at the bottom of my esophagus that he said looked "ulcerated," and the path report came back as distal esophageal adenocarcinoma. He said the next step should be an Endoscopic Ultrasound (EUS). I was fortunate to have an "in" with the head of Mass General's Endoscopy clinic and I had an EUS and a Confocal Endomicroscopy the following Tuesday. A week later the doctor called and said his procedures and the path report had confirmed EC, that the lesion was very small ("barely more than microscopic") and had grown only into the 1st layer of my esophagus. He recommended an MIE, explained what it is, and referred me upstairs to a thoracic surgeon (Dr. Christopher Morse) who did a fellowship with Dr. Luketich at UPMC, and who has done hundreds of MIE's.

    I had a CT scan later that week and an appointment with Dr. Morse the following week, where he expressed surprise that my local GI had even seen my "very early Stage 1" lesion, and said that the results of the EUS, Confocal Endomicroscopy and CT scan all indicated this was such early stage that there was no reason to suspect any nodal involvement and he recommended we go directly to surgery. My MIE was a couple of weeks later, and the path reports indicated the surgical margins and all 28 nodes he took during the surgery were clean, so he recommended no follow-up chemo.

    I completely agree with everyone who recommends writing down every question that comes to mind BEFORE you meet with the oncologist and/or the surgeon. We did, and still there were so many things running around my and my wife's minds during our first meeting that we almost forgot some of our questions! There is so much information being passed around, and there will be so many thoughts and questions running around your head that you can't possibly keep it all straight. And, of course TAKE LOTS OF NOTES. The doctors will be using terms you've likely never heard before, they'll be describing processes you've likely never heard of before, and they may be presenting you with options including the pros and cons of each, and if you don't write them down you won't be able to accurately remember it all. I know that for me, the whole time the surgeon was talking I was trying to pay attention, but in the front of my mind was the constant thought that I can't believe I have cancer and am here talking about having parts of my guts taken out. Thank God my very level-headed wife was with me! It's scary and confusing, but if you have an experienced medical team they will put your mind(s) at ease and take good care of you.

    Enough rambling for one night. Best of luck to you.

    Bob
    T1N0M0
    dx 8/3/11
    MIE 9/23/11

    Bob,
    that is almost exactly
    Bob,
    that is almost exactly my husbands story. Diagnosed with Barrets in 2006. Took nexium. Cancer found on a check up for the Barret's. Unfortunately he had been putting off going back for the check up so his is larger. We still have no idea the size. All we keep being told is that the scans show a "thickening of the esophagus". I am not sure what that means as far as staging. Unfortunately the PET showed a hot lymph node (though no other spread), so I am thinking it is a 11 or 111 (hoping 2).
  • Unknown
    Unknown
    #24
    chemosmoker said:

    SO many choices and options!!
    Judy and Don,

    I would have to guess it has to do with how early stage the tumor is...but it's HARD not to agree that free-floating cancer cells let lose during surgery could go to other areas of the body. But since I am not a thoracic surgeon or a doctor I don't know. Maybe clean-up chemo is safe enough, but you didn't specify if they were going to do THAT? I can see having the strength at 100% due to NO chemo or radiation being a benefit as well as your recovery would seem so much more safe and sure. There are so many factors with all the things we learn reading and watching others go through these very issues here that it rises so many options/questions.

    I would certainly want to write all of this down and then sit with the thoracic surgeon and radiation oncologist and oncology team and ask what and why and why.

    Let us know what YOU decide and what happens and if you get any more information I would love to know what the reasoning is. There are already some great responses here. I will be following this post for sure.

    Would like to hear what William has to say on this on with all his years of observation.

    God bless and good luck!
    Eric

    This comment has been removed by the Moderator
  • birdiequeen
    birdiequeen Member Posts: 319
    #25
    unknown said:

    This comment has been removed by the Moderator

    Staging
    Yes, proper staging is a must. Plus as other have said, I don't think surgery first would be a person’s best decision if they were anything other than stage 0 or 1. Assuming their health is good enough to survive the surgery. Maybe I miss understood but I thought Judy and Don just have not yet been told the stage. I had not understood that proper staging had not been done. Judy, Has Don been through all the staging steps that Bob outlined in his reply?
  • BobHaze
    BobHaze Member Posts: 163 Member
    #26
    Freida said:

    Bob,
    that is almost exactly
    Bob,
    that is almost exactly my husbands story. Diagnosed with Barrets in 2006. Took nexium. Cancer found on a check up for the Barret's. Unfortunately he had been putting off going back for the check up so his is larger. We still have no idea the size. All we keep being told is that the scans show a "thickening of the esophagus". I am not sure what that means as far as staging. Unfortunately the PET showed a hot lymph node (though no other spread), so I am thinking it is a 11 or 111 (hoping 2).

    EUS for Staging
    I'm no doctor, but we all learn more than we'd ever dreamed we would, once we becomd involved with this beast, and it's my understanding from my own case and many others I've read on this wonderful board, that the next step after "finding" the cancer is an EUS for staging. Between the EUS and, at least in my case, the Confocal Endomicrosopy, they can both measure the dimensions of the tumor and see into the tissue to measure how deep, if at all, it has grown. If they haven't mentioned it yet I'd certainly be asking my doctor if an EUS is indicated and, if not, specificially what's next and when. And if you don't like the answer, GET A SECOND OPINION!

    BTW, recovery from the MIE isn't a walk in the park, but I'm almost 10 weeks post-op and I'm feeling physically really good. I still have some nerve issues in my rib cage that get better every week, I have some emotional issues related to this whole mess that I'm working on, and of course I'm still getting to know my new digestive system. But if you were to ask me if the MIE was worth it I'd say, "You bet your bippy!!!"

    Bob
    T1N0M0
    dx 8/3/11
    MIE 9/23/11
  • topaz1947
    topaz1947 Member Posts: 24
    #27
    I also was stage 1. My team
    I also was stage 1. My team of doctors at Duke saw nothing to warrent chemo or radiation. There was only one small tumor. After surgery the news came back that I had one node involved that did not show up on any of the tests. Of course the node was removed and then it was strongly suggested that I have chemo and rads, which I did. I could not have asked for a better team of docs. They all did what they thought was best.
  • GerryS
    GerryS Member Posts: 227 Member
    #28
    Surgery first...
    I, too had surgery first. DX in Feb 2010, Stage II. IL surgery one month later in March 2010 followed by 2 rounds of chemo as one node was found with disease. Will be a two year survivor in Feb. 2012. Best to you and all fighting this disease.

    Gerry

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