Failed non-invasive treatment now face esophgectomy

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jhaynes
jhaynes Member Posts: 14
edited March 2014 in Esophageal Cancer #1
I am a 63 year old male diagnosed by a biopsy during routine endoscopic monitoring for Reflux Disease with esophageal cancer. This was May of 2009. By August, 2009 I had extensive evaluations at MD Anderson in Houston (Endoscopic ultrasound and biopsies, blood evaluations, CT, PET) and was "staged" as I-a (very superficial adenocarcinoma in the 1st layer of the mucosa of the esophagus). Since then I have undergone endoscopic monitoring by Dr. Stephen DeMeester at the USC Norris Cancer Center in Los Angeles (equal distance from my home in El Paso, Texas vs. MD Anderson). I have have mucosal resections, Agron ablations, and was thanking God for such an early diagnosis that made this relatively "easy" treatment possible. In October, 2010 another area of malignant cells were found by the junction of my esophagus and stomach. This lesion could not be removed by endoscopic techniques, so Dr. DeMeester has recommended Esophgectomy. I am hoping to learn from others how to cope with this procedure and the changes that it will bring. I will be scheduled, most likely, in early December. My staging is not unclear and will depend on biopsy results; Most likely, now I-b. I am in relatively good health, a former Marine combat veteran from Vietnam and served over 20 years as a reserve Medical Officer in the U.S. Army. I am a physician by trade and teach Emergency Medicine and Toxicology at the local Medical School in El Paso. I am new to this site though I have monitored many similar sites, not contributing much because my course up till now was so benign compared to others.
I am a Christian man and know that all this is in God's hands and plans. I know the importance of learning from others how to cope and prepare for the difficult paths we walk in this life. Your help and support will be greatly appreciated. John Haynes

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  • Unknown
    Unknown
    #2
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    This comment has been removed by the Moderator
  • sandy1943
    sandy1943 Member Posts: 824
    #3
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    Hello John,Welcome, I was
    Hello John,Welcome, I was diagnosed with stage 111 ec with 2 lynph nodes in stomach in Nov.2007. I had pre opt chemo and then the ivor lewis surgery in may 2008.Post op chemo was started but stopped ,because of a blood clot. All scans show I am still disease free.
    It is a difficult road to travel. I did very well from what I've read from others. Everyone is different. There will be a lot of changes after surgery. You will have a new stomach and eating will be a lot differnt. You'll have to eat smaller amounts several times a day. This will be a permanant situation.
    I'm sure you'll have chemo and possible radiation. I didn't have radiation, but I can talk a little about chemo. Everyone reacts to it differntly. It would make me sick and cause my counts to drop . I would have to stop treatment,and take shots to build them back up. This was with every round I took, so it prolonged my surgery.
    I too am a christian and God has been with me all the way. I used to think of the chemo as god's juices.because without his blessing the drs. wouldn't be making the headway that's being made in this battle against cancer.
    One of the verses I get strength from daily is Isaih 41,13 " For I the Lord thy God will hold thy right hand, saying unto thee. Fear not I will help thee,"
    Please keep us posted. You'll be in my thoughts and prayers,

    Sandra
  • Unknown
    Unknown
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  • jhaynes
    jhaynes Member Posts: 14
    #5
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    unknown said:

    This comment has been removed by the Moderator

    Pending surgery
    Sherri:
    Thank you for your kind welcome. I am sorry to hear of your husband's staging, but I also believe that we are all individuals and our progress is determined by that fact. You will both be in my prayers. Mr. Marshall did send me messages that were most helpful and encouraging. I am having some swallowing difficulties, but they developed after my endoscopic treatments and seem to be strictures (scars) from the procedures. I am awaiting reports from the recent biopsies of November 3rd. The Surgeon I have is well known in the medical literature of surgery for esophageal cancer (developed the vagal sparing approach). He is at the University of Southern California Norris Cancer Center in Los Angeles. Have you run across his name (Dr. Stephen Demeester) in your research of this disease? I am looking for any current or former patients of his to communicate with. The head surgeon at MD Anderson trained under Dr. Demeester. I am planning to have the surgery under him, but am torn about a second opinion.As a physician myself, I have encouraged others to seek second opinions if for no other reason than peace of mind. There is no talk of Chemo or radiation at this point. It may depend on if there are any positive lymph nodes found at surgery. Thank you for your support and I am glad to be a member of the group, despite the circumstances that bring us all here.
  • Bedee
    Bedee Member Posts: 24
    #6
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    you asked about experiences with treatment and surgery
    I'm 55 and was diagnosed last July with esophageal cancer, (Stage 1, T1 N0 M0). I had chemo and radiation here in Montana. I was given 5FU and cisplatin, and endured mouth sores, anemia, constipation/diarrhea, vomiting, dehydration, low potassium levels. The radiation didn't bother me until the last week, when utter exhaustion hit. That took about a month to overcome. I was off work for 7 weeks for the chemo/rad treatments.

    My advice is to be sure to keep hydrated. And plan to have very limited energy after 2 or 3 weeks of radiation. Stock up on good juices and broths, easy to prepare, small servings of food, fiber supplement like Senecot S, movies to watch, and friends/family to help out.

    I had the Ivor Lewis surgery April 2010 at Mayo. I was hospitalized for 6 days following surgery, and was on pain meds for about 3 weeks. I found that sleeping upright, rather than lying down, helped me to overcome a cough I'd developed, and I felt better. Probably because I wasn't laying on the anything that had been cut.

    Eating after the surgery took a little time for me. I had the jtube for about 7 weeks. 3 weeks after surgery I tried eating, following the recommended diet of soft food. At first I couldn't keep anything down. About 6 weeks after surgery I started being able to eat, and have gradually increased food intake until now I eat normally, just small portions. I can't eat and drink at the same time. And, as you've probably read, Snickers candy bars are out, but I can eat small amounts of ice cream. I sleep with my head elevated to avoid acid reflux, and try not to eat late at night.

    Yesterday my onc declared me to have no evidence of disease and doesn't want to see me for 3 months!!

    All in all, its not fun, but we do survive and even grow from the experience.

    Best of luck John.
    debbie
  • Unknown
    Unknown
    #7
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    jhaynes said:

    Pending surgery
    Sherri:
    Thank you for your kind welcome. I am sorry to hear of your husband's staging, but I also believe that we are all individuals and our progress is determined by that fact. You will both be in my prayers. Mr. Marshall did send me messages that were most helpful and encouraging. I am having some swallowing difficulties, but they developed after my endoscopic treatments and seem to be strictures (scars) from the procedures. I am awaiting reports from the recent biopsies of November 3rd. The Surgeon I have is well known in the medical literature of surgery for esophageal cancer (developed the vagal sparing approach). He is at the University of Southern California Norris Cancer Center in Los Angeles. Have you run across his name (Dr. Stephen Demeester) in your research of this disease? I am looking for any current or former patients of his to communicate with. The head surgeon at MD Anderson trained under Dr. Demeester. I am planning to have the surgery under him, but am torn about a second opinion.As a physician myself, I have encouraged others to seek second opinions if for no other reason than peace of mind. There is no talk of Chemo or radiation at this point. It may depend on if there are any positive lymph nodes found at surgery. Thank you for your support and I am glad to be a member of the group, despite the circumstances that bring us all here.

    This comment has been removed by the Moderator
  • GerryS
    GerryS Member Posts: 227 Member
    #8
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    Bedee said:

    you asked about experiences with treatment and surgery
    I'm 55 and was diagnosed last July with esophageal cancer, (Stage 1, T1 N0 M0). I had chemo and radiation here in Montana. I was given 5FU and cisplatin, and endured mouth sores, anemia, constipation/diarrhea, vomiting, dehydration, low potassium levels. The radiation didn't bother me until the last week, when utter exhaustion hit. That took about a month to overcome. I was off work for 7 weeks for the chemo/rad treatments.

    My advice is to be sure to keep hydrated. And plan to have very limited energy after 2 or 3 weeks of radiation. Stock up on good juices and broths, easy to prepare, small servings of food, fiber supplement like Senecot S, movies to watch, and friends/family to help out.

    I had the Ivor Lewis surgery April 2010 at Mayo. I was hospitalized for 6 days following surgery, and was on pain meds for about 3 weeks. I found that sleeping upright, rather than lying down, helped me to overcome a cough I'd developed, and I felt better. Probably because I wasn't laying on the anything that had been cut.

    Eating after the surgery took a little time for me. I had the jtube for about 7 weeks. 3 weeks after surgery I tried eating, following the recommended diet of soft food. At first I couldn't keep anything down. About 6 weeks after surgery I started being able to eat, and have gradually increased food intake until now I eat normally, just small portions. I can't eat and drink at the same time. And, as you've probably read, Snickers candy bars are out, but I can eat small amounts of ice cream. I sleep with my head elevated to avoid acid reflux, and try not to eat late at night.

    Yesterday my onc declared me to have no evidence of disease and doesn't want to see me for 3 months!!

    All in all, its not fun, but we do survive and even grow from the experience.

    Best of luck John.
    debbie

    Me too.........
    I also had my surgery at Mayo, MN March 2010. I had Dr Deschamps for surgery and Dr Alberts is my onocologist. I was diagnosed in Feb. 10 Stage 2,N1 M0. Surgery was followed by 2 months chem, cisplatin and 5FU.

    The surgery is tough but I am doing very well now. Watch what I eat and don't get too full! I was at Mayo last Friday and Dr Alberts believes things are going well. I will return in Feb for the ct scan.

    Best of luck to you I am 58.

    Gerry
  • jhaynes
    jhaynes Member Posts: 14
    #9
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    Bedee said:

    you asked about experiences with treatment and surgery
    I'm 55 and was diagnosed last July with esophageal cancer, (Stage 1, T1 N0 M0). I had chemo and radiation here in Montana. I was given 5FU and cisplatin, and endured mouth sores, anemia, constipation/diarrhea, vomiting, dehydration, low potassium levels. The radiation didn't bother me until the last week, when utter exhaustion hit. That took about a month to overcome. I was off work for 7 weeks for the chemo/rad treatments.

    My advice is to be sure to keep hydrated. And plan to have very limited energy after 2 or 3 weeks of radiation. Stock up on good juices and broths, easy to prepare, small servings of food, fiber supplement like Senecot S, movies to watch, and friends/family to help out.

    I had the Ivor Lewis surgery April 2010 at Mayo. I was hospitalized for 6 days following surgery, and was on pain meds for about 3 weeks. I found that sleeping upright, rather than lying down, helped me to overcome a cough I'd developed, and I felt better. Probably because I wasn't laying on the anything that had been cut.

    Eating after the surgery took a little time for me. I had the jtube for about 7 weeks. 3 weeks after surgery I tried eating, following the recommended diet of soft food. At first I couldn't keep anything down. About 6 weeks after surgery I started being able to eat, and have gradually increased food intake until now I eat normally, just small portions. I can't eat and drink at the same time. And, as you've probably read, Snickers candy bars are out, but I can eat small amounts of ice cream. I sleep with my head elevated to avoid acid reflux, and try not to eat late at night.

    Yesterday my onc declared me to have no evidence of disease and doesn't want to see me for 3 months!!

    All in all, its not fun, but we do survive and even grow from the experience.

    Best of luck John.
    debbie

    Thanks
    Hi Debbie:

    Thank you for sharing your experience with this disease with me. I am over a year out from diagnosis. I have had no Chemo or radiation, was getting a relativelty new treatment program that envolved endoscopic treatments and monitoring. On November 3, a lession was found that could not be removed by a scope. I will have my surgery on December 14. The surgeon does over 200 per year and uses the new minimally invasive technique with various scopes. Obviously, the lymph nodes will be removed also.
    I appreciate your experience in that after 30 years of seeing patients in the emergency room, most people are most frightened by what they don't know. All information usually helps calm the anxiety and fear that we all experience (I am an old combat veteral from Vietnam and learned at 19 that anyone who tells you they are not frightened is lying or crazy). I will pray that all your follow up visits will be "NED".

    Thanks again,
    John
  • Bobs1wife
    Bobs1wife Member Posts: 150
    #10
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    GerryS said:

    Me too.........
    I also had my surgery at Mayo, MN March 2010. I had Dr Deschamps for surgery and Dr Alberts is my onocologist. I was diagnosed in Feb. 10 Stage 2,N1 M0. Surgery was followed by 2 months chem, cisplatin and 5FU.

    The surgery is tough but I am doing very well now. Watch what I eat and don't get too full! I was at Mayo last Friday and Dr Alberts believes things are going well. I will return in Feb for the ct scan.

    Best of luck to you I am 58.

    Gerry

    Doing Well
    Gerry, We were back to Mayo about three week ago, and have 1st CT scan, since surgery, on November 17th. Bob is doing well, and we just got our adjustable bed, so no more sleeping in the chair! I think sleeping has been at the top of our "new normal" issues. First night went well with the new bed, no wake up with reflux. He would start out ok, but as the night went on he would slip down and there came the reflux. Awake and coughing would last a couple of hours after that. I think being able to adjust the leg position also helps with staying in place and upright.

    Glad you are doing well. We are in the midwest, too, and winter has arrived! Linda

    Bob's dx 3-31-10, surgery 8-16-10, Dr. Dennis Wigle, MIE-Ivor Lewis-Robotic Assist, Mayo Clinic, Rochester, T3-(staging at surgery was y2), N1, M0.

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