Husband scheduled for Ivor Lewis

RKMikulski
RKMikulski Member Posts: 34
in Esophageal Cancer #1

My husband was diagnosed stage 2a, tumor at junction.  Scheduled for Ivor lewis April 23rd.  I am looking for advice and words of wisdom from caregivers.  I am looking for strength to get through this, we only have each other.

Comments

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #2
    welcome

    Feel free anytime to post questions, fears, updates, etc. You will find great comfort here. Has your husband had any treatment yet, where is going for surgery? Are his Drs experienced with this disease? There are so many questions and I'm sure you will have many as well. Be strong, this is quite the journey. Tell us a little more about your story! I'm sorry you had to find us.

  • RKMikulski
    RKMikulski Member Posts: 34
    #3
    He has had a million

    He has had a million different tests and scans.  The Pet showed two small spots on lungs, we were told not to worry (easy for them to say).  His only sympton was stomach and chest pain similiar to a gall bladder attack.  I would never have dreamed he would have been diagnosed with this horrible disease.  He is being treated at Northwest Community Hospital in Arlington Heights, Il, just outside of Chicago.  His suregon is Dr. Billamoria.  I asked him how many he has done he said 70 a year and not a single leak. I am very worried about his recover, I don't understand how someone can recover while not being able to eat and losing a ton of weight.  My husband just turned 52 he has had GERD for 20 years and was always slighlty (15lbs) over weight.  Since Christmas he has lost 30 lbs and seems to be losing at least 5lbs a week. I should add he hates Doctors, Hospitals, Needles, Blood, etc...  He is going to wake up after surgery and be completely freaked out. 

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #4
    RKMikulski said:

    He has had a million

    He has had a million different tests and scans.  The Pet showed two small spots on lungs, we were told not to worry (easy for them to say).  His only sympton was stomach and chest pain similiar to a gall bladder attack.  I would never have dreamed he would have been diagnosed with this horrible disease.  He is being treated at Northwest Community Hospital in Arlington Heights, Il, just outside of Chicago.  His suregon is Dr. Billamoria.  I asked him how many he has done he said 70 a year and not a single leak. I am very worried about his recover, I don't understand how someone can recover while not being able to eat and losing a ton of weight.  My husband just turned 52 he has had GERD for 20 years and was always slighlty (15lbs) over weight.  Since Christmas he has lost 30 lbs and seems to be losing at least 5lbs a week. I should add he hates Doctors, Hospitals, Needles, Blood, etc...  He is going to wake up after surgery and be completely freaked out. 

    I may be out of bounds

    Have you had a second opinion? 70 a year is not many. U of Michigan does over 300 a year. My husbands surgeon has done over 3000 on his own. I have read alot about the University of Chicago hospital, they specialize in this. Please consider a second opinion. My husbands surgeon also had my husband get in top shape for surgery, was given a spirometer to use daily and had to walk 1 to 2 miles a day. He is 64 but in good shape generally, still played hockey up until this. Just please consider...

  • RKMikulski
    RKMikulski Member Posts: 34
    #5
    LauraandLarry said:

    I may be out of bounds

    Have you had a second opinion? 70 a year is not many. U of Michigan does over 300 a year. My husbands surgeon has done over 3000 on his own. I have read alot about the University of Chicago hospital, they specialize in this. Please consider a second opinion. My husbands surgeon also had my husband get in top shape for surgery, was given a spirometer to use daily and had to walk 1 to 2 miles a day. He is 64 but in good shape generally, still played hockey up until this. Just please consider...

    His Doctors are working on

    His Doctors are working on getting him healther, he is on a high protien low fat 6 meals a day diet.  He was not out of shape to begin with but has lost a lot of weight.  His current Doctor is his second opinion.  We were given the options of either doing it here, in Texas, Maryland or at UCLA.  His first Doctor said you have Barrett's and should have some treatments done, said nothing about the tumor he saw.  We went for a second opinion where we found out that the original Biopsy was misdiagnosed and it was cancer.  He was orignally diagnosed with High Dysplasia Barrett's Disease. We were basically like a deer in the headlights.  Thought he was going to have another scope and come back for yearly scopes,  never dreamed it was going to end up like this.  But I am sure everyone else felt the same way.

  • paul61
    paul61 Member Posts: 1,391 Member
    #6
    RKMikulski said:

    His Doctors are working on

    His Doctors are working on getting him healther, he is on a high protien low fat 6 meals a day diet.  He was not out of shape to begin with but has lost a lot of weight.  His current Doctor is his second opinion.  We were given the options of either doing it here, in Texas, Maryland or at UCLA.  His first Doctor said you have Barrett's and should have some treatments done, said nothing about the tumor he saw.  We went for a second opinion where we found out that the original Biopsy was misdiagnosed and it was cancer.  He was orignally diagnosed with High Dysplasia Barrett's Disease. We were basically like a deer in the headlights.  Thought he was going to have another scope and come back for yearly scopes,  never dreamed it was going to end up like this.  But I am sure everyone else felt the same way.

    I would second Laura's suggestion

    I would really encourage you to get a second surgical opinion. It is not typical for someone who is staged as 2A to go directly to surgery without some form of pre-surgery chemotherapy or radiation therapy. I can tell you from personal experience that I went directly to surgery because they thought I was Stage 1 or 2 and after I had my Ivor Lewis surgery they found active cancer cells in one of the lymph nodes removed as part of the post-surgical pathology analysis.

    As a result, I had to undergo 18 weeks of chemotherapy while I was recovering from surgery. Chemotherapy is difficult at best, but much more difficult while trying to recover from surgery with a compromised digestive system.

    Your husband is very fortunate to be diagnosed at such an early stage. I would suggest getting a second surgical opinion from somewhere like University of Michigan in Ann Arbor, University of Pittsburgh Medical Center in Pittsburgh, or MD Anderson Cancer Center in Houston, TX.

     Here are some references for their web pages:

     http://www.cancer.med.umich.edu/cancertreat/thoracic/cancer_of_the_esophagus.shtml

     http://www.upmccancercenter.com/portal_lung/program.cfm

     http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/esophageal-cancer/treatment/index.html

     

    I know it all seems to be a blur at this point, and so many decisions to make; but I encourage you to take your time about picking a surgeon and treatment center that is best for you. Many people are concerned about traveling away from home for treatment; but all of these centers can set up a treatment program that can be administered and home and managed from there prior to surgery.

     If your husband would like to discuss my surgery and treatment with me please send me a private message and I will send along my telephone number and email.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

  • South Side Steve
    South Side Steve Member Posts: 32
    #7
    Welcome

     Welcome to this site, but sorry you have to be here. I know the feeling of having your whole world turned upside down when your doctor tells you that you have cancer. I was diagnosed with Stage II B esophageal cancer in November of 2011 and had the Ivor Lewis surgery in March of 2012. Prior to surgery, I underwent chemo and radiation treatments. My post-surgery pathology reports showed no evidence of disease, so I didn’t require any additional chemo treatments. I agree with Paul’s suggestion about obtaining a second opinion on the surgical aspect of your treatment plan. As he said, the most common treatment plan consists of the trimodal approach – chemo, radiation, and surgery. Post-surgery chemo is determined by the post-surgery pathology results. 

    This is a very invasive surgery, but given your young age, you should be able to make a full recovery. I found it very beneficial to talk to persons that had gone through the surgery before I had mine, so feel free to send me a message via CSN e-mail and I will give you my contact information.

    As for hating doctors and needles, you’ll have to learn to get over it. After surgery, you’ll have tubes coming out of places where there weren’t even any openings before. You just have to remind yourself that you’re lucky to be a candidate for surgery. I think keeping a positive attitude really helps in the recovery.

    Steve Wendt 

    DX 11/2011 T2N1M0 Stage IIB, Chemo and radiation 12/2011 – 1/2012, Ivor Lewis surgery 3/13/2012

  • LauraandLarry
    LauraandLarry Member Posts: 184
    #8
    Please

    Please, please consider what survivors are suggesting. My husband had his surgery at the University of Michigan by Dr Mark Orringer, you can google him or the links that Paul gave to you. My husband was originally staged at stage3. Surgical pathology said stage2, and there were still cancer cells found after pre surgery chemo and radiation. You must be overwhelmed and be thinking as I did " lets just get this thing out". I am so sorry that it just isnt that easy. Go for a third or fourth opinion if you have too.don't give up and dont settle for anything less the best.

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