Need help with surgeon at Clev Clinic or OSU for minimally invasive surgery

newbutterfly
newbutterfly Member Posts: 7
edited March 2014 in Esophageal Cancer #1
My husband was diagnosed with EC 2 days ago. We are petrified. He just turned 60. Our CT scan and PET are next week to stage it, but he has abdominal pain on both sides and has lost 19 lbs in 10 days so we do not expect good news. We wanted Dr. Luketich in PA but our insurance says we have to go to Cleveland Clinic or OSU - Do they do the minimally invasive surgery? Who is good there?

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
    I would check with Dr. Luketich's Office
    Welcome to our group. So sorry you find yourself in a position that you have to be here.

    I would contact Dr. Luketich's office to see if there is someone at Cleveland Clinic that trained under him and can offer MIE.

    Your staging process should also include an endoscopic ultrasound (EUS) to insure complete staging. They may do that as a follow up to your husband's scans.

    Like your husband, I am in my early 60's. I was diagnosed with EC in December of last year, Stage 2B T2N1M0. I had surgery and chemotherapy and my last CT scan was clear. I know hearing the word "CANCER" is a frightening experience but treatment options have improved significantly over the last few years.

    Ignore the statistics, they refer to history and the treatment options for EC are not standing still. Do as much research as you can to educate yourself to available options and if you feel the answer you are receiving from your insurance company does not make sense appeal to the next level. Don't be afraid to ask to speak to a supervisor or ask to have a nurse benefits coordinator assigned.

    You will find this site to be a great resource for information and support. All of us here have been through what you and your husband are going through right now. Ask lots of questions. Take notes. If you don't understand a word, ask what it means.

    We will be praying that your husband gets good news next week.

    Best Regards,

    Paul Adams
    AKA "paul61"
    McCormick, South Carolina
  • newbutterfly
    newbutterfly Member Posts: 7
    #3
    paul61 said:

    I would check with Dr. Luketich's Office
    Welcome to our group. So sorry you find yourself in a position that you have to be here.

    I would contact Dr. Luketich's office to see if there is someone at Cleveland Clinic that trained under him and can offer MIE.

    Your staging process should also include an endoscopic ultrasound (EUS) to insure complete staging. They may do that as a follow up to your husband's scans.

    Like your husband, I am in my early 60's. I was diagnosed with EC in December of last year, Stage 2B T2N1M0. I had surgery and chemotherapy and my last CT scan was clear. I know hearing the word "CANCER" is a frightening experience but treatment options have improved significantly over the last few years.

    Ignore the statistics, they refer to history and the treatment options for EC are not standing still. Do as much research as you can to educate yourself to available options and if you feel the answer you are receiving from your insurance company does not make sense appeal to the next level. Don't be afraid to ask to speak to a supervisor or ask to have a nurse benefits coordinator assigned.

    You will find this site to be a great resource for information and support. All of us here have been through what you and your husband are going through right now. Ask lots of questions. Take notes. If you don't understand a word, ask what it means.

    We will be praying that your husband gets good news next week.

    Best Regards,

    Paul Adams
    AKA "paul61"
    McCormick, South Carolina

    Thanks paul61
    Now at last I do not feel so alone. Thank you for taking the time to answer us. You gave some great suggestions. Our prayers go out to you too. The most scary part is all the pain he is having in his side. Please stay with us through this.
  • tb7
    tb7 Member Posts: 52
    #4
    Cleveland Clinic . . .
    Hi!

    The nationally designated “Case Comprehensive Cancer Center” is both University Hospitals Case Medical Center and the Cleveland Clinic. They are separate entities, so you might want to check them both out. University Hospitals operates the Ireland Cancer Center, while Cleveland Clinic operates the Taussig Cancer Institute. We used Ireland Cancer Center. Don't know if you can use your insurance at UH, but I thought I would share some info . . .

    My husband’s thoracic surgeon was Dr. Philip Linden who came to University Hospitals Case Medical Center from Brigham & Women's Hospital in Boston and now is the Division Chief, Thoracic and Esophageal Surgery at UH. He is quiet and not extremely forthcoming with information, but does a really good job answering questions . . . you just need to know what to ask. My husband made it out the hospital without any complications and without a long hospital stay, so we felt the surgeon did a great job. Our current oncologist is also with the Ireland Cancer Center. Esophageal cancer is one of his special interests. We met him when my husband faced a recurrence in December last year. His name is Dr. Joseph Bokar. He is a straight shooter, doesn't hold anything back, but we feel we have been in good hands while working with him.

    I am including the link to Dr. Linden’s info . . . the recap says he has an interest in both Lung and Esophageal MIE. It was not offered as an option for us . . . not sure why . . . might have been because of lymph node involvement being more than what the doctor felt was OK for MIE. I have also included the link for Dr. Bokar.

    http://www.uhhospitals.org/tabid/1584/phyID/15445/Default.aspx?utm_source=sysbanner&utm_medium=uhimg&utm_campaign=physfind

    http://www.uhhospitals.org/tabid/1584/phyID/159/Default.aspx?utm_source=sysbanner&utm_medium=uhimg&utm_campaign=physfind

    Re the Cleveland Clinic, they also treat EC. The doctors that I have seen most referenced are Dr. Thomas Rice (Thoracic Surgeon) and Dr. David Adelstein (Oncologist). I am including links for them as well . . .

    http://my.clevelandclinic.org/staff_directory/physician_name_search.aspx#718

    http://my.clevelandclinic.org/staff_directory/physician_name_search.aspx#271

    I am pretty sure OSU has good facilities also. When we looked for clinical trials, they had a few going, but nothing that made sense for us.

    Hope this helps and all goes well for you. When originally diagnosed, my husband was just a little younger than yours. No history in his family nor any lifestyle issues . . . it just came out of blue!

    Take care,

    Trisha

    P. S. You will just need to copy and paste my links. I couldn't get them to be "direct" links! Sorry!
  • Unknown
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  • newbutterfly
    newbutterfly Member Posts: 7
    #7
    unknown said:

    This comment has been removed by the Moderator

    Overwhelmed with the support and so grateful.
    To all of you who have answered our request, thank you from the bottom of our hearts. Your emails , research, phone calls for us cannot be appreciated more. We are so devastated with the news and my husband feels so bad that we are on an emotional roller coaster and hardly have the emotional strength right now to handle this devastating news. We have a strong marriage and my husband has worked so hard to get us to this point in life, recovering from a layoff himself many years ago by returning to school to get a bachelors, Masters, and finally a doctorate. He now works for a university in which he helps other nontraditional students get Board of Regents degrees to pull themselves up and retrain. Now this hits and it is we who need the support and help. Thanks to all of you.
  • Unknown
    Unknown
    #8
    newbutterfly said:

    Overwhelmed with the support and so grateful.
    To all of you who have answered our request, thank you from the bottom of our hearts. Your emails , research, phone calls for us cannot be appreciated more. We are so devastated with the news and my husband feels so bad that we are on an emotional roller coaster and hardly have the emotional strength right now to handle this devastating news. We have a strong marriage and my husband has worked so hard to get us to this point in life, recovering from a layoff himself many years ago by returning to school to get a bachelors, Masters, and finally a doctorate. He now works for a university in which he helps other nontraditional students get Board of Regents degrees to pull themselves up and retrain. Now this hits and it is we who need the support and help. Thanks to all of you.

    This comment has been removed by the Moderator
  • newbutterfly
    newbutterfly Member Posts: 7
    #9
    unknown said:

    This comment has been removed by the Moderator

    WilliamWMarshall you are one of God's angels
    I have read and reread all of the information you sent and made many calls based upon your direction. No one , neither the insurance case manager , nor I from my emails was able to get the info you did and we badly needed it and quickly. Today we hit a low of the roller coaster with the emotional strain too much to handle and then to a high when we got the results of yesterday's CT scan and the surgeon's words, "looks like this thing is localized; just a small spot on the lung that we can't identify" My husband and I had been sure it had metastisized with all his side pain. The docs still don't know what is causing that. Thanks to you, our surgeon is making us an appt. with Dr. Kassis at Ohio State Univ Hospital for MIE and the insurance co has approved it. My husband will have a PET scan on Friday. The first chance Dr. Kassis could do surgery is Aug 14th but our surgeon said that is all right because radiation may be needed first. My husband has lost 21 pounds in 2 weeks but they are sending him Megace to improve his appetite. If that doesn't work then other steps will be taken. Yes we are Christians. We have a lot of people praying for us and it is helping. Every time I think of how you are helping a couple you don't even know, I get tears in my eyes. Please stay with us through this.
  • Unknown
    Unknown
    #10
    newbutterfly said:

    WilliamWMarshall you are one of God's angels
    I have read and reread all of the information you sent and made many calls based upon your direction. No one , neither the insurance case manager , nor I from my emails was able to get the info you did and we badly needed it and quickly. Today we hit a low of the roller coaster with the emotional strain too much to handle and then to a high when we got the results of yesterday's CT scan and the surgeon's words, "looks like this thing is localized; just a small spot on the lung that we can't identify" My husband and I had been sure it had metastisized with all his side pain. The docs still don't know what is causing that. Thanks to you, our surgeon is making us an appt. with Dr. Kassis at Ohio State Univ Hospital for MIE and the insurance co has approved it. My husband will have a PET scan on Friday. The first chance Dr. Kassis could do surgery is Aug 14th but our surgeon said that is all right because radiation may be needed first. My husband has lost 21 pounds in 2 weeks but they are sending him Megace to improve his appetite. If that doesn't work then other steps will be taken. Yes we are Christians. We have a lot of people praying for us and it is helping. Every time I think of how you are helping a couple you don't even know, I get tears in my eyes. Please stay with us through this.

    This comment has been removed by the Moderator

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