Who is the best, what hospital is the best - help!!!

mbohmer
mbohmer Member Posts: 6
edited March 2014 in Esophageal Cancer #1
My husband was diagnosed yesterday with EC. He is 42 and in excellent health and excellent shape. This was a huge shock to everyone including the Dr. we all thought acid reflux, hernia - no big deal. The entire lower 1/3 of his abdomen is covered with tumors and the esophagus is nearly blocked. We go for the CAT scan tomorrow to see if it has spread. The Dr. is not optimistic due to the size of the area affected.

We live near Cincinnati Ohio, we have no idea what to expect, where to go, what specialist to see. We are scared crazy we have 4 children ages 19, 13, 9 and 6 and he is terrified he won't see them grow up. Does anyone know which hospitals anywhere in the surrounding 8 hours are a tier 1 hospital and a specialist. I would be more than willing to travel to UVA or Pittsburgh. I just really don't know where to go from here.

Comments

  • BMGky
    BMGky Member Posts: 621
    #2
    Sorry about your husband's diagnosis
    It is such a shock to hear the diagnosis of esophageal cancer. My husband, while older, did not have a clue. We, too, thought it a hernia. I don't know if I have ever cried as hard as I did as I began my research on the disease. This website is a Godsend. I've learned so much. Being near Cincinnati, there should be some excellent choices available to you. Pennsylvania seems to have some excellent programs. Cleveland Clinic has a highly rated program. Of course, there is Mayo and New York hospitals. I think the most important thing is to go to a good cancer center that treats esophageal cancer and understands how to attack it. It is helpful if the facility is within reasonable distance to reduce family impact. My husband had to be hospitalized twice during treatment and then again for his surgery. I've read on this website of several people with difficult prognosis receive excellent treatment. Read all you can. Don't be discouraged by statistics. Information hasn't reached some of the websites. Much progress has been made in treatment; however, EC is a dangerous disease. We chose our treatment in Kentucky and have been pleased. I don't know if your husband is a candidate for surgery, chemoradiation or what treatment. It is our personal experience that a jtube feeding tube became my husband's best friend. He lost over 70 pounds even at that. Don't be shocked if a feeding tube is recommended. From my experience, the sooner the better. I was initially taken aback by the thought of a feeding tube but the little kangaroo joey pump worked well and was easy to manage. Of importance is that you must take prompt action and treatment. There is an Esophageal Cancer Awareness Association that has good information. They sell magnets for your car mentioning esophageal cancer. We will remember you in prayers.
  • slydog11
    slydog11 Member Posts: 40
    #3
    New Diagnosis also
    Hi,

    I just wanted to pass on my support for what you're going through. Like you we were shocked at my diagnosis 3 weeks ago. It hits you like a ton of bricks. I am 56 and have 6 children and 7 grandchildren and I fear for the future.

    The day I got the official biopsy results I contacted Mass General. In three weeks I've had two chemo treatments, a PT Scan, and a CT Scan. Mine is advanced with mets to the liver and lymph nodes but I'll fight with everything I can.

    I empathize with your situation and can only say contact the best facility within your area and start treatment. Time is of the essence. I hope that you can find the right hospital within your commuting distance and wish you and your family all the best.

    Paul
  • mbohmer
    mbohmer Member Posts: 6
    #4
    BMGky said:

    Sorry about your husband's diagnosis
    It is such a shock to hear the diagnosis of esophageal cancer. My husband, while older, did not have a clue. We, too, thought it a hernia. I don't know if I have ever cried as hard as I did as I began my research on the disease. This website is a Godsend. I've learned so much. Being near Cincinnati, there should be some excellent choices available to you. Pennsylvania seems to have some excellent programs. Cleveland Clinic has a highly rated program. Of course, there is Mayo and New York hospitals. I think the most important thing is to go to a good cancer center that treats esophageal cancer and understands how to attack it. It is helpful if the facility is within reasonable distance to reduce family impact. My husband had to be hospitalized twice during treatment and then again for his surgery. I've read on this website of several people with difficult prognosis receive excellent treatment. Read all you can. Don't be discouraged by statistics. Information hasn't reached some of the websites. Much progress has been made in treatment; however, EC is a dangerous disease. We chose our treatment in Kentucky and have been pleased. I don't know if your husband is a candidate for surgery, chemoradiation or what treatment. It is our personal experience that a jtube feeding tube became my husband's best friend. He lost over 70 pounds even at that. Don't be shocked if a feeding tube is recommended. From my experience, the sooner the better. I was initially taken aback by the thought of a feeding tube but the little kangaroo joey pump worked well and was easy to manage. Of importance is that you must take prompt action and treatment. There is an Esophageal Cancer Awareness Association that has good information. They sell magnets for your car mentioning esophageal cancer. We will remember you in prayers.

    Which hospital in Ky did you use?
    Thank you for your reply. We actually live in Ky. and will go where ever I can find the best treatment. Where did you go in Ky. and what Dr. did you see?
  • mbohmer
    mbohmer Member Posts: 6
    #5
    slydog11 said:

    New Diagnosis also
    Hi,

    I just wanted to pass on my support for what you're going through. Like you we were shocked at my diagnosis 3 weeks ago. It hits you like a ton of bricks. I am 56 and have 6 children and 7 grandchildren and I fear for the future.

    The day I got the official biopsy results I contacted Mass General. In three weeks I've had two chemo treatments, a PT Scan, and a CT Scan. Mine is advanced with mets to the liver and lymph nodes but I'll fight with everything I can.

    I empathize with your situation and can only say contact the best facility within your area and start treatment. Time is of the essence. I hope that you can find the right hospital within your commuting distance and wish you and your family all the best.

    Paul

    Good Luck.
    I will keep you and your family in my prayers.
    m.
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • BMGky
    BMGky Member Posts: 621
    #7
    mbohmer said:

    Which hospital in Ky did you use?
    Thank you for your reply. We actually live in Ky. and will go where ever I can find the best treatment. Where did you go in Ky. and what Dr. did you see?

    Cancer Centers in Kentucky
    We went to the Cronin Cancer Center in Lexington, KY. It is a part of Lexington Clinic. Dr. Michael Horne is our oncologist. As our referring physician stated, he is whom I would go to. From here on out, he will be your quarterback and will take care of everything. You will not have to worry. And that he did. He scheduled every appointment; oversaw all treatment; conferred and met with the treating physicians/surgeons, etc. It was so helpful. We just showed up. The chemotherapy and radiation nurses are wonderful and very experienced. Dr. Richard Montgomery was the surgeon who performed the Ivor-Lewis procedure with Dr. Walton assisting. Dr. Montgomery is a specialist in thoracic surgery and cancer. He did a fellowship with a hospital in Pittsburgh. While I would have loved Minimally Invasive, Dr. Montgomery did not feel my husband was a candidate. The University of Kentucky has a ranked cancer center, and I have heard nothing but good things about their program. There is also a James Brown Cancer Center in Louisville, KY. Of course, two of my favorites are Vanderbilt University and Duke University but travel just could not be done. Also, I have been very impressed by Cleveland Clinic. One of my acquaintances, started in Philadelphia and transferred her care to Cincinnati, but she had a different type of cancer. I understand that some patients have a primary oncologist nearby but travel to distant cancer centers and return with instructions from the cancer center. Mr. Marshall who has posted about your message has so much information and knows a lot more than I do about facilities. If you can't get to a program he recommends, I feel that you can be in good hands in area cancer centers. I'm sure there are others. I just don't know who they are.
  • Pghmomma
    Pghmomma Member Posts: 141
    #8
    unknown said:

    This comment has been removed by the Moderator

    I agree with William
    Hello and welcome.

    I agree with William Dr. L. Is the best... My dad went to him and he truly called him "god" He works wonders.


    God Bless
    Tina
  • mbohmer
    mbohmer Member Posts: 6
    #9
    unknown said:

    This comment has been removed by the Moderator

    Thank You.
    I will follow up. I am already working on a second opinion and third opinion. I will contact Dr. Luketich via Angela. Thank you for all the information. I have begun creating a binder with copies of all tests/reports... It is so much to keep up with.
    I will take your advice and it is greatly appreciated.
    Melissa
  • mbohmer
    mbohmer Member Posts: 6
    #10
    Pghmomma said:

    I agree with William
    Hello and welcome.

    I agree with William Dr. L. Is the best... My dad went to him and he truly called him "god" He works wonders.


    God Bless
    Tina

    Thank You.
    Thank you for the information. We will follow up with Dr. L.
  • mbohmer
    mbohmer Member Posts: 6
    #11
    BMGky said:

    Cancer Centers in Kentucky
    We went to the Cronin Cancer Center in Lexington, KY. It is a part of Lexington Clinic. Dr. Michael Horne is our oncologist. As our referring physician stated, he is whom I would go to. From here on out, he will be your quarterback and will take care of everything. You will not have to worry. And that he did. He scheduled every appointment; oversaw all treatment; conferred and met with the treating physicians/surgeons, etc. It was so helpful. We just showed up. The chemotherapy and radiation nurses are wonderful and very experienced. Dr. Richard Montgomery was the surgeon who performed the Ivor-Lewis procedure with Dr. Walton assisting. Dr. Montgomery is a specialist in thoracic surgery and cancer. He did a fellowship with a hospital in Pittsburgh. While I would have loved Minimally Invasive, Dr. Montgomery did not feel my husband was a candidate. The University of Kentucky has a ranked cancer center, and I have heard nothing but good things about their program. There is also a James Brown Cancer Center in Louisville, KY. Of course, two of my favorites are Vanderbilt University and Duke University but travel just could not be done. Also, I have been very impressed by Cleveland Clinic. One of my acquaintances, started in Philadelphia and transferred her care to Cincinnati, but she had a different type of cancer. I understand that some patients have a primary oncologist nearby but travel to distant cancer centers and return with instructions from the cancer center. Mr. Marshall who has posted about your message has so much information and knows a lot more than I do about facilities. If you can't get to a program he recommends, I feel that you can be in good hands in area cancer centers. I'm sure there are others. I just don't know who they are.

    Thank You
    We did travel to the Cleveland Clinic, the Oncologist only offered us pallatative care. Surgery is not an option as the Cancer has spread to his liver 9 - 6 tumors, and more that 20 lymph nodes from his neck to his lower back. I spoke with Luketich and his view was the same - surgery is not an option for us. We are meeting with a local oncologist and I am hopeful that something positive will come of it. We live 20 minutes from Cincinnati - and I will be sending Matt's records to Duke.

    m.
  • JimsBrother
    JimsBrother Member Posts: 94
    #12
    mbohmer said:

    Thank You
    We did travel to the Cleveland Clinic, the Oncologist only offered us pallatative care. Surgery is not an option as the Cancer has spread to his liver 9 - 6 tumors, and more that 20 lymph nodes from his neck to his lower back. I spoke with Luketich and his view was the same - surgery is not an option for us. We are meeting with a local oncologist and I am hopeful that something positive will come of it. We live 20 minutes from Cincinnati - and I will be sending Matt's records to Duke.

    m.

    Very Sorry
    I'm very sorry, I thought maybe clinical trials might be an option for you but was unable to find anything in Ohio that might be worth looking into. If you haven't already, you might look into them. There is some information on this site that will lead you to the right places to at least check.

    I wish you the best. My prayers are with your family.

    Rob
  • unclaw2002
    unclaw2002 Member Posts: 599
    #13
    For the largest number of
    For the largest number of clinical trials you may want to contact either M.D. Anderson in Houston http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/esophageal-cancer/index.html , or Sloan Kettering in New York, New York http://www.mskcc.org/mskcc/html/331.cfm and the NIH in Bethesda http://www.clinicaltrials.gov/ for a general listing (you will have to cut and paste the address). If you are accepted in an NIH trial in Bethesda they usually pay travel and a daily stipend if you are out of the area. Also go to the National Cancer Institute at http://www.cancer.gov/cancertopics/types/esophageal and you can search for clinical trials and also get a listing of top tier cancer hospitals with specializations. With the abdominal involvement and the tumors you may want to see if there are specialists for that as well.

    I had a collegue who had abdominal tumors everwhere (according to her)who travelled from Texas to Georgetown I believe because they were the only ones who offered her treatment (she is still with us) and apparently in remission right now when everyone else told her there were no options. If you are interested I could call her and find out the exact condition she had and the name of her treating physician.

    Good luck,
    Cindy
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #14
    mbohmer said:

    Thank You.
    I will follow up. I am already working on a second opinion and third opinion. I will contact Dr. Luketich via Angela. Thank you for all the information. I have begun creating a binder with copies of all tests/reports... It is so much to keep up with.
    I will take your advice and it is greatly appreciated.
    Melissa

    Hello Melissa and Dad-
    Hello Melissa and Dad- Welcome to our ec discussion board family. I have been following your dad's story. Melissa, you are doing an excellent job! Dad is lucky to have you in his corner! I was a caregiver for my dad, his right hand girl...I can totally relate. My dad lost his battle in March. I agree with William and the others to get that 2nd maybe even a 3rd opinion. I live in Va, so we went to UVA. Wonderful hospital. I have also heard nothing but good things about Duke. Either path you take, I know you will be pleased. There is another daughter on here, Kim? whose dad went to Duke and is doing excellent. I am sure she will reply to you. Keep in touch. We will be thinking and praying for you. The binder....great idea! You will need it to look back on things. Peace to you all.
    Tina

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