Where to go for stage 4 ec

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tammylouhay
tammylouhay Member Posts: 11
edited March 2014 in Esophageal Cancer #1
My dad was diagnosed with esophageal cancer in April. A Pet scan revealed hot spots on his lymph nodes. He decided to go for surgery. They opened him up, discovered that his esophagus was 90% blocked, his nodes were affected and there was a spot on his liver.They sewed him up with out removing anything. They have diagnosed him as stage 4 and his Dr can only say that it is very serious and keeps reminding him that he is terminal.

He is currently in hospital attahed to a feeding tube and oxygen as he also suffers from COPD. He is 70 years old and except for blood in his stool, had no sypmtoms and was able to eat and drink until his surgery. 8 weeks ago he and my mother were in Mexico playing tennis and had no idea that he was ill. Since the surgery we have been in the equivalent of the ICU in the thorasic unit while my dad's kidney's failed and he was hooked to a bi pap breathing machine. Today he in hospital attached to a feeding tube and oxygen. They are talking about attempting to put in a stent on Tuesday and then perhaps radiation.

We are prepared to do anything to prolong and improve his life. We can charter a plane and move him, but we need to know where to go next. Does anyone hve a doctor or facility anywhere where they have had a positive expeience. Thus far, dad's doctors are only focused on how bad his situation is. We need to find someone who can offer hope!

A desperate daughter,

Tammy

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  • Unknown
    Unknown
    #2
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  • Jules11
    Jules11 Member Posts: 8
    #4
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    Esophageal Cancer
    Hi,
    My husband at the age of 51 had his entire esophagus removed (as well as lymph nodes) - his stomach was then stretched to form a new esophagus. Dr. Fernando at Boston Medical Center in Boston MA is one of the few thoracic docs that performs this surgery. I beleive he was trained in Philadelphia. My husabd is having other issues now but if you are looking for another opinion Dr. Fernando might be able to help - he's really a nice person too!
    My best to you and your family.
    Jules
  • tammylouhay
    tammylouhay Member Posts: 11
    #5
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    unknown said:

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    Dear William,
    Thank you so
    Dear William,

    Thank you so much for your reply and information.

    I am so grateful for all of the knowledge and opinions offered on this site, and it is so comforting to know that others have travelled this path with positive results.

    Dad is currently in Calgary Alberta.

    I am hoping that he will view your posts and all of the other on the site. I have been forwarding bits to him, but know that there is so much great info that he should really be getting firsthand.

    He is having his first meeting with an oncologist on Tuesday and we are hopeful that he will be able to offer some treatment options.

    I was always concerned about the fact that Dad was rushed to a surgeon without the benefit of an oncologist's opinion. I asked him to inquire about it, but it is my understanding that a prior consult was not made available to him.

    I could rant and rave for hours about all of the politics, but will spare you for now.

    I have also forwarded to him an application package for MD Anderson which I am hoping he will consider, but because of time and the fact that he is not convinced that their success rates with this type of cancer are higher, he is staying put for now.

    I will write more as I get a chance, but wanted to let you know how much I appreciated your prompt reply!

    Tammy
  • tammylouhay
    tammylouhay Member Posts: 11
    #6
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    unknown said:

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    Dear Sherri,
    I am so sorry
    Dear Sherri,

    I am so sorry to hear of all that your family has been going through.

    You and Jim and your children are in my prayers.

    Thank you so much for taking the time to reply to me.

    I am so overwhelmed by all of the information that I am trying to sort though, but I wanted to take a minute to say how much your reply and information meant to me.

    Tammy
  • tammylouhay
    tammylouhay Member Posts: 11
    #7
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    Jules11 said:

    Esophageal Cancer
    Hi,
    My husband at the age of 51 had his entire esophagus removed (as well as lymph nodes) - his stomach was then stretched to form a new esophagus. Dr. Fernando at Boston Medical Center in Boston MA is one of the few thoracic docs that performs this surgery. I beleive he was trained in Philadelphia. My husabd is having other issues now but if you are looking for another opinion Dr. Fernando might be able to help - he's really a nice person too!
    My best to you and your family.
    Jules

    Hi Jules,
    Thank you for your
    Hi Jules,

    Thank you for your reply.

    I hope your husband is having good luck with his other issues.

    I am trying to assimilate all of the information I am gathering, but wanted you to know how much your advice and information mean to me.

    Tammy
  • unclaw2002
    unclaw2002 Member Posts: 599
    #8
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    Tammy,
    I am also a daughter
    Tammy,

    I am also a daughter and understand how difficult this is to deal with. My dad is 78, and was diagonosed Stage III, T3, N1, MO in December of 09. I insisted he get a second opinion at a recognized cancer institute that specialized in Esophageal Cancer. You can get a list of the hospitals from the National Cancer Institute. MD Anderson is excellent, I got my dad into Sloan Kettering in New York because I live in Delaware and had some contacts there. My dad was reluctant at first, the same thing they don't have that much better statistics and then I finally told him. Look dad you want to go to the best, you want to go see doctors that deal with this type of cancer every day and do surgeries all the time, you wouldn't go into battle with the b team would you. Why bet his life on the b team when he could have the A team? And even his doctor at Sloan told him don't focus on the statistics they are horrible, you are a person and everything about you is unique and so that is how we will approach and treat this cancer. Your dad's doctors already violated some of the most basic proticol in treating espohageal cancer why would you every want to put his life in their hands?

    Listen this is a hard battle, the doctors at Sloan changed my dad's treatment and he is still alive. He has been through a tremendous battle so far but he is a fighter. Although he chose to have his treatment at home --- he did get the evaluation done by the doctors at Sloan, they decided on his treatment, chemo and radiation and if he gets better and decides to get the MIE --- he will come back east to have that surgery done by an experienced surgeon at a cancer center.

    Keep the faith, this is a tough road but the people here will reach out to you and try to help.

    Best,
    Cindy
  • tammylouhay
    tammylouhay Member Posts: 11
    #9
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    unclaw2002 said:

    Tammy,
    I am also a daughter
    Tammy,

    I am also a daughter and understand how difficult this is to deal with. My dad is 78, and was diagonosed Stage III, T3, N1, MO in December of 09. I insisted he get a second opinion at a recognized cancer institute that specialized in Esophageal Cancer. You can get a list of the hospitals from the National Cancer Institute. MD Anderson is excellent, I got my dad into Sloan Kettering in New York because I live in Delaware and had some contacts there. My dad was reluctant at first, the same thing they don't have that much better statistics and then I finally told him. Look dad you want to go to the best, you want to go see doctors that deal with this type of cancer every day and do surgeries all the time, you wouldn't go into battle with the b team would you. Why bet his life on the b team when he could have the A team? And even his doctor at Sloan told him don't focus on the statistics they are horrible, you are a person and everything about you is unique and so that is how we will approach and treat this cancer. Your dad's doctors already violated some of the most basic proticol in treating espohageal cancer why would you every want to put his life in their hands?

    Listen this is a hard battle, the doctors at Sloan changed my dad's treatment and he is still alive. He has been through a tremendous battle so far but he is a fighter. Although he chose to have his treatment at home --- he did get the evaluation done by the doctors at Sloan, they decided on his treatment, chemo and radiation and if he gets better and decides to get the MIE --- he will come back east to have that surgery done by an experienced surgeon at a cancer center.

    Keep the faith, this is a tough road but the people here will reach out to you and try to help.

    Best,
    Cindy

    Thanks so much for you reply
    Thanks so much for you reply Cindy.

    I never in the world expected Cancer to be part of my world. We have no family history, and have always expected to loose dad to a heart attack. Cancer has been a mixed blessing.

    A few weeks ago after his failed surgery, my mom called us all to Calgary, where they are. My dad had had surgery, it was unsucsessful, he was crashing and nothing looked good.

    Luckily my mom insisted that they do everything that they could and my sibblings and I all got to see him, spend time with him, and he is now home waiting for radiation and chemo.

    Being able to speak to others in the same boat is keeping me sane. Thank you so much for your comments and suport.

    I hope your dad's treatment continues to be successful.

    Thinking of you and yours,

    Tammy

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