It's not all rainbows and puppies

TRK411
TRK411 Member Posts: 18 Member
edited June 2011 in Esophageal Cancer #1
I've been lurking around for a while, but I figured that I would share my family's experience with EC and MIE. My dad (age 60) was diagnosed in January with stage 3 and subsequently received chemoradiation. My dad had the MIE with Dr. Luketich at Presby on May 20, 2011. Although he came out of the 12 hour surgery doing surprisingly well, it has been nonstop since then. They were ready to move him out of SICU on Monday, but then he had trouble breathing. They re-intubated him, which lasted for 5 days. We were told conflicting reports regarding leaks - some told us there were small leaks, some said no leaks. They went in to confirm with an endoscopy, which indicated that the anastomosis was 30% deficient. Subsequent procedures suggested that the leak was then 50% and then 80% deficient. He has been in and out of the OR, with the most recent time being this Monday. They were not sure if they could put a stent in, but also indicated that they may have to do and esophageal diversion. Luckily, they were able to place a stent. In the last 5 weeks my dad has had pneumonia twice and has been intubated 4 times. Today, they went in to put a filter in his vena cava due to possible blood clots. To make matters worse, he has experienced acute renal failure and requires dialysis. He has been in and out of afib and has had his heart stop 5 times. To address this, he also had to have an external pace maker placed. Although the above is not necessarily in chronological order, there have been considerable complications from the MIE in a generally healthy man.

With regard to the staff, I can say that the nurses and doctors are great. They are willing to speak to you at any time and take great care of my dad. We have also requested to speak to Luketich, who met with us promptly. However, in our 5 weeks at Presby, we have met 3 other families that have had very similar situations. In fact, the man next to my dad is in dire straights with an exceptionally poor prognosis due to complications.

The purpose of this post is not to scare anyone. I know that the complications of the MIE are supposed to be lower than traditional approaches, but I simply think that the complications are understated. The one doctor said that they see 1 or 2 cases like my dad per year. Well, I know of 4 thus far. Yes, Dr. Luketich is a brilliant surgeon, but please don't let that make you complacent. There are serious risks from this surgery and it is not all rainbows and puppies like some make it out to be.

Tom

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • linda1120
    linda1120 Member Posts: 389
    #3
    I am so sorry about your father's complications
    Dear Tom,

    I am so sorry about your father's complications. My husband is 69 years old and was diagnosed September 7, 2010 with stage III ec. He went through chemo and radiation and spent two weeks in the hospital coming close to death. Due to this website we went for a second opinion. We live in Coeur d'Alene, Idaho and went to a teaching hospital in Portland, Oregon (Oregon Health & Science University)that specializes in MIE's for EC on the West Coast. Jim had his surgery January 5th of this year. He will be six months out July 5th. Jim had a disadvantage going into his surgery as he has aortic valve stenosis, which means his aortic valve has calcified to a very small opening. His heart has to work much harder than a healthy heart. He will have to have open heart surgery upon full recovery. This increased his risk of complications, however he had no choice as the cancer was of even more concern. He also had a pacemaker due to prior afib. The surgical team chose a cardio anesthesiologist team due to his heart situation. After his surgery he was sent to cardiac ICU. He too had to be re-intubated due to problems and went into afib and it was a very critical time. The surgery is so close to the heart that this can be a common complication, even with the MIE. Jim spent 5 days in CICU and a total of nine days in the hospital. I was told at one time he could go either way. It was a very stressful time and we were told if he had had the Ivor-Lewis or any other "open" surgery he would not have made it. Fortunately Jim had no evidence of disease due to the chemo and radiation. The four lymph nodes were cancer free, the tumor gone, and all of the 30 lymph nodes tested came back negative. He did get pneumonia two weeks after the surgery and that was difficult to overcome. This last ten months has been very difficult for us both, but we are so grateful we caught in time to have surgery. We did not take this surgery lightly, we knew he was in for the fight of his life. Our surgical team gave us step by step information regarding the surgery and the complications that could occur. The recovery is also long and arduous. Please know this, it won't be a few months, especially with all that your dad has gone through. It will take a very long time and he will never ever be the same. I don't want to frighten you by stating this, but I have seen this with my husband, and I too am a advanced cancer survivor of 12 1/2+ years and when you go through extensive altering surgery your body reacts to it in various ways. Would we change the outcome? Heavens no, we are both alive and together and with our family.

    I am sorry that you believed this surgery was understated. Even though it is a MIE, it is still major surgery, and extremely serious. I will pray for your father and your family. I remember how frightened my grown children were and still are with their dad going through ec and this surgery. We want to believe with all of our hearts that their dad is going to be the exception to the rule and beat this cancer, but we know the statistics and that fear "lurks" in the back of our minds.

    So far Jim has beat the odds, and we are praying that God will give us no evidence of disease on his catscan on July 8th.

    God bless you and your family,

    Linda
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    Thinking of You
    Hello Tom
    So sorry to hear that your dad is having so many complications. Thank you for your honesty and your story. Just wanted to let you know I am thinking of you, your dad and your family. I am sending a hug to all of you. let us know how he is doing when you can. Peace be with al of you.
    Tina in Va
  • TRK411
    TRK411 Member Posts: 18 Member
    #5
    Tina Blondek said:

    Thinking of You
    Hello Tom
    So sorry to hear that your dad is having so many complications. Thank you for your honesty and your story. Just wanted to let you know I am thinking of you, your dad and your family. I am sending a hug to all of you. let us know how he is doing when you can. Peace be with al of you.
    Tina in Va

    Thank you all for your
    Thank you all for your support and words of encouragement. Today, dad is doing much better. They performed a tracheostomy this morning, which has had an amazing impact on his spirits. He is much more comfortable and relaxed. He is already off of the vent and breathing on his own. Hopefully we only go forward from here!

    I am a psychologist and researcher by trade, so I have been researching this topic and have read more studies than what I care to admit :) At the end of the day, yes, everything is all statistics. They do not predict what will happen. Unfortunately, my dad was in the small percentage that experience such problems. However, we continue to pray for his health and longevity. Again, thank you all for your support!
  • jojoshort
    jojoshort Member Posts: 230 Member
    #6
    TRK411 said:

    Thank you all for your
    Thank you all for your support and words of encouragement. Today, dad is doing much better. They performed a tracheostomy this morning, which has had an amazing impact on his spirits. He is much more comfortable and relaxed. He is already off of the vent and breathing on his own. Hopefully we only go forward from here!

    I am a psychologist and researcher by trade, so I have been researching this topic and have read more studies than what I care to admit :) At the end of the day, yes, everything is all statistics. They do not predict what will happen. Unfortunately, my dad was in the small percentage that experience such problems. However, we continue to pray for his health and longevity. Again, thank you all for your support!

    wishing you and your family the best
    Hello Tom,
    Like Tina, I appreciate your honesty and observations. This is a tough road and no-one knows what the future holds for any of us. I am wishing you and your family the best.

    Jo-Ann

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