Questions and Need Information Please

Ladylacy
Ladylacy Member Posts: 773 Member
in Esophageal Cancer #1
My husband was diagnosed with cancer at the cervical of the esophagus. This was after having laryngeal cancer and undergoing 35 radiation, 2 chemo and laryngectomy with reconstruction of his throat 15 months ago.

When we met with the medical oncologist he said that Joe would be undergoing 4 chemo treatments, once a week of carboplatin. Now he is telling us that we misunderstood him and that he would have the chemo weekly while undergoing radiation. He has had 14 radiation treatments and 3 chemo. Is this the way they do it? We know that the tumor is small and hasn't spread. It was discovered during a procedure to insert a TEP.

We were also told that surgery is not really an option due to complications from his previous surgery and radiation. Surgery could be done but right now 4 doctors all agreed that the radiation and chemo is the way to go due to the size of the tumor. Who would do this type of surgery? My husband is 75 and had been in good health until 2010 when the largyneal cancer was found. My concern is that he is already loosing weight and that is something he can afford to do. Always has been too skinny for his height. Yes he has a PEG tube and is using is due to all the mucus and throat swelling. I am also worried about all the radiation and his carotid arteries.

Any information and help would be greatly appreciated.

Sharon

Comments

  • mardigras
    mardigras Member Posts: 215 Member
    #2
    Hello Sharon
    I'm so sorry that you find yourself here, but welcome to our family.
    I so wish that I could help you, but my experience as a caregiver for my husband's EC doesn't really have an similarities to your husbands EC. I just wanted to welcome you
    and hope that someone here will pick up the message and try and help.
    I would however suggest that you ask for a second opinion. I am sure that if you managed
    to speak to another doctor, they may be able to explain things to you a little better.
    Blessings to you and your family.
    Hugs and prayers,
    Marci
  • BobHaze
    BobHaze Member Posts: 165 Member
    #3
    Second Opinion!
    Hi Sharon:

    My situation, too, was different than your husband’s, but all EC patients share some common needs, as do all surgical candidates. Absolutely first and foremost, in my opinion, is that a second opinion is always indicated, particularly when there are complicating circumstances, as it sounds like is your husband’s case. And that second opinion should be from a major cancer center, preferably one that specializes in gastric cancers like EC.

    As for the surgeon, it must be a Thoracic Surgeon, and should DEFINITELY be one with extensive experience with 1 of the 3 types of Esophagectomy: Trans-Thoracic Esophagectomy (TTE), Trans-Hiatal Esophagectomy (THE), or Minimally Invasive Esophagectomy (MIE). As with all surgeries, the appropriate procedure will depend on each patient’s particular circumstances, and only an experienced thoracic surgeon can make that decision.

    So I’d recommend that your very next step should be to get that second opinion and go from there. As you’re aware, this is a life-and-death situation that must be aggressively addressed. Depending on where you live and how much you’re willing and able to travel, folks on this board have been treated at the University of Pittsburgh Medical Center, Massachusetts General Hospital in Boston, University of Michigan Medical Center, MD Anderson in Houston, University of Washington’s Fred Hutchinson Cancer Center, and University of California Irvine. I’m sure there are others, but those come to mind.

    Please get that second opinion so you and your husband can make the best informed decision. Best of luck to you.

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11
  • captdave
    captdave Member Posts: 153
    #4
    Sharon, I'd like to echo
    Sharon, I'd like to echo what Bod has said. A second opinion is a must! Also a thoracic surgeon is the only surgeon you want. There are, in my area of the country, western Washington, several surgeons who are not thoracic surgeons who preform esphogectomies. I know of only one I would feel comfortable going to but, only if the top thoracic surgeons weren't available. As Bob said treatment at a major top quality cancer center is a must! If your husband is a surgical candidate you want to have his surgery performed at a top notch cancer facility by a top notch world class doctor. When I was diagnosed with EC I had a great Doctor at Fred Hutch who guided me through the decision making process on what type of treatment and where to get treatment, best surgeons around the country etc... I will never forget her telling me the mortality rate for esphogectomies is much higher then for general surgeries and when you don't receive treatment at a major cancer center of excellence, as she called them, the mortality rate sky rockets. You need every advantage you can have fighting this disease. make sure you get the very best possible surgeon at the very best possible medical center and give your husband the very best odds possible.

    I had my THE at the University of Washington medical center. My surgeon Michael Mulligan is a rock star! If you live in the northwest I would highly recommend Dr. Mulligan to you. He has also performed THE's on two of my cousins who also speak very highly of him. I didnt know he had operated on my cousins until after my surgery. Bob has listed some excellent medical centers who all have top notch facilities and surgeons.

    What ever you do get a second opinion from a major cancer center of excellence and get the very best surgeon you can.

    There are a lot of people here with a lot of information to share, take advantage of the wisdom and knowledge of those that have lived through this. They are here to help.

    Dave
  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #5
    captdave said:

    Sharon, I'd like to echo
    Sharon, I'd like to echo what Bod has said. A second opinion is a must! Also a thoracic surgeon is the only surgeon you want. There are, in my area of the country, western Washington, several surgeons who are not thoracic surgeons who preform esphogectomies. I know of only one I would feel comfortable going to but, only if the top thoracic surgeons weren't available. As Bob said treatment at a major top quality cancer center is a must! If your husband is a surgical candidate you want to have his surgery performed at a top notch cancer facility by a top notch world class doctor. When I was diagnosed with EC I had a great Doctor at Fred Hutch who guided me through the decision making process on what type of treatment and where to get treatment, best surgeons around the country etc... I will never forget her telling me the mortality rate for esphogectomies is much higher then for general surgeries and when you don't receive treatment at a major cancer center of excellence, as she called them, the mortality rate sky rockets. You need every advantage you can have fighting this disease. make sure you get the very best possible surgeon at the very best possible medical center and give your husband the very best odds possible.

    I had my THE at the University of Washington medical center. My surgeon Michael Mulligan is a rock star! If you live in the northwest I would highly recommend Dr. Mulligan to you. He has also performed THE's on two of my cousins who also speak very highly of him. I didnt know he had operated on my cousins until after my surgery. Bob has listed some excellent medical centers who all have top notch facilities and surgeons.

    What ever you do get a second opinion from a major cancer center of excellence and get the very best surgeon you can.

    There are a lot of people here with a lot of information to share, take advantage of the wisdom and knowledge of those that have lived through this. They are here to help.

    Dave

    Thank you for your replies
    We have had second opinions and so far they are saying surgery would be very complicated due to the location of the tumor (right below my husband's stoma) at the very beginning of the esophagus. Surgery has not been ruled out, except by my husband. And from what I have found by doing research, radiation and chemo is the way to go. My husband is being treated at Emory Winship Cancer Center in Atlanta, GA. This is where he had his larynectomy but was not the place where he had his radiation and chemo for the laryngeal cancer and you know, hindsight, is where we should have gone to begin with. We have met many cancer patients dealing with all types of cancer while waiting for chemo and radiation treatments. And I can honestly say that everyone we have come in contact with at Emory are great and more than willing to help in any way they can.

    Sharon

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