new here and to esophageal cancer

tgh30111
tgh30111 Member Posts: 7
in Esophageal Cancer #1
My husband has recently been diagnosed with esophageal cancer at the bottom of the esophagus. The PET scan showed a few lymph nodes affected also in the clavicular area. He has started chemo of 1 treatment every 3 weeks and radiation 5 days a week for around 33 visits that we know of.

After reading here, I am wondering why they have told him that he is not really a candidate for surgery since it has went to the lymph nodes, as I have read several people have had lymph nodes removed.

He is also losing weight so they are more than likely going to have to insert a feeding tube at least for right now. He can swallow but the treatment has made him lose his appitite and he has a horrible taste in his mouth, also some pain in the stomach area.

Also has anyone had the proton beam treatment for this. They have not really said a stage of his cancer but that surgery would be out.

We have some of the best docs as far as radiation specialists and oncologists here in Knoxville, so I am just wondering if I should check out other options?

Thanks for any information as we are kind of overwhelmed at this point.

Comments

  • TerryV
    TerryV Member Posts: 887
    #2
    Welcome and Sorry~
    I am so sorry that you had to find us, but so glad that you did. The "generic" information found out on the Internet is so out of date that recent technological advances are not taken into consideration, making the numbers very scary. Your best information about EC will be found right here. William is kind of the "father" of the board and will be along with some information about EC, Staging, and options detailed for you. He comes at this with both personal experience and research. His information is quality and can be trusted.

    Again, I'm so sorry for your husband's diagnosis. I am, however, glad you found us. We are here to support as only those traveling EC as a patient, as a caregiver, as a friend, can know....

    Terry
    Wife to Nick
    dx Stage 3, May 19, 2011
    THE surgery Sept. 8, 2011
  • chemosmoker
    chemosmoker Member Posts: 501
    #3
    Welcome Neighbor...
    tgh30111,

    We live 35 miles away from you, in Lancing, Tennessee. I travel to Nashville to Vanderbilt as that's where I grew up and where family is, but I know right where you are! So welcome neighbor! Click on our NAMES and pictures to read our "ABOUT ME" pages to learn more about us...

    I hate to use the words every time, but WELCOME to our little world here.
    We are glad you found us and you will find a wealth of support and information here and some really good friends, too.

    When the cancer has spread beyond the area right around the esophagus and/or stomach, you instantly become a NON candidate for surgery, as I did. Usually the STAGING has to be completed before any treatment can take place, so more than likely they just haven't told you the stage. Sounds like Stage IVa since it has spread. That leaves chemo and radiation only as the choices. While they Do remove nodes in the surgery, they usually will NOT do any surgery when it has already spread to outlying lymph nodes like in your case, or mine.

    I am a stage IVb, no surgery possible, and palliative care only. But we learn to make the best of it and fight the good fight, as life is so worth that, as our our loved ones.

    William and Sherri should be along before too long, along with many others, to offer you some needed words of great wisdom and truth. Read those, they are the resident 'experts' and I have learned a wealth from them.

    Being a caregiver, which you are officially now, is a tough role indeed. You will NEED the support of this group and all the help you can get. I know my wife did!

    We wish you all the best. PLEASE post often, come back often and remember-there is NO stupid question, and you can NEVER ask too many!!

    May God bless you and bring you calm and peace in your journey.
    We are all in this together and we are here for each other, we are here for you.
    Glad you are here.

    -Eric
  • jojoshort
    jojoshort Member Posts: 230 Member
    #4
    chemosmoker said:

    Welcome Neighbor...
    tgh30111,

    We live 35 miles away from you, in Lancing, Tennessee. I travel to Nashville to Vanderbilt as that's where I grew up and where family is, but I know right where you are! So welcome neighbor! Click on our NAMES and pictures to read our "ABOUT ME" pages to learn more about us...

    I hate to use the words every time, but WELCOME to our little world here.
    We are glad you found us and you will find a wealth of support and information here and some really good friends, too.

    When the cancer has spread beyond the area right around the esophagus and/or stomach, you instantly become a NON candidate for surgery, as I did. Usually the STAGING has to be completed before any treatment can take place, so more than likely they just haven't told you the stage. Sounds like Stage IVa since it has spread. That leaves chemo and radiation only as the choices. While they Do remove nodes in the surgery, they usually will NOT do any surgery when it has already spread to outlying lymph nodes like in your case, or mine.

    I am a stage IVb, no surgery possible, and palliative care only. But we learn to make the best of it and fight the good fight, as life is so worth that, as our our loved ones.

    William and Sherri should be along before too long, along with many others, to offer you some needed words of great wisdom and truth. Read those, they are the resident 'experts' and I have learned a wealth from them.

    Being a caregiver, which you are officially now, is a tough role indeed. You will NEED the support of this group and all the help you can get. I know my wife did!

    We wish you all the best. PLEASE post often, come back often and remember-there is NO stupid question, and you can NEVER ask too many!!

    May God bless you and bring you calm and peace in your journey.
    We are all in this together and we are here for each other, we are here for you.
    Glad you are here.

    -Eric

    Yes, "Welcome" here
    Well said, Eric.
    The hope for all Stage IV's is that the chemo and radiation will knock it back to Stage III, thereby making surgery a possibility.
    I do believe there have been some here.
    Please come back and keep us posted,
    Jo-Ann
  • AngieD
    AngieD Member Posts: 493
    #5
    Also new
    tgh,

    I know that overwhelmed feeling! I've been reading these boards every day for several weeks, but this is my first time to post.
    My husband's case is very similar to your husband's. Larry was diagnosed in late June. The PET showed a tumor in the lower esophagus with some surrounding lymph nodes and also some in the clavicular area. Nothing showed in any other organs, but, in his case, they said the distant lymph nodes made it Stage 4. The plan is to get the longest life with the greatest quality---and to just ignore all the scary statistics and words--"no surgical options", "palliative", etc. He is getting ready to start his 4th round of chemo: IV Oxaliplatin on day 1, Xeloda (oral) days 1-14, week off, start over. After the 2nd round, a CT scan showed "significant improvement". We suspected that since his original symptoms of esophageal spasms and food getting stuck went away after the first week of chemo. So, we're anxiously awaiting a PET scan after this round. So far, the only side effects have been cold sensitivity (which is a given with Oxaliplatin) and fatigue. You do have to be vigilant about staying well hydrated. He has had to get IV fluids twice. Apparently, once you get slightly dehydrated (so easy to do in the hot summer weather), you can't drink enough to catch back up. His symptoms both times were dizziness on standing up due to BP dropping.
    Some things we have found helpful:
    1)I'm a researcher--him, not--But I feel better if I feel like we're doing the best things we can at the time. I asked the oncologist about the proton therapy and she said that would be something to explore down the road, but not first line.
    2) Set some goals or plans in the near future to look forward to
    3) Try to take and enjoy one day at a time
    4) Ask your doc as well as his about antidepressants. It can be very helpful when you've been blindsided with the diagnosis and a whole new world of information to process, appointments, etc.
    5) Share with friends and family
    It is early days for us in this fight and there are many other caring people here with lots more experience. And it's so good to know you're not alone with this awful disease.

    I'll keep you and your husband as well as the others here in my thoughts and prayers.

    Angie
  • adube
    adube Member Posts: 63
    #6
    Hi TGH & Angie
    Regrettably, welcome you two! I'm a newbie myself, only joined last week, but your situations sound similar to my dads. As far as the "inoperable" nature of the tumor, it's my understanding that it's not that the tumor can't be removed, it's that the best course of action is a systemic chemo treatment that will attack any and all cancerous cells throughout the entire body. At this stage, the cancer is so advanced that removing the tumor will not fix the problem, so the idea is to eliminate the cancer elsewhere so the only thing that's left is the tumor (and hopefully a smaller version of it). Like the others said, maybe after a few treatments the nodes will be better and then an operation could be in order. It all depends on how he responds to the systemic chemo.

    Anyway, welcome aboard! Am i even qualified to say that now? If you have any questions or concerns or just need someone to understand what you're going through, please feel free to message me. This board has become an invaluable tool for me in our fight and I hope you find it to be a similar asset. I'll be keeping you and your husband in my thoughts and prayers.

    All my love,
    Alissa

    (daughter of Mike, Stage IV)

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