Found out stage and treatment....

tinab1127
tinab1127 Member Posts: 18
edited March 2014 in Esophageal Cancer #1
Well it has been one heck of a week as we have learned more about my brother Raymond. Wednesday Radiation consultation, Thursday first visit with the surgeon and today the Oncologist has explained when they plan to start.

Novemeber 29th is the first day of chemo and radiation. He will start with 6 hours of Cisplatin and then 4 days of 5FU, along with 5 days a week of radiation.

They have staged him as a T3N1M0. The surgeon stated that he could do surgery. (which was our biggest worry until Raymond totally broke down about hearing about the operation) He has been crying ever since. (which is something I am so not used to with him) I don't think he has researched a whole lot about this cancer and when the surgeon told him about the percentages on survival rate it has all been down hill from there with his attitude.

He told the oncologist today (while upset) that he does not think he would be able to deal with having that type of surgery. I wish I knew what to tell him to do but looking at him in this state I honestly don't know what to say other than whatever you decide I will help you.

I wished I knew the right things to say at this point but don't. Sorry for this type of message but am feeling kind of down.

Tina Bradfordd

Comments

  • cjmac49
    cjmac49 Member Posts: 100
    #2
    Hey
    Tina,

    Tell your Brother that the chemo, radiation and surgery are not for the faint of heart BUT I made it and I am two years post surgery and doing OK. If I can make it your brother can.

    If needed you - or he - can private message me and maybe I can help.

    William Marshall should be answering soon with a wealth of information about the MINIMALLY Invasive Esophagectomy surgery. I would recommend this type of surgery as it is the latest and best if your brother is a candidate. I can't even come close to the quality and quantity of information that William can provide. Heed it well!

    Good luck to your Brother, you and your famly.

    Jim
  • oriontj
    oriontj Member Posts: 375
    #3
    2nd opinion
    William will tell you go for a second opinion....to a teaching university that runs clinical trials...try to find one where he will have a chance to get the chemo Erbitux...my husband got in that arm of a trial...and he's still here, golfing...traveling...no surgery.

    No one knows for how long...but a good year is so much better than looking at survival rates....tell your brother that...a teaching university.

    I have no idea where you live but it's worth a trip to get a good second opinion.

    orion
  • Callaloo
    Callaloo Member Posts: 135
    #4
    Been there...
    I know exactly how your brother feels. Shortly after I was diagnosed, before I was fully staged, but with a CT scan suggesting I was operable, I met with a surgeon who drew a diagram of an esophagectomy. I could tell without his having to tell me, it would have unknown and certainly life-altering consequences that I did not want. Even with the new minimally invasive procedure, I couldn't imagine anything worse in my situation.

    The next day, my oncologist told me that if I were operable then I should do it. It was too risky not to. I was still unconvinced.

    Then further tests confirmed distant metastisis, and I was staged IVB, inoperable. Second surgical opinion was the same. No surgery for me. Frankly, I was somewhat relieved, but mostly devastated.

    I consider your brother to be one of the lucky ones. But that said, this is not the time to focus on prognosis or even surgery.

    The toughest time, emotionally, was between diagnosis and the start of treatment. The most helpful meeting I had during this time was with my radiation oncologist who spoke not of prognosis or statistics or what next, but simply pounded on the need to prepare for treatment – gain weight, eat frequently and a lot, with ice cream, get sleep, exercise-- like we were preparing for battle. My focus shifted to the need to start gathering my strength. This is what you should be talking about now.

    Once treatment gets underway, the focus will be shifted for him, to the daily battle against nausea, fatigue and pain. Surprisingly, this has a way of overcoming feelings of despair. And hopefully, the fighting spirit will turn towards recovery and survival, and he will be in a better frame of mind to deal with the bigger picture then.
  • Bedee
    Bedee Member Posts: 24
    #5
    Tina
    I understand how your
    Tina

    I understand how your brother feels. For me, the idea of an esphogectomy was more frightening than cancer. It seemed that everything I read and everywhere I looked all I saw and heard was about people who had the surgery and weren't able to live normally, had a reocurrence and didn't survive. I did have the surgery in April, I'm living a normal life, working, eating what I want (no candy bars) and enjoying my life. I think that is what your brother needs to hear. I'd encourage him to come to this site.

    prayers for you both
    deb
  • Bedee
    Bedee Member Posts: 24
    #6
    Tina
    I understand how your
    Tina

    I understand how your brother feels. For me, the esophagectomy was more frightening than cancer. It seemed that everything I read and everywhere I looked all I saw and heard was about people who had the surgery and weren't able to live normally, had a reocurrence and didn't survive. And the list of things that could go wrong . . I told my surgeon that if anyone went through that list again I was leaving the hospital.

    I did have the surgery, in April. I'm living a normal life, working, eating what I want (no candy bars) and enjoying my life. I think that is what your brother needs to hear. I'd encourage him to come to this site.

    prayers for you both
    deb
  • cmn412
    cmn412 Member Posts: 69
    #7
    HANG IN THERE
    I know exactly how your brother feels. Everytime I thought of the operation I would bust out in tears, I told the doctor I wasn’t going to do the operation the whole time I was taking chemo and rad.

    After much praying I put it in the Lords hands. I did the operation.
    I had the MIE surgery. I had no real problems from the surgery, just my body getting used to the new esophagus and stomach.

    Yes eating is different and will take some getting use to…. But I am alive and have a much better chance of complete recovery.

    Tell your brother we do know how he feels and come to this site for help, information and support. There are wonderful people here.

    William will tell you about the MIE surgery……DO TAKE HIS ADVICE….

    My brother also had the same cancer and surgery. His surgery was two months after mine.
    I can tell how much you love your brother by the way you talk. Just be there for him and love him and let the lord to the rest.

    Assure your brother that he is not alone, WE are here and WE have been down this path and will not lie to him. He has a good chance at his stage.

    Tell him to just do what he has to do and don’t think to much about it, just do it and put it in the lords hands and stop worrying. Take one day at a time and before he knows it he will sitting at the computer tell someone else He knows how they feel he went through it too and survived.

    I and many others will have both of you in our prayers.
    God bless.
    Love

    Callie.
  • paul61
    paul61 Member Posts: 1,392 Member
    #8
    Please tell Raymond we understand and are wishing him the best
    Tina,

    I remember when the surgeon described the surgery I was going to have (Ivor Lewis). I got a very queasy feeling in my stomach when I saw the extent of the incisions and the elements of my digestive system that would be removed.

    I would say it is normal to be depressed about the need for surgery that extensive.

    I would encourage Raymond to investigate the potential of a minimally invasive esophagectomy (MIE) as an option.

    Please tell Raymond there are many here who have had the surgery, chemotherapy, and radiation and come out the other end. It was difficult but survivable.

    Post surgery does require some life style management; but he will recover. Tell him we will be thinking about him and wishing him the best.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
    Your Brother Raymond
    Dearest Tina and Raymond
    I can understand why you are feeling the way you are. Of course it is scary. Of course you should be worried. But....Thank God that you can have the surgery! A lot of the people here, including my dad could not have the surgery! Take it easy, one day at a time. Pray, pray and pray some more! We wish you the best, and will be thinking of you and praying for you! Keep us updated.
    Tina in Va
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator
  • unclaw2002
    unclaw2002 Member Posts: 599
    #11
    Tina,
    I hope that your
    Tina,

    I hope that your brother will reconsider not having the surgery. My father at first was diagnosed as Stage III but because he was 78 and because he didn't want to consider not being able to eat and the long potential recovery from the surgery he decided he was going to beat this beast with chemo and radiation. I tried to gently speak with him and encouraged him to consider the surgery because it was the only "potential cure" and without it the cancer could come back. Fast forward by the time my dad was willing to consider the minimally invasive surgery, because the Ivor Lewis would have been to much stress on his system, he was too weak and the cancer had spread so he was no longer a candidate for surgery.

    Time is the enemy here and the only way to beat this monster we know as Esophogeal Cancer is to surgically remove it. I can tell you that my father now would be willing to take the long recovery time, the future problems eating and the rest if he could --- instead of the prognosis that there isn't much that can be done for you now that the cancer has spread. Today my dad has regained much of his strength and is driving and back to many of his old activities, although he gets tired easily. He has mets to his liver and the tumor has come back in his esophagous --- but God bless him he isn't ready to give up yet and is looking into a clinical trial for Stage IV patients at MD Anderson. But even with his health improving he can't have surgery because the cancer has spread.

    Don't let this opportunity slip through your brothers hands. I promise you there are many on this board, and many more across the country who only wish that they could take the chance to beat this cancer and have the surgery. God bless you and your brother as you deal with this.

    Prayers and hugs,
    Cindy
  • Donna70
    Donna70 Member Posts: 852 Member
    #12
    unclaw2002 said:

    Tina,
    I hope that your
    Tina,

    I hope that your brother will reconsider not having the surgery. My father at first was diagnosed as Stage III but because he was 78 and because he didn't want to consider not being able to eat and the long potential recovery from the surgery he decided he was going to beat this beast with chemo and radiation. I tried to gently speak with him and encouraged him to consider the surgery because it was the only "potential cure" and without it the cancer could come back. Fast forward by the time my dad was willing to consider the minimally invasive surgery, because the Ivor Lewis would have been to much stress on his system, he was too weak and the cancer had spread so he was no longer a candidate for surgery.

    Time is the enemy here and the only way to beat this monster we know as Esophogeal Cancer is to surgically remove it. I can tell you that my father now would be willing to take the long recovery time, the future problems eating and the rest if he could --- instead of the prognosis that there isn't much that can be done for you now that the cancer has spread. Today my dad has regained much of his strength and is driving and back to many of his old activities, although he gets tired easily. He has mets to his liver and the tumor has come back in his esophagous --- but God bless him he isn't ready to give up yet and is looking into a clinical trial for Stage IV patients at MD Anderson. But even with his health improving he can't have surgery because the cancer has spread.

    Don't let this opportunity slip through your brothers hands. I promise you there are many on this board, and many more across the country who only wish that they could take the chance to beat this cancer and have the surgery. God bless you and your brother as you deal with this.

    Prayers and hugs,
    Cindy

    Tina it can be done he is a lucky one
    Tina and Raymond,
    It is hard to face the surgery. I was the same stage T3N1M0 last fall, got my chemo, radiation with some bumps and then surgery right before Xmas, 12/8. I am now eating, walking, doing everything I did before. It took about 7 months for me to feel a little closer to normal but everyone said be patient. It is frightening to face extensive surgery. I don't know if your brother is going to get minimally invasive or Ivor Lewis. I had the Ivor Lewis, was 66. What helped me was my drs have mentors that call you up and are matched to your diagnosis and age. My mentor is a wonderful woman named Mary, a 7 yr survivor, same stage and type as mine. She told me she got thru it and I could too. They do a lot of esophagectomies at my cancer center so they had 80 yr olds that survived. As someone said, I believe it was Jim, Raymond you are a lucky one, you get to have the surgery. How many people on this board would have loved to hear those words. It is scary but it is better than not doing it and missing out on all those moments with your loved ones. Good luck and prayers for you all.
    Donna70
  • MiddleOne
    MiddleOne Member Posts: 2
    #13
    unknown said:

    This comment has been removed by the Moderator

    My Dad, 79, esophagus removal. I'm SCARED
    I have read a few of your posts to others and you seem like someone I can talk with for enlightenment, encouragement and information.

    My dad who is 79 was finally staged with T1-T2 esophageal cancer this week. Today, after meeting with a surgeon and radiation oncologist, etc. they announced he is an excellent candidate for surgery. (They scheduled him for the day after Thanksgiving). Well, I thought that was great until they told us what they had to do. No esophagus???!!! Reduce his stomach size by a third? They're also removing his gall-bladder (normally no big deal there). And I was naively thinking they'd just go in with an endoscope and cut that puppy out. Maybe radiation later if the pathology indicated it. The way the doctors talked surgery and staging, it sounded like no big deal.

    Now, I'm searching for what to expect with this kind of surgery in regards to an older man. He's holding up well at this age and I'm just terrified this is going to undo all that. Any links you can give me to your previous posts, direct advise, etc. would be greatly appreciated. Are you close to his age? How was your health when all this started? I have a million questions.
  • Unknown
    Unknown
    #14
    MiddleOne said:

    My Dad, 79, esophagus removal. I'm SCARED
    I have read a few of your posts to others and you seem like someone I can talk with for enlightenment, encouragement and information.

    My dad who is 79 was finally staged with T1-T2 esophageal cancer this week. Today, after meeting with a surgeon and radiation oncologist, etc. they announced he is an excellent candidate for surgery. (They scheduled him for the day after Thanksgiving). Well, I thought that was great until they told us what they had to do. No esophagus???!!! Reduce his stomach size by a third? They're also removing his gall-bladder (normally no big deal there). And I was naively thinking they'd just go in with an endoscope and cut that puppy out. Maybe radiation later if the pathology indicated it. The way the doctors talked surgery and staging, it sounded like no big deal.

    Now, I'm searching for what to expect with this kind of surgery in regards to an older man. He's holding up well at this age and I'm just terrified this is going to undo all that. Any links you can give me to your previous posts, direct advise, etc. would be greatly appreciated. Are you close to his age? How was your health when all this started? I have a million questions.

    This comment has been removed by the Moderator
  • K_ann1015
    K_ann1015 Member Posts: 500
    #15
    Raymond might feel better when he finds that he is not alone...
    Hi Tina,

    I want to confirm all of the posts on your thread---but won't repeat them. My dad, like Donna had same diagnosis (stage 3 EC) and surgery 12/7/09 and is doing very well. It was tough and I am proud of how hard he worked to make it through chemo-radiation, surgery, rehab, and chemo again. But if you ask my dad, he would say "Well--it beats the alternative!!!!" (of not having the surgery..and it's obvious results).

    Is there any way of sharing some of the posts with him? This EC diagnosis and treatment is so shocking since most of us had never heard of it before our loved ones were diagnosed. But once he realizes that he is not alone and that others are doing well----maybe he'll at least feel like he has a choice. I like the analogy of getting ready for a battle---but it is a battle that can be won...
    God Bless both of you!!!
    Kim
  • cjmac49
    cjmac49 Member Posts: 100
    #16
    Your Brother
    Tina,

    How are you and your Brother doing?

    Jim

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