Just diagnosed with Stage IV and terrified! Need help please.

GWNorris
GWNorris Member Posts: 2
in Esophageal Cancer #1
It has only been two weeks since my initial endoscopy, but it feels like an eternity. I originally went in for gastritis and came out terrified with the news of the possibility of EC. Four days later when the biopsies came back it was confirmed that I have it. Then it was on to the PET scan. My wife and I figured since I didn't have any of the symptoms other than minor weight loss that it would be early stage. Well, we were wrong. It turned out to be stage IV and it is everywhere.

I thought I was in shock previous to this news. That was nothing. In fact, I think my oncologist was surprised. I should have known something was up because of the questions he was asking. I think he expected to see a skeleton in the examining room.

I zoned out when hit with this news. The Commander-in-Chief did a very good job of holding it together. In the end I have decided to do chemo in the hopes that it will go into remission. I know I will be fighting it the rest of my life. That's the story.

I know that fighting cancer also requires a positive attitude. My problem is I come from a long line of people that look at the "glass as half empty". I'm going to fight like I never fought before for something. But this is very hard for me. Help please.

Comments

  • bdotson
    bdotson Member Posts: 3
    #2
    EC
    I'm a survivor and let me tell you you're in for a fight but heads up---you can beat this! I had chemo for four months before the operation. I had a complete esophagectomy. it was not a cake walk! I was laid up for 3 months. I was on a chemo program called Magic. It was devised in the UK and was quite effective. I won't lie to you! The chemo was tough! I was lucky, because the tumor never broke through the esophagus wall. I've talked to other folks in the same boat and today you can beat this! Change your life style. After the op you'll be on a food tube until everything heals. When you finally return to real food you will have to thin alot of food from your diet! Meat and bread will be hard to swallow. Especially beef! Vegies will be your friend. I could not eat sweets,carbonated beverages and a slew of other things. How old are you? And what sort of physical shape are you in? I went to the Cleveland clinic for my operation and treatment.
  • GWNorris
    GWNorris Member Posts: 2
    #3
    bdotson said:

    EC
    I'm a survivor and let me tell you you're in for a fight but heads up---you can beat this! I had chemo for four months before the operation. I had a complete esophagectomy. it was not a cake walk! I was laid up for 3 months. I was on a chemo program called Magic. It was devised in the UK and was quite effective. I won't lie to you! The chemo was tough! I was lucky, because the tumor never broke through the esophagus wall. I've talked to other folks in the same boat and today you can beat this! Change your life style. After the op you'll be on a food tube until everything heals. When you finally return to real food you will have to thin alot of food from your diet! Meat and bread will be hard to swallow. Especially beef! Vegies will be your friend. I could not eat sweets,carbonated beverages and a slew of other things. How old are you? And what sort of physical shape are you in? I went to the Cleveland clinic for my operation and treatment.

    Thank you for your reply.
    Thank you for your reply. Unfortunately surgery is not an option for me.

    Overall I feel my physical shape is good. I'm 57. I haven't exercised regularly for a couple of years, but I have always tried to eat healthy. I'm a physical person. I physically work hard and I have quite a few chores around the home that task me physically.
  • sal314
    sal314 Member Posts: 599 Member
    #4
    You're In the Right Place
    So sorry about your diagnosis. I'm sure your still in shock.

    Attitude is everything! It can/will make you or break you. So... don't let yourself have the option of viewing things as half empty. It's always FULL! There are ALWAYS blessings, whether we can see them or not. Know that every awful thing you read about EC doesn't happen to everyone! My father never had any eating or swallowing issues. (My father was diagnosed a year ago tomorrow (3/13/10) with Stage IV that had spread to the liver. He lead a very active "normal" life while going through radiation and chemo up until the end. I wish I could tell you that he beat it, but unfortunately he didn't. He passed on Feb. 16th) None the less, he lived a full life until God called him home.

    I'm sure you'll be hearing from MANY more people shortly. There are so many wonderful, caring people here. Not to mention "experts" in EC! They may not have an M.D. after their name, but TRULY, many know much more than a lot of the so called "real experts!" I will say, if you're able, go for a second opinion. Go to a major cancer center that has doctors that specialize in EC. IT can make a world of difference in your treatment plan and quality of life.

    I will be praying for you and your family. It won't be an easy road, but you can continue to live and enjoy life. The reality is none of us know how much time we have left or have any control over our circumstances. Lean on God and he will carry you through.

    Blessings,
    Sally
  • BMGky
    BMGky Member Posts: 621
    #5
    Hate to hear of your diagnosis
    It is such a shocking diagnosis. Who has ever heard of esophageal cancer? My husband nor I sure hadn't. He went through chemo, radiation, and surgery. Very challenging. It is important that your cancer team is well coordinated. Also, listen to the fine people on this site. Each member has had to deal with the disease or as a caretaker. No question is too simple to ask. Feel free to share your fears. Most of the information on the internet has not kept up with the progress in treatment. Please let the members know where you are located, if you are at a main cancer center, and anything else you want to mention. The experienced, knowledgeable ones on this board can give helpful information. Good Luck. You and your family are in our prayers.
  • oriontj
    oriontj Member Posts: 375
    #6
    Go to a big teaching hospital
    The closest one to where you live. They have clinical trials for stage 4...my husband was in it with Erbitux and cisplatin and taxol and it was in remission for a year. It came back in the original spot so he doing chemo again.

    The big time cancer centers have all the tools to help you fight this the right way. It's so important to go an oncologist who sees this and only this...not a local person. My husband wouldn't be here today if it wasn't for the U. of Chicago and their experts.

    You can fight this even if you're a "half fuller"...I'm like that at times...mainly because I look down the line...but don't do it now. Now is the time to gather all the info you can and then find that teaching hospital...

    Where you are now is a good place to be...people will help you in ways you didn't know possible.

    Our prayers are with you.

    jan
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • GerryS
    GerryS Member Posts: 227 Member
    #8
    Sorry............
    to hear of your diagnosis. BUT YOU CAN DO IT! Surround yourself with positive people. This site will help. We will all pitch in. I too was 57 at my diagnosis. Many things to live for. You will be in my prayers.

    Gerry
  • Kathyn73020
    Kathyn73020 Member Posts: 2
    #9
    unknown said:

    This comment has been removed by the Moderator

    GW's wife here
    Sherri,

    When I found the CSN list two weeks ago, I did read your post of how EC was identified in your husband. I was sorry to read of his passing. I truly hate this disease.

    Mets are everywhere in Gary including liver. Treatment is at Optim Oncology in Oklahoma City area (Midwest City). Dr Hamilton is the oncologist recommended by both our family physician and the gastro who found the tumor. We've checked him out with a family friend who is also a physician. Dr Hamilton was trained at MD Anderson which was a little reassuring since the first inclination was to pack the family up and head there. Then we met with him this past Thursday (which was 2 weeks after the initial endoscope). I suppose we're as comfortable with him treating Gary as we can be. And if at some point, he feels a clinical trial would benefit Gary, he has said he would send us to MD Anderson.

    The plan at this point is to be very aggressive with chemo treatment. Gary went Friday for blood work to check for a gene that (I believe it was stated) makes cancer grow faster. Tuesday we have consult with surgeon, and Wednesday surgeon puts chemo port in. Dr Hamilton said he would do first chemo treatment the day after that. Plan is for 3 chemo drugs - and he told us the name but my brain went on overload at that point and I cannot remember them (the pad and pen hit the floor with the first look at the PET) If the gene is present, the 4th drug will be added. Radiation is still a possibility.

    We're on overload right now but hanging tightly to each other. Gary will be using short term disability for the present time so work won't be stressing him out. However that leaves time on his hands to spend worrying. It's a double edged sword.

    Thank you for the offer to speak with you. I would appreciate that and will send the CSN email.

    Also...thank you to everyone who has replied. I know Gary appreciates all moral support.
    Kathy
  • linda1120
    linda1120 Member Posts: 389
    #10
    Kathyn73020 said:

    GW's wife here
    Sherri,

    When I found the CSN list two weeks ago, I did read your post of how EC was identified in your husband. I was sorry to read of his passing. I truly hate this disease.

    Mets are everywhere in Gary including liver. Treatment is at Optim Oncology in Oklahoma City area (Midwest City). Dr Hamilton is the oncologist recommended by both our family physician and the gastro who found the tumor. We've checked him out with a family friend who is also a physician. Dr Hamilton was trained at MD Anderson which was a little reassuring since the first inclination was to pack the family up and head there. Then we met with him this past Thursday (which was 2 weeks after the initial endoscope). I suppose we're as comfortable with him treating Gary as we can be. And if at some point, he feels a clinical trial would benefit Gary, he has said he would send us to MD Anderson.

    The plan at this point is to be very aggressive with chemo treatment. Gary went Friday for blood work to check for a gene that (I believe it was stated) makes cancer grow faster. Tuesday we have consult with surgeon, and Wednesday surgeon puts chemo port in. Dr Hamilton said he would do first chemo treatment the day after that. Plan is for 3 chemo drugs - and he told us the name but my brain went on overload at that point and I cannot remember them (the pad and pen hit the floor with the first look at the PET) If the gene is present, the 4th drug will be added. Radiation is still a possibility.

    We're on overload right now but hanging tightly to each other. Gary will be using short term disability for the present time so work won't be stressing him out. However that leaves time on his hands to spend worrying. It's a double edged sword.

    Thank you for the offer to speak with you. I would appreciate that and will send the CSN email.

    Also...thank you to everyone who has replied. I know Gary appreciates all moral support.
    Kathy

    GW's Wife
    Kathy, I want you to know that you are in my thoughts and prayers. Hang on tight to one another as you go through esophageal cancer. It sounds like you have found a good doctor that is testing for all of the right things.

    Sherri can help you more than anyone else, so I am glad that you will be connecting with her.

    Linda

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