I hate this disease and what it does to people - it's just not fair

hopefull08
hopefull08 Member Posts: 18
edited March 2014 in Esophageal Cancer #1
My Dad was supposed to have the surgery to remove the tumor on 12/11/08. The surgeon went in and the cancer has grown outside of the esophagus, around his aeorta, and around his stomach - so they closed him back up. We talked to the oncologist last night and was told that he could do chemo - it's not a cure but it will shrink it - may have to play around with the recipe. We asked what happens if we don't do chemo - the tumor in the esophagus will grow and eventually, he won't be able to swallow or the tumor will squezze the aeorta, and the tumor will end up pressing on vital organs and he would only have months to live.

For right now, our thoughts are to get him out of the hospital. As for treatments - I don't know if he can take more chemo, it was so hartd on him last time. The oncologist assures us that the reason it was so hard was because it given at the same time as the radiation. I also don't know if I can go through the chemo - sitting by and seeing him in so much pain and him being sick - he's wilting away and is in pain right now.

I am trying to be a trooper around everyone but all I really want to do is curl up in a ball all by myself and cry. I hate this disease and what it does to people - it's just not fair.

Is there anyone out there that is stage IV and couldn't have the surgery? If so, are you doing chemo and how are the effects without radiation? I know that everyone handles it differently but I would like to how you took it.

Comments

  • NGC1514
    NGC1514 Member Posts: 46 Member
    #2
    Stage 4 Disease
    I am sorry to hear what your Dad has been going through. It's not often these days that the extent of the disease is so unknown that surgery is started but not completed. It was more common a few years back... not that's of any help or consolation to you.

    While I was not a Stage 4, I can say that chemo - without radiation - wasn't difficult at all. I worked the whole time while undergoing 12 weeks of chemo (Cisplatin, Taxol and 5FU) and didn't even suffer nausea. But, as you say, everyone does handle it differently.

    There have been some people who have made wonderful recoveries from Stage 4 disease. We have a guy in Atlanta who was Stage 4 - main esophageal tumor and mets to the lungs - who is now an 8 year survivor. The longest survivor I know was diagnosed more than 35 years ago with Stage 4. But.. I don't wish to give false hope where none may exist and should tell you that the tumors in both cases were not as large and invasive as it sounds your father's is.

    Yes, it is an awful disease which carries off far too many of those diagnosed with it. I hope your Dad does ok.

    Eric in Atlanta
  • hopefull08
    hopefull08 Member Posts: 18
    #3
    NGC1514 said:

    Stage 4 Disease
    I am sorry to hear what your Dad has been going through. It's not often these days that the extent of the disease is so unknown that surgery is started but not completed. It was more common a few years back... not that's of any help or consolation to you.

    While I was not a Stage 4, I can say that chemo - without radiation - wasn't difficult at all. I worked the whole time while undergoing 12 weeks of chemo (Cisplatin, Taxol and 5FU) and didn't even suffer nausea. But, as you say, everyone does handle it differently.

    There have been some people who have made wonderful recoveries from Stage 4 disease. We have a guy in Atlanta who was Stage 4 - main esophageal tumor and mets to the lungs - who is now an 8 year survivor. The longest survivor I know was diagnosed more than 35 years ago with Stage 4. But.. I don't wish to give false hope where none may exist and should tell you that the tumors in both cases were not as large and invasive as it sounds your father's is.

    Yes, it is an awful disease which carries off far too many of those diagnosed with it. I hope your Dad does ok.

    Eric in Atlanta

    My Dad
    Thank you Eric for your kind words. Well, we did one treatment but it was just to hard on my Dad. He's not eating or drinking and had the feeding tube taken out because he refused to use it. We were in the hospital last week because his crit had gotten down to 18 and he was having chest pains - he was discharged Friday. He now has shingles. He's still havign trouble breathing and can't do anything without getting out of breath. I do not believe that he has much time left. The doctor asked if we wanted hospice but Dad said that he didn't want anyone to come to his house - he's ashamed that it is dirty. I told him that I would be more than happy to come over and clean it but he doesn't want to impose. I talked to him Saturday about going and living with his brother and then getting hospice to come over there. He said that he would think about it. He's been talking about going to live with him and I really do wish that he would. I am a little bit scared of what's going to happen - I'm going to be the one to find him when he passes and I just don't know if that is something that I can handle. He told me that he is really tired and is just ready for this to be over and I told him that I understood. He says that he is worried about us - I told him there is no need to worry about anyone, we will be ok. And as for my girls (who are 6 and 15 months) - they will always know about him and he will be watching over us. I know that he is tired and I don't want him to suffer any more. I will have to say that seeing my Dad go through this from the beginning is going to help me deal with his passing. Unlike my Aunt and Uncle - who have not been there near as much as I think they should have been - I believe that they are going to have a hard time dealing with it.

    Thank you for replying
    Lisa
  • GolfingDeb
    GolfingDeb Member Posts: 8
    #4
    hopefull08 said:

    My Dad
    Thank you Eric for your kind words. Well, we did one treatment but it was just to hard on my Dad. He's not eating or drinking and had the feeding tube taken out because he refused to use it. We were in the hospital last week because his crit had gotten down to 18 and he was having chest pains - he was discharged Friday. He now has shingles. He's still havign trouble breathing and can't do anything without getting out of breath. I do not believe that he has much time left. The doctor asked if we wanted hospice but Dad said that he didn't want anyone to come to his house - he's ashamed that it is dirty. I told him that I would be more than happy to come over and clean it but he doesn't want to impose. I talked to him Saturday about going and living with his brother and then getting hospice to come over there. He said that he would think about it. He's been talking about going to live with him and I really do wish that he would. I am a little bit scared of what's going to happen - I'm going to be the one to find him when he passes and I just don't know if that is something that I can handle. He told me that he is really tired and is just ready for this to be over and I told him that I understood. He says that he is worried about us - I told him there is no need to worry about anyone, we will be ok. And as for my girls (who are 6 and 15 months) - they will always know about him and he will be watching over us. I know that he is tired and I don't want him to suffer any more. I will have to say that seeing my Dad go through this from the beginning is going to help me deal with his passing. Unlike my Aunt and Uncle - who have not been there near as much as I think they should have been - I believe that they are going to have a hard time dealing with it.

    Thank you for replying
    Lisa

    Lisa, sounds like you have a
    Lisa, sounds like you have a good grasp of what's going on and that certainly has to give you some peace of mind. Enjoy this time with him and do what you can do. This is a very nasty cancer and I pray that someday, maybe my grandsons, will come up with THE CURE. In the meantime, we all take on our own individual fights and deal with the blows as they come.
    My husband(a very young, athletic 61yo) is battling this cancer, dxd with stage 4 in July and still in hospital.
    Thanks for sharing your story, it does help us all to deal with it.
    Please know you and your dad and your family will be in my prayers tonight.
    Debe in San Diego
  • stooch4
    stooch4 Member Posts: 2
    #5
    stage 4
    I am sorry to hear of your plight. I had chemo, radiation and the Ivor Lewis to remove the esophagus. The cancer has returned to my lungs. My wife and I do not know what to do. I see where there is a 5% survial rate for esophageal cancer that has metasisized. I do not think I can handle chemo again. I weighted 140 before, now I'm 118 becasue of the surgery. We are trying some alternatives but I do not know what works and what doesn't Any ideas?
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    stooch4 said:

    stage 4
    I am sorry to hear of your plight. I had chemo, radiation and the Ivor Lewis to remove the esophagus. The cancer has returned to my lungs. My wife and I do not know what to do. I see where there is a 5% survial rate for esophageal cancer that has metasisized. I do not think I can handle chemo again. I weighted 140 before, now I'm 118 becasue of the surgery. We are trying some alternatives but I do not know what works and what doesn't Any ideas?

    Dear Stooch4, Hello, I am
    Dear Stooch4, Hello, I am new to this site. I feel so bad for you at this time. Not sure where you at now,since it is Novemember 23, 2009. I do feel for you. My father, Ray, was diagnosed with EC in November 2008. He had oral chemo and radiation treatments. Drs did not want to do the surgery, said he would most likely not survive it, or if he did, his quality of life would be poor. I am hoping you did go for the chemo again, and that you are doing better. Hoping that you have gained back some weight. God bless you and your wife.
  • oriontj
    oriontj Member Posts: 375
    #7
    My husband is not having the
    My husband is not having the surgery...we find out the 4th after the Pet Scan how everything is..the endoscopic was clean...

    He had chemo and radiation at the same time...3 different drugs..had no problems with it that were serious...some pretty bad radiation burns that a cream cleared up immediately.

    I don't know about long term...our journey has just started...but I'm hopeful
  • NanseB
    NanseB Member Posts: 16
    #8
    NGC1514 said:

    Stage 4 Disease
    I am sorry to hear what your Dad has been going through. It's not often these days that the extent of the disease is so unknown that surgery is started but not completed. It was more common a few years back... not that's of any help or consolation to you.

    While I was not a Stage 4, I can say that chemo - without radiation - wasn't difficult at all. I worked the whole time while undergoing 12 weeks of chemo (Cisplatin, Taxol and 5FU) and didn't even suffer nausea. But, as you say, everyone does handle it differently.

    There have been some people who have made wonderful recoveries from Stage 4 disease. We have a guy in Atlanta who was Stage 4 - main esophageal tumor and mets to the lungs - who is now an 8 year survivor. The longest survivor I know was diagnosed more than 35 years ago with Stage 4. But.. I don't wish to give false hope where none may exist and should tell you that the tumors in both cases were not as large and invasive as it sounds your father's is.

    Yes, it is an awful disease which carries off far too many of those diagnosed with it. I hope your Dad does ok.

    Eric in Atlanta

    Eric in Atlanta
    I am just curious where you were treated in the Atlanta area. My mom has EC and just had her pet scan today after chemo and radiation. We are hoping & praying for the best. Surgery seems inevitable though. So that was why I was wondering where you were treated and how it has been going for you.

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