bad news regarding my dad

emg09
emg09 Member Posts: 228
edited March 2014 in Esophageal Cancer #1
I'm so shocked. As most know, my parents and I live in Maryland and I have my dad in a clinical study at the Hillman Center in Pittsburgh. So, my parents have travelled up there without me. I've had concerns regarding my dad's health, he has been so sick, not eating and hardly getting out of bed. The tumor is shrinking, but to us, it's very slow. Of course we are Drs. but it seems that it should be faster so I send a note to the Dr. about him being so sick and dropping so much weight. I also wanted to know his staging, as I was expecting something different. While he was being treated at Georgetown in DC we were told T3N1M0, the Dr. sent this to me. What is his current stage? T4N1M1b. This is heart wrenching news. I told me mother and it was just devasting to her. Now she's questioning why we should continue to put him through this. I told her not to give up hope. I do think we are going to have him moved back down here and go to Johns Hopkins so that I can be more involved. I really hate to do this, but I think that's what we need to do. This is just the most depressing news to receive. I was really hoping a new staging of T2 or something like that. Please say extra prayers for him. I don't think we should tell him about this. I think it will be to hard for him to hear. I'm just not sure how to proceed at this point. I'm not really in a panic mode, but I feel so alone and lost if that makes any sense. Anyway, Please say an extra prayer for him.

Thanks
Erika

Comments

  • mumphy
    mumphy Member Posts: 440
    #2
    Not good!!!
    Hi Erika,
    You know my prayers are on the way!!!! You are not alone I'm here!!!! Your right I don't think you should say anything to your dad yet. Maybe when he gets stronger. E-mail me anytime you need to.

    EXTRA HUSG & LOAD OF PRAYERS ON THE WAY
    KATH
  • kitten0385
    kitten0385 Member Posts: 248
    #3
    Erika
    My thoughts and prayers are with you and your family at this time. As a patient myself, as hard as it is....he needs to know what is happening to him. I know it will be hard on you and your mom to give him this news, but he does deserve to know. Of course this is just my opinion as a patient. I wish you the best!

    Cathy
  • Unknown
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  • emg09
    emg09 Member Posts: 228
    #7
    unknown said:

    This comment has been removed by the Moderator

    Thanks everyone!!!
    I didn't log onto the site again until today. I just needed a break to try to clear my mind. Thanks Loretta and Bill, no I'm not mad at all. I'm a direct kind of person and want to know and understand things. I don't need things sugar coated at all. My dad did have 4 cycles of Oxiaplatin and 5FU at Georgetown. No, I don't think they are equipped to deal with EC at all. I think they are a good hospital for other cancers, just not ours. I do believe that he was always a T4N1M1b and was underdiagnosed until Dr. Luketich attempted the surgery, but we were never given his new staging at that time. At the time of surgery they found suspicious spots near the liver and lungs, all of which turned out negative at the time of biopsy. I think I've also gotten my mom to understand that my dad has been that all along and that we were told the wrong thing. I haven't given up hope yet at all. Thanks Sherri for you kind words of hope also. You are so right, we need to keep up hope and prayer!!! Anyway, as for Johns Hopkins, they are a great hospital and they do have an oncologist that is working with EC. I only wish we had taken him there 1st for his chemo, but who knew at the time!!! We went with what his GI Dr. recommended. No, we are not done with Dr. Luketich. Should my father become ready for surgery we want Dr. Luketich to perform the surgery. If we are going to continue with standard chemo, then I see no reason to stay in PA. for that. Baltimore is closer to home and I can be more hands on and he can come home and rest in his own house. But, we will wait for all decisions after my dad goes back to PA next week. He's going to take his week off to regain his strength and eat. He's doing much better and has eaten very well. The diarrhea has slowed down as well. So, we are on a wait and see until next week. Please keep prayers coming his way.

    HUGS!!
    Erika
  • Donna70
    Donna70 Member Posts: 852 Member
    #8
    emg09 said:

    Thanks everyone!!!
    I didn't log onto the site again until today. I just needed a break to try to clear my mind. Thanks Loretta and Bill, no I'm not mad at all. I'm a direct kind of person and want to know and understand things. I don't need things sugar coated at all. My dad did have 4 cycles of Oxiaplatin and 5FU at Georgetown. No, I don't think they are equipped to deal with EC at all. I think they are a good hospital for other cancers, just not ours. I do believe that he was always a T4N1M1b and was underdiagnosed until Dr. Luketich attempted the surgery, but we were never given his new staging at that time. At the time of surgery they found suspicious spots near the liver and lungs, all of which turned out negative at the time of biopsy. I think I've also gotten my mom to understand that my dad has been that all along and that we were told the wrong thing. I haven't given up hope yet at all. Thanks Sherri for you kind words of hope also. You are so right, we need to keep up hope and prayer!!! Anyway, as for Johns Hopkins, they are a great hospital and they do have an oncologist that is working with EC. I only wish we had taken him there 1st for his chemo, but who knew at the time!!! We went with what his GI Dr. recommended. No, we are not done with Dr. Luketich. Should my father become ready for surgery we want Dr. Luketich to perform the surgery. If we are going to continue with standard chemo, then I see no reason to stay in PA. for that. Baltimore is closer to home and I can be more hands on and he can come home and rest in his own house. But, we will wait for all decisions after my dad goes back to PA next week. He's going to take his week off to regain his strength and eat. He's doing much better and has eaten very well. The diarrhea has slowed down as well. So, we are on a wait and see until next week. Please keep prayers coming his way.

    HUGS!!
    Erika

    your Dad
    Hi Erika,
    I am in Baltimore and going to St. Josephs. I was told to go to U of Md but have ties with St. Joseph so I am comfortable there but Johns Hopkins is listed in the top 3 hospitals for esophageal cancer so think your Dad will be treated good there. My dx is T3N1M0 but I keep feeling it is actually not accurate. The positive lymph node is on the other side of my esophagus from the tumor and they only biopsied that one. Before I go thru surgery I am making the dr try their best to give me a real staging. My Pet/Cat scan did not respond to the glucose and my esophagus did not light up or the positive lymph node. Don't think I will ever be able to believe a PET scan again in my case. I pray for your Dad and hope the best for him. You can never give up hope, you need it to continue on. take care,
    Donna70
  • Threesenough
    Threesenough Member Posts: 3
    #9
    Donna70 said:

    your Dad
    Hi Erika,
    I am in Baltimore and going to St. Josephs. I was told to go to U of Md but have ties with St. Joseph so I am comfortable there but Johns Hopkins is listed in the top 3 hospitals for esophageal cancer so think your Dad will be treated good there. My dx is T3N1M0 but I keep feeling it is actually not accurate. The positive lymph node is on the other side of my esophagus from the tumor and they only biopsied that one. Before I go thru surgery I am making the dr try their best to give me a real staging. My Pet/Cat scan did not respond to the glucose and my esophagus did not light up or the positive lymph node. Don't think I will ever be able to believe a PET scan again in my case. I pray for your Dad and hope the best for him. You can never give up hope, you need it to continue on. take care,
    Donna70

    Hello Donna70,
    I am new here
    Hello Donna70,

    I am new here and was reading through these posts. You say Johns Hopkins is listed in the top 3 hospitals for esophageal cancer. Can you tell me the top 2? Where did you find this information? My husband is stage IV with mets to the liver. He's on palliative treatment. Radiation worked on the tumor and chemo is working on the liver. Quality of life sucks. He was hospitalized for 13 weeks. Finally home and requires round the clock narcotic and nausea meds. If he waits too long, he' vomiting. He's on continuous feeds and is taking nothing by mouth. He has a stent to keep a radiation induced stricture open.
    Thank you for any answers you can give me.
  • LuvmyDad8
    LuvmyDad8 Member Posts: 8
    #10
    Hi Erika,
    My name is
    Hi Erika,
    My name is Christina. I am new to the site and was in tears when I saw your post. See my Father was diagnosed with gastric esophgeal(sp) on April 7, 2009. It was a great shock. My Father and never been sick before, other than the common cold or flu. I live in NY and my Parents are in California. I got on a plane a week later to fly home with my 3 boys. We were supposed to only be there for a week but 2 days before I was supposed to fly home, the doctors told use we only had about a week left. My Dad passed away on May 1st. We were too late. Enjoy every minute. You and your family are in my thoughts and prayers. I hope the treatment continues to work.
  • K_ann1015
    K_ann1015 Member Posts: 500
    #11
    Donna70 said:

    your Dad
    Hi Erika,
    I am in Baltimore and going to St. Josephs. I was told to go to U of Md but have ties with St. Joseph so I am comfortable there but Johns Hopkins is listed in the top 3 hospitals for esophageal cancer so think your Dad will be treated good there. My dx is T3N1M0 but I keep feeling it is actually not accurate. The positive lymph node is on the other side of my esophagus from the tumor and they only biopsied that one. Before I go thru surgery I am making the dr try their best to give me a real staging. My Pet/Cat scan did not respond to the glucose and my esophagus did not light up or the positive lymph node. Don't think I will ever be able to believe a PET scan again in my case. I pray for your Dad and hope the best for him. You can never give up hope, you need it to continue on. take care,
    Donna70

    staging and lymph nodes that don't show on PET
    Hi Donna--- saw this post and wonder if anyone else has these "areas" that Dr's think are "suspicious" but they aren't showing up on PET (and maybe aren't/can't) be biopsied.... My dad is in that situation---with a lymph node near the liver. This changes the STAGING significantly (3 to a 4)--obviously we still PRAY for the best---BUT know physicians tend to treat patients differently (even if they don't MEAN to)---according to stage---
    just wondering if any you you great people on this web site have been in this situation or have input....
    you are so right----keep up the HOPE--God has a plan for all of us. But I have trouble letting go of --I guess the control of what is going to happen sometimes. I do not want mey dad to "go home yet"but I do know somehow it will all turn out OK

    Kim
    :(
  • emg09
    emg09 Member Posts: 228
    #12
    LuvmyDad8 said:

    Hi Erika,
    My name is
    Hi Erika,
    My name is Christina. I am new to the site and was in tears when I saw your post. See my Father was diagnosed with gastric esophgeal(sp) on April 7, 2009. It was a great shock. My Father and never been sick before, other than the common cold or flu. I live in NY and my Parents are in California. I got on a plane a week later to fly home with my 3 boys. We were supposed to only be there for a week but 2 days before I was supposed to fly home, the doctors told use we only had about a week left. My Dad passed away on May 1st. We were too late. Enjoy every minute. You and your family are in my thoughts and prayers. I hope the treatment continues to work.

    Hi,
    I'm so sorry to hear
    Hi,

    I'm so sorry to hear your news!!! This ugly cancer really took your dad quick. Dec. will be a year that he's been fighting. I pray every day for some good news for him. Tomorrow he goes back in for more chemo and then off for 21 days, I believe. I'm not completly sure of that just yet. I will need to wait until I talk to my mother again. It's all so over whelming and so sad to watch him go through all of this. There has been some encouraging news from other stage 4's on this site. I can only pray my dad will have good news as well. Take care of yourself and always remember the good times you had with your dad.

    Erika
  • Donna70
    Donna70 Member Posts: 852 Member
    #13
    K_ann1015 said:

    staging and lymph nodes that don't show on PET
    Hi Donna--- saw this post and wonder if anyone else has these "areas" that Dr's think are "suspicious" but they aren't showing up on PET (and maybe aren't/can't) be biopsied.... My dad is in that situation---with a lymph node near the liver. This changes the STAGING significantly (3 to a 4)--obviously we still PRAY for the best---BUT know physicians tend to treat patients differently (even if they don't MEAN to)---according to stage---
    just wondering if any you you great people on this web site have been in this situation or have input....
    you are so right----keep up the HOPE--God has a plan for all of us. But I have trouble letting go of --I guess the control of what is going to happen sometimes. I do not want mey dad to "go home yet"but I do know somehow it will all turn out OK

    Kim
    :(

    staging etc
    Hi Kim,
    What made me go from in situ to Stage III was an EUS which is an EGD that is also an ultrasound at that point the dr found the 4 cm lesion but they had thought because nothing lit up it was under 1 cm and then he found the positive lymph node. Before surgery I am talking to the dr and having him promise me he will make sure no other organs are involved before they take my esophagus. Don't give up because of Stage 4 many people are treated with chemo and radiation at Stage 4 and then the drs see if the tumor has shrunk etc and decide to operate if possible. Check out other posts. Erika sorry to do this on your post but wanted to get the info to Kim. Stay strong and stay with hope, it gets you thru.
    Donna70
  • Donna70
    Donna70 Member Posts: 852 Member
    #14
    emg09 said:

    Hi,
    I'm so sorry to hear
    Hi,

    I'm so sorry to hear your news!!! This ugly cancer really took your dad quick. Dec. will be a year that he's been fighting. I pray every day for some good news for him. Tomorrow he goes back in for more chemo and then off for 21 days, I believe. I'm not completly sure of that just yet. I will need to wait until I talk to my mother again. It's all so over whelming and so sad to watch him go through all of this. There has been some encouraging news from other stage 4's on this site. I can only pray my dad will have good news as well. Take care of yourself and always remember the good times you had with your dad.

    Erika

    Erika
    Hi Erika,
    I hope your Dad can take the chemo and get good results. Let us know what your Mom tells you. It is sure hard to watch a loved one go thru this. I often say now I am glad it is me and not my husband because I don't know how I would be dealing with it. Prayers and hugs are coming your way. take care,
    Donna70
  • emg09
    emg09 Member Posts: 228
    #15
    K_ann1015 said:

    staging and lymph nodes that don't show on PET
    Hi Donna--- saw this post and wonder if anyone else has these "areas" that Dr's think are "suspicious" but they aren't showing up on PET (and maybe aren't/can't) be biopsied.... My dad is in that situation---with a lymph node near the liver. This changes the STAGING significantly (3 to a 4)--obviously we still PRAY for the best---BUT know physicians tend to treat patients differently (even if they don't MEAN to)---according to stage---
    just wondering if any you you great people on this web site have been in this situation or have input....
    you are so right----keep up the HOPE--God has a plan for all of us. But I have trouble letting go of --I guess the control of what is going to happen sometimes. I do not want mey dad to "go home yet"but I do know somehow it will all turn out OK

    Kim
    :(

    One thing that did happen
    One thing that did happen with my dad... They attempted to do the MIE surgery, but when the Dr. got in, they found suspicious spots on the liver. They were biopsied and turned out to be negative. However, now they are rethinking this. They are now thinking the liver could be involved, I'm not understanding how they go from suspicious, to a negative biopsy, to now possibly being involved. We do know that the suspicious spots have grown, this is from a CT scan in July. So, we are anxiously awaiting the new CT scan, which won't be done until he complete's his 6th cycle tomorrow. Not sure how long the Dr. will want to wait before another scan. So, it's pin and needles for us waiting. I know God does have a plan for all of us and everything will happen in his time. The waiting is HARD!! I pray for patience and guidance daily.

    Erika
  • emg09
    emg09 Member Posts: 228
    #16
    Donna70 said:

    Erika
    Hi Erika,
    I hope your Dad can take the chemo and get good results. Let us know what your Mom tells you. It is sure hard to watch a loved one go thru this. I often say now I am glad it is me and not my husband because I don't know how I would be dealing with it. Prayers and hugs are coming your way. take care,
    Donna70

    Thanks!!
    I really don't know how my mom does it. I couldn't imagine having to watch him on a daily basis. When I see him I just want to cry, but he does continue to want to fight. Thanks for the prayers and hugs and I'm sending some your way too!! You sound so strong and please do keep your faith!! I know it's scary and a hard road to travel!!

    Prayers for you!!
    Erika

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