Something new that I hope will help others who follow

Bobs1wife
Bobs1wife Member Posts: 150
edited March 2012 in Esophageal Cancer #1
It has been 3 weeks since Bob passed and I am still trying to realize he is truly gone. He touched so many lives in such a quiet way and we never knew it was even happening. He was a very humble man. Some of his words as he went to his last surgery, that we were never to be able to talk with him again, were that he wanted "something good to come of this". And he meant it. He always gave HUGE HUGS, and he wanted us to show LOVE TO EACH OTHER EVEN MORE, so please, for Bob, give more hugs, more love to those who are dear to you, because as he said, it might be the last time you ever see them. We miss him and his big hugs.

I also feel that possibly someone may able to be helped by what he went through. This is not meant to scare anyone, but just from what happened with him I hope it will somehow be able to help, or save, someone, sometime, with just a little bit of knowledge that I have never seen posted, and never knew about before this happened to him.

Dilation is a common thing as the throat heals. Bob had a clean scan in August of 2011. Sometime after that he was needing to have more stretches as his throat would not stay open. He was diagnosed with a recurrent cancer at the anostamosis site December 2011. This tumor was 1" x 3/4" and had gone undetected because it was growing on the outside of the esophagus which is where a recurrence often happens. Although he had a scope and stretch many times between August and December 2011 the tumor could not be seen with a scope because it was on the OUTSIDE. Since a scope was being done anyway, knowing what I know now, I would have demanded an EGD-scope with ultrasound, which would have detected the tumor and given him a chance to have it removed before it invaded the aorta and trachea. EGD isn't standard treatment, but why isn't it, when someone is requiring such frequent stretches? There are just so many sneaky things with this cancer, just one more thing we never knew about and that will hopefully help someone, someday, by telling what happened to my wonderful husband. Linda

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Bobs1wife
    Bobs1wife Member Posts: 150
    #3
    unknown said:

    This comment has been removed by the Moderator

    Thank you, William
    Thank you, William for the kind words. Yes, we were reassured well before the recurrence that Bob had done everything that could be done to fight this. And we placed ourselves in God's loving hands from the beginning. We rejoice that he is pain free, whole again, and with the Lord he loved so much, but for us left, there is, of course, the void of his beautiful life in ours.

    My though was just that if it would help someone, it would be beneficial to post. I don't think I quite phrased things right. Primary tumors of the esophagus are usually found on the inside of the esophagus. Recurrent tumors often grow on the outside and cannot be seem by a scope. So, if someone is requiring stretches very frequently, that don't seem to be helping, then it would be a good thing to have the EGD which would show thickening, or tumor, instead of to just keep stretching a malignant tumor, which is essentially what was being done. Not every stretch would need and EGD, but in the case of a stubborn tissue that will not stay stretched, check it out. Surely not routine, but in some instances I still feel it would be warranted. Every bit of knowledge that can be gained is good.

    Our understanding with PET, or CT, was that our insurance BCBS would only pay for one PET scan per year. They will pay for CT's. All of our doctors said CT was fine for after the surgery for detection of anything. I'm not sure of Medicare's policies as we weren't on that yet. Linda
  • JReed
    JReed Member Posts: 428
    #4
    Bobs1wife said:

    Thank you, William
    Thank you, William for the kind words. Yes, we were reassured well before the recurrence that Bob had done everything that could be done to fight this. And we placed ourselves in God's loving hands from the beginning. We rejoice that he is pain free, whole again, and with the Lord he loved so much, but for us left, there is, of course, the void of his beautiful life in ours.

    My though was just that if it would help someone, it would be beneficial to post. I don't think I quite phrased things right. Primary tumors of the esophagus are usually found on the inside of the esophagus. Recurrent tumors often grow on the outside and cannot be seem by a scope. So, if someone is requiring stretches very frequently, that don't seem to be helping, then it would be a good thing to have the EGD which would show thickening, or tumor, instead of to just keep stretching a malignant tumor, which is essentially what was being done. Not every stretch would need and EGD, but in the case of a stubborn tissue that will not stay stretched, check it out. Surely not routine, but in some instances I still feel it would be warranted. Every bit of knowledge that can be gained is good.

    Our understanding with PET, or CT, was that our insurance BCBS would only pay for one PET scan per year. They will pay for CT's. All of our doctors said CT was fine for after the surgery for detection of anything. I'm not sure of Medicare's policies as we weren't on that yet. Linda

    I will sure keep this in mind
    Every bit of information that you can think of to post is A-OK with me. Actually from posts like yours, my education on this stupid cancer is expanding and I hope I am able to retain some of this information. May never need it - but at least it will be in the back of my head to recall should the need arise. I did not know that recurrence usually happens outside the esophagus either - so thanks for that info. You pioneers are so amazing - I don't know what we would do without you!

    Thank you so much Linda - we think of you often and thanks for staying on the board with us.

    Love and hugs,
    Judy
  • Ginny_B
    Ginny_B Member Posts: 532
    #5
    My mom had and EGD and it
    My mom had and EGD and it confirmed the spread to the nodes and to the back area. We were told after the EGD that it was the beginning of the end. It was hard to accept. I sorta kinda didn't accept it. I expected to have mom around long for some quiet talks and sitting in the backyard in the sun. That never happened.

    Funeral is Thursday. I want to go to Mars and disappear.
  • Freida
    Freida Member Posts: 182
    #6
    Bobs1wife said:

    Thank you, William
    Thank you, William for the kind words. Yes, we were reassured well before the recurrence that Bob had done everything that could be done to fight this. And we placed ourselves in God's loving hands from the beginning. We rejoice that he is pain free, whole again, and with the Lord he loved so much, but for us left, there is, of course, the void of his beautiful life in ours.

    My though was just that if it would help someone, it would be beneficial to post. I don't think I quite phrased things right. Primary tumors of the esophagus are usually found on the inside of the esophagus. Recurrent tumors often grow on the outside and cannot be seem by a scope. So, if someone is requiring stretches very frequently, that don't seem to be helping, then it would be a good thing to have the EGD which would show thickening, or tumor, instead of to just keep stretching a malignant tumor, which is essentially what was being done. Not every stretch would need and EGD, but in the case of a stubborn tissue that will not stay stretched, check it out. Surely not routine, but in some instances I still feel it would be warranted. Every bit of knowledge that can be gained is good.

    Our understanding with PET, or CT, was that our insurance BCBS would only pay for one PET scan per year. They will pay for CT's. All of our doctors said CT was fine for after the surgery for detection of anything. I'm not sure of Medicare's policies as we weren't on that yet. Linda

    Linda
    Thank you for thinking
    Linda
    Thank you for thinking of others and coming here with that piece of information at a time when you are hurting. it sounds like you are as thoughtful and kind and big huggy as your Bob was.
    Hugs
    Freida
  • Freida
    Freida Member Posts: 182
    #7
    Ginny_B said:

    My mom had and EGD and it
    My mom had and EGD and it confirmed the spread to the nodes and to the back area. We were told after the EGD that it was the beginning of the end. It was hard to accept. I sorta kinda didn't accept it. I expected to have mom around long for some quiet talks and sitting in the backyard in the sun. That never happened.

    Funeral is Thursday. I want to go to Mars and disappear.

    Oh Ginny, I am so sorry for
    Oh Ginny, I am so sorry for your pain and grief. I wish I could think of some words that would bring you comfort, but I doubt there are any right now. Wish I could give you a big hug, but all I can do is send cyber hugs your way.
    {{hugs}}
    Freida
  • Guigna
    Guigna Member Posts: 63
    #8
    cancer on the outside
    it looks like this is what my husband has too. :-( Doctor said "this is the first time I've seen this in one of my patients. I've done over 300 now. " he went on to talk about clean margins, so I am guessing he was assuming that his colleagues who DID have patients with this had done something wrong. Nope, it's just a killer cancer.
    Our surgeon said it is inoperable, and since it's growing DURING chemo, the stent he just put in is palliative. There might be radiation in his future.

    Also, my husband had a petscan in February that showed absolutely NOTHING in that area and by last week, his throat was almost closed!
    This stuff grows fast and doesn't care. So even if your husband had had more investigation, there probably wasn't too much more that could have been done.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
    Ginny_B said:

    My mom had and EGD and it
    My mom had and EGD and it confirmed the spread to the nodes and to the back area. We were told after the EGD that it was the beginning of the end. It was hard to accept. I sorta kinda didn't accept it. I expected to have mom around long for some quiet talks and sitting in the backyard in the sun. That never happened.

    Funeral is Thursday. I want to go to Mars and disappear.

    Thinking of You and Sending Hugs
    Hi Ginny
    May God be with you on Thursday. May he grant you the peace and strength you will need in the upcoming days, months, years. We just hit our 2 year mark for my dad on March 9th. We are now celebrating his anniversary in Heaven. Time does heal. Time does make it more acceptable. I often have to remind myself my dad had no quality of life left. He was in constant pain. Who wants a parent to have to suffer like that? We are in this together. Lean on us whenever you need to. We will be with you in spirit at the funeral, and mom will be watching from up above!
    Tina in Va
  • Cora11
    Cora11 Member Posts: 173
    #10
    Guigna said:

    cancer on the outside
    it looks like this is what my husband has too. :-( Doctor said "this is the first time I've seen this in one of my patients. I've done over 300 now. " he went on to talk about clean margins, so I am guessing he was assuming that his colleagues who DID have patients with this had done something wrong. Nope, it's just a killer cancer.
    Our surgeon said it is inoperable, and since it's growing DURING chemo, the stent he just put in is palliative. There might be radiation in his future.

    Also, my husband had a petscan in February that showed absolutely NOTHING in that area and by last week, his throat was almost closed!
    This stuff grows fast and doesn't care. So even if your husband had had more investigation, there probably wasn't too much more that could have been done.

    Tests, Loss ....
    To Linda-
    As always.. so so sorry for your loss and grief. The loss is immense and I so thank-you for sharing your thoughts during your own time of sadness. I think that there is healing that happens when we give to others during our own time of loss. You are generous and courageous.

    As for the tests... it's humbling to learn over the years that even with all the fancy machines, medicine is still a blend of art and science and listening and communication. As a nurse and doctor team here- it is truly humbling.

    And I'll probably muddy the waters here, but what my husband Keith is choosing to do for follow-up is CT scans with contrast. The information that he cites ( sorry to contradict a bit here, but hey... we're all here to learn) is that PET scans cannot pick up anything smaller than 5mm and that a full body PET/ CT actually has less resolution than a contrasted CT so you actually get better results with a contrasted CT and then less overall radiation exposure. So I just thought I might throw this info into the mix as another viewpoint on decision making. It's just hard at times to know what path to choose for surveillance.

    Again, thanks for your input Linda and sorry I've been away from this site for awhile. I read it all the time, but haven't had much time to write much these days trying to keep our lives moving forward. I'm always amazed at the depth of info here and support.

    Keith is progressing well- not without challenges and it might just be that he may need a dilation- so again, the advice here is invaluable. And Ginny... sending you love and light and peace ...

    Cora

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