riverratttt47w's Journey with Carcinoid tumor, Small Intestine Cancer

Patient: Small Intestine Cancer > Carcinoid tumor

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 6 years ago, Male, Age: 60

  1. 1
    about 6 years ago
    riverratttt47w's Avatar

    Surgery

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  2. 2
    about 6 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    have a number of symptoms as well like short of breath, vomiting, diarrhea, fatigue, eating problems, sweats, pain in stomach, weight loss...etc

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  3. 3
    about 6 years ago
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    Nausea medicine

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    about 6 years ago
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    rather to have another surgery as the first one where doc went down throat didnt go so well

    Decision Point

    seems doc did an upper endo to remove the tumor and was promised it was all gone and I was fine and had now cancer and turns out he was wrong. was sent to oncology doc and I do have cancer and more lower than before and talking major surgery and not sure about this and the outcome.

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  5. 5
    almost 6 years ago
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    CT scan on my pancreas area

    Procedure or Surgery

    doc wants to get a better look at my pancreas as he mentioned he may have to take part of it out...so off this morning to take care of it...really hoping not as I have to have another EDG next week before he does surgery, says he just wants to know what he is going do when he gets inside as I guess he wants a game plan and I want he to know too before he goes in blind...I guess all the test and body scans haven't been enough, have to say this is getting expensive on the pocket having to run all the time for all these test and things and just getting started. not sure how long I can keep up with everything as I want let my bills go under to take care of me as then my baby will never be able to catch up if something were to happen to me and I cant do that to the one I love as its hard enough on her without worrying about the bills as well. going to take this so far and if gets to much I will leave it in god's hands as I did my liver in 2005 and doc said I would be dead in little over a year....hahaha, he was wrong and going to make these doc's wrong as well if I can...just another day in the life of one with cancer and feeling a little lost at times...

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    2 Comments
  6. 6
    almost 6 years ago
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    Surgery

    Procedure or Surgery

    Had an EDG done this morning to get a better look and things and some kind of ultrasound while in there to let my surgeon just what needed to be done she said. It was my first time seeing her ever but she is in same group as my GI doc but he didn't do this type procedure and that is why this other doc did. have to say she was very good at letting me know everything that was going on and why as for to know what type surgery I need. I have to say I know she is a little young but seemd very educated and pretty to look at as well....lol...know I would love to have her as mine but love my doc even though at times we have it out as well as his nurse as we did yesterday as I felt he abandoned me but I was wrong and I realize he just wants the best for me. hoping to her something soon.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  7. 7
    almost 6 years ago
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    What Type Surgery

    Decision Point

    I got a call last night from one of my GI doctor's that did the EDG Ultrasound last week as she promised (I like it when a doc tell me they will call they do and not week alter or have nurse do it) told me from biopsy it didn't seem to be as big as thought but scan does show big area of glow...(little lost here) ...So I ask you telling me no more surgery and she hesitated as she said no I will but it will be up to the surgeon and ask if he had called me yet or had appointment, told her no on both and she told me she will make sure he got this and if I didn't get a call by middle of week to call him. Said it was going to be up to him as of what type of surgery would be needed. Sounds to me like no one knows all that much except they all agree I have cancer and need surgery. What is this coming to...just open me up and then decide what to do and cut out...I aint no lab rat, I would kinda like to know just a little about what plans are before anyone does a thing. doesn't seem to be a winning side to this mess at the beginning does it....Keep On A Smilin...not sure who is gonna give out first, me my wife or our funds to keep me going as I had more blood work and nothing seems to end not even the test. I have a feeling this is going to be a longer battle than I or my wife had thought financially, we'll just have to see... BLESSINGS TO ALL

    1 Comment
  8. 8
    almost 6 years ago
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    Type of surgery

    Decision Point

    Well nurse finally called me today and ask me to be in next Wednesday to talk everything over as I guess its time to decide just what type surgery I will be having for sure at that point , at least I hope so.

    1 Comment
  9. 9
    almost 6 years ago
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    Whipple Procedure

    Decision Point

    saw surgeon yesterday, wasn't a good talk as before it was over I was so frustrated I walked out and left into the waiting room until my wife came out. says he cant promise doing this whipple surgery will even help me or not for sure. was told the my GI doc lost my tumor during the endoscopic surgery inside my intestine as well yesterday form surgeon so he has no way now of knowing for sure of some things he says but the new GI doc that done the Last scan said I would need surgery as I had a lot of glowing in the area where the first cancer was removed. not understanding why my doc would lie to my wife and I about it as he told her after surgery when her went in to talk with my wife that he got it all and ask as he was reaching down for his pocket if she wanted to see it and then says ops, I forgot I already sent it to lab when he clearly never even had it but told my wife it was about the size of a quarter or little larger. called my family doc as to send me for new surgeon at cancer center here by where I live and see if I can get a better outlook on this as no one is cutting me into a puzzle and trying to put the pieces back with no certainty that this will help me. he did draw me a couple more pics Gregp....lol...this shows what all he wants to remove and then drew me one of this wreck he was going to put back together somehow....all in all wasn't a good day as I see it.

    2 Comments
  10. 10
    almost 6 years ago
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    Other

    Oh No

    I have to say I really don't know what to think anymore, I was told I need to have a whipple surgery and I seen a surgeon but I wasn't happy with his confidence and so I ask my oncologist for a different surgeon and one with plenty of experience and sent me to doc that's been doing this type surgery for over 30yrs and nothing but good things about him. well I went to see him and set up surgery and he tells me he believes there is more going on than just the cancer and sent me for my second body scan in about 3 months last week. meanwhile I have been suffering the upmost pains and all in my stomach as well as no desire for food but I try and eat what I can as I feel so full in just a few bites and I drink ensure to help as this has been going on since my first surgery last July and just getting worse with time as well as the things I eat seem to rip me up inside and still hace trouble with bowels but its not constapition as my stools are really lose and only every 2-3 days. my GI doc told my wife there was nothing he could do as I don't understand as he is the one that removed the cancer in the first place and ripped my artery in the process leaving me messed up and having to have a team called in to go through another surgery to fix the artery and save my life as well as 2 blood transfusions...really been lost a lot lately with all this and being told that my GI doc shouldn't have done it the way he did to start with but figured he was trying to save me a bigger surgery but I haven't been right since and getting rough and I was in better health before I let them touch me. I go see oncologist tomorrow morning for post op as I was suppose to done had the surgery twice now and here I am...still messed up with no answers and lost. so me and cancer doc are going to have a long talk tomorrow and I expect some answers as well as copies of my records that they have to take with me.

    3 Comments
  11. 11
    almost 6 years ago
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    Cancer is back/Recurred

    Oh No

    well it seems I still have cancer after GI doc tells me I don't and he got it all and sent everything off to labs but I find out different as time goes by. seems my surgeon as well as my oncologist has said the GI doc should have sent me to see them first not after he did what he did and has now made things worse for me as my surgeon doesn't think the whipple will help me and thinks that there maybe more going on than just the cancer. my cancer doc also says I still have activity in the second half of my douedem and not sure if its reoccurring or new as the GI doc seems to have lost the first tumor inside me as he was trying to remove something he shouldn't have and ripped my artery as well and had to have 3 blood transfusions and a second surgery to fix the artery. as I was told I am sort of stuck between a rock and a hard place...wanted to just pass me around the past few months from one doc to another with no help and now cancer doc wanted me to go to Columbus but not going there. I have been sent for another body scan as well last week and found that I still have more as I said but I did get a call from surgeon's murse and wants me to have the gi doc go back down and scope me again to pin point the spot where he removed the last tumor but he will not be the one if its done, so looking and talking to a different GI doc and trying to get some help as well as some answers to all this XXX I have had to live for the past 8 months now. one thing I don't like is someone to lie to me and if you keep something from me that is lying in my book. had a long talk with my wife and decided I am going to take a few weeks off from all this as I need to get myself grounded again as I have gotten to the point that I cant even talk to anyone about it not even any doc's or nurse's without losing it and getting angry from all the wasted time and BS they have put me through and the lies I have been told from GI doc and now no one wants to tell me just what happened in that surgery. so I am kinda wondering if its something I just need to suck up and live with, gonna wait and see what new GI doc has to say about it and if she can shed any light on things. thought I was cancer free as from what GI doc told me but I guess I am not...so I guess I am not a cancer survivor as much as one living and still battling cancer, but I WILL survive

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