First scan results

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jackflash22
jackflash22 Member Posts: 524 Member

had my monthly check up this morning my MRI scan( first one since rads) was clear and so was my scope this morning. He said my throat looked better than last time. He talked about my throat blockage and said I could have a double endoscopy going through my PEG tube upwards that would be one team, he would be going down the 'feed' tube through my throat, a, bit like the channel tunnel they have to meet the same place. Just a little dilation would be possible at first followed by more endoscopieses. The 'but' was it would be at a risk and only I can decide that. The risk is as my throat is rad damaged it's lost it's elasticity and they could split the feed tube then it would be a hospital stay and surgery to repair it, even then they're not sure how I'd feel, I feel normal now and getting on with my life I don't want to go backwards. I feel if I say I don't want the op then I can't ever eat or drink without aPEG tube again. Whereas if I have the op it may be successful first time. I'm terrible at making decisions I thought they would go ahead and do it making the decision for me. I need second opinions from anyone whose had it done whether or not it was  successful or unsuccessful. 

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  • Guzzle
    Guzzle Member Posts: 710
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    Chuffed!

    Jackie, firstly made up for you on scan results. With regard to the surgery my observation is that you are informed of every slight risk at the outset no matter how small. Could you ask the Doc for better quality info about probability and chance of it going wrong? All the best, Gary

  • Goyca
    Goyca Member Posts: 220
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    Jackie I'm,sorry I can't give

    Jackie I'm,sorry I can't give u any help or advice cz I dunno much about this! First its good that the scans are clear. And I hope u take the right decision. As Gary said, try to get more info from the doc.

    good luck dear. Xoxo, goyca.

  • KB56
    KB56 Member Posts: 318 Member
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    endoscopy

    I was having a little trouble swallowing and was getting choked from time to time.   My wife is a nurse at an endoscopy place so she insisted I get the procedure done (going down the throat to see if it needed to be stretched).   I must admit I'm not familiiar with exactly what you are talking about but agree with Gary that they always have to tell you, and have you sign the worst case scenerio.    As far as the endoscopy and stretching the esophagus, that is a very routine procedure and nothing to worry about and I just had it done a few weeks ago so very fresh in my mind.    I don't even remember them doing it and the prep was nothing (just can't eat or drink so better to schedule it earlier in the day).

    They initially thought my throat might have been constricted due to the radiation (pretty common side effect it seems) but it turned out mine was fine and all they found was some inflammation in the stomach, probably due to Alieve, so I started taking something that will help the inflamation (and stopped taking Alieve).   I just need to chew, chew, chew, sip water, chew, chew, sip water, chew and swallow a little more than i was:)

    I know the decisions are tough and unfortunatly you've had to make too many lately, but get a doctor you trust who specializes in those who have had radiation, and I would think you would be fine.   Getting rid of the PEG is a big step (I had one as well and it felt so good to get that sucker out) and I know would be a positive step forward for you if you can get by, and thrive, without it.   Unfortunately none of the decisions we seem to make are easy these days and they all have their upsides and potential downsides/risks.    I know I would personally do it.

    Good luck.

    Keith

  • jackflash22
    jackflash22 Member Posts: 524 Member
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    KB56 said:

    endoscopy

    I was having a little trouble swallowing and was getting choked from time to time.   My wife is a nurse at an endoscopy place so she insisted I get the procedure done (going down the throat to see if it needed to be stretched).   I must admit I'm not familiiar with exactly what you are talking about but agree with Gary that they always have to tell you, and have you sign the worst case scenerio.    As far as the endoscopy and stretching the esophagus, that is a very routine procedure and nothing to worry about and I just had it done a few weeks ago so very fresh in my mind.    I don't even remember them doing it and the prep was nothing (just can't eat or drink so better to schedule it earlier in the day).

    They initially thought my throat might have been constricted due to the radiation (pretty common side effect it seems) but it turned out mine was fine and all they found was some inflammation in the stomach, probably due to Alieve, so I started taking something that will help the inflamation (and stopped taking Alieve).   I just need to chew, chew, chew, sip water, chew, chew, sip water, chew and swallow a little more than i was:)

    I know the decisions are tough and unfortunatly you've had to make too many lately, but get a doctor you trust who specializes in those who have had radiation, and I would think you would be fine.   Getting rid of the PEG is a big step (I had one as well and it felt so good to get that sucker out) and I know would be a positive step forward for you if you can get by, and thrive, without it.   Unfortunately none of the decisions we seem to make are easy these days and they all have their upsides and potential downsides/risks.    I know I would personally do it.

    Good luck.

    Keith

    T hank you for your reply. I

    T hank you for your reply. I have had two endoscopieses but my feed pipe is completely blocked solid and they couldn't get the scope down. 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    T hank you for your reply. I

    T hank you for your reply. I have had two endoscopieses but my feed pipe is completely blocked solid and they couldn't get the scope down. 

    jf, i can't really advise you

    jf, i can't really advise you but wanted to say I'm praying for God to help you make the decision you are most comfortable with.  we will be here for you and understand whatever you decide.  i'll keep you in my thots and prayers.  good luck.  congrats on the clean scan!!  for that, i'm doing the happy dance!!

    God bless,

    dj

  • patricke
    patricke Member Posts: 570
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    BIG DECISION

    Hey Jackie,

    Congratulations on the clear MRI and scope!  I'm so sorry however, that you are in this consticted throat situation.  Where is the constriction, at the entrance or deeper (it sounds like it is pretty deep)?  I would deffinitely ask my doc how many of these procedures has he done.  My esophagus was closed at the entrance for a lot of years thanks to radiation too, but it was rebuilt in 2011 when I had my laryngectomy (another rad gift), so I'm swallowing again.  There are no easy choices/answers for these situations.  If your are located anywhere near NYC, you  might want to consider contacting Mark Urken, M.D. (check him out on the web, he's amazing) for a second opinion.  Best wishes for the best outcome possible.

    PATRICK

        

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    scans all clear, great!

    Jackflash22,

    This is an easy one, I would *** *****  ** **** and I think it is a good choice.

    Best always,

    Matt

  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Jackie

    Great news on the scan and throat. As far as the dilation you will have to make that decision, I know some here with the same C as we had and have done very well with dilation. As for me I never did do a dilation being I had the radiation treatment twice to the same area and it most likely would not heal if something did go wrong. But you had it only once so you should be OK if that is what you want to do.

    Whatever you do my thoughts and prayers will be with you

    Tim Hondo

  • jackflash22
    jackflash22 Member Posts: 524 Member
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    patricke said:

    BIG DECISION

    Hey Jackie,

    Congratulations on the clear MRI and scope!  I'm so sorry however, that you are in this consticted throat situation.  Where is the constriction, at the entrance or deeper (it sounds like it is pretty deep)?  I would deffinitely ask my doc how many of these procedures has he done.  My esophagus was closed at the entrance for a lot of years thanks to radiation too, but it was rebuilt in 2011 when I had my laryngectomy (another rad gift), so I'm swallowing again.  There are no easy choices/answers for these situations.  If your are located anywhere near NYC, you  might want to consider contacting Mark Urken, M.D. (check him out on the web, he's amazing) for a second opinion.  Best wishes for the best outcome possible.

    PATRICK

        

    Blockage

    thank Patricke, my blockage is  just behind my 'Adams apple" ( don't know if women get an adams apple but that where it is if I had one) I'm English and live in Oxfordshire my hospital has state of the arts cancer unit, it's a teaching hospital. The team of doctors I have are specialists in H&N cancers. I would like to go ahead with the endoscopy but then I think if something goes wrong I'll be kicking myself for not staying where I am now. I try not to dwell on food and ignore people eating around me. I do get a craving occassionly for fruit or salad or in this heat we are having a cold beer. I.ve never crave meat or fish and I never feel hungry. I was putting on weight with 5 ensure+ a day so the dietician has put me on 5 one day 4 the next.  My surgeon is going to speak the the other team that would go through my stomach and up through the esophagus. My surgeon would go down through the mouth and hopefully they would meet. This depends if there's a small hole in the bottom side of the blockage for them to get through. There's no hole in the top. He also said I have lost the elasticity due to rads, so could split. I wish they hadn't told me all this and just gone ahead with it. I feel great at present, like I did before the op and rads, I didn't think I'd ever get to this stage again 

  • patricke
    patricke Member Posts: 570
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    JUST WONDERING

    Jackie,

    So, NYC is out of the question, and you are in more than great medical hands.  I was just wondering have you chatted with your docs about what they would do surgically if they did the dialation, and there was the occurrence of a split, e.g., would they replace or patch that section of your esophagus with a piece of tissue that you would donate from elsewhere on your body?      

    PATRICK

  • jackflash22
    jackflash22 Member Posts: 524 Member
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    patricke said:

    JUST WONDERING

    Jackie,

    So, NYC is out of the question, and you are in more than great medical hands.  I was just wondering have you chatted with your docs about what they would do surgically if they did the dialation, and there was the occurrence of a split, e.g., would they replace or patch that section of your esophagus with a piece of tissue that you would donate from elsewhere on your body?      

    PATRICK

    Patricke I will ask next time

    Patricke I will ask next time I see him. I never remember to ask the important questions, I'm dwelling on what he's saying to me and when I get home I think "I should have asked him......". He's arranging a meeting with the other surgeon to talk about my case so I should know more next monthly check up if not before. I have an appt with the surgeon who did my 'flap' for my back of tongue cancer later this morning, because I wouldnt have my teeth removed I bite on some scarring to one side of my mouth, he's talking about refining it and putting a skin graph from my arm over it. I seem to be unlucky with scarring,...from rads...and surgery, the surgeon said some people are prone to scar I must be one of them. Thanks for you're concern I appreciate it...Jackie