Difficulty breathing and pain

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Suez39
Suez39 Member Posts: 162 Member
in Head and Neck Cancer #1

Hi H&N members. I had a few questions and I'm hoping that someone can help me. I had base of the tongue and left tonsil cancer. Been over year since treatments finished. I have ear pain and my primary care doctor said it was an ear infection but my throat doctor said I don't have an infection. He scoped me and said I have a paralyzed vocal chord. I also have trouble breathing. Is ear pain and breathing problems a sign that the cancer came back?  I have to go in the hopital for dilation and possible biopsy. They said they might have to give me a trach if I can't breathe with oxygen tube put in me when procedure is done. I'M PETRIFIED to have a trach put in my neck for breathing. Did anyone have a trach put in? If so how long did you have it and is it hard to talk with it and get use to it? Just when you think your doing good, they hit you with more bad news. I don't have a family support, so I'm basically Alone in this. I have been fighting this battle a long time and I finally broke down today. Thought of myself as a tough pizanno but without being able to eat my meatballs I guess I'm not. Hope to hear from you soon! Hugs to you!

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  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #2
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    Bummer...

    You've been an active resident on this board and I personally prefer to see you pop up on the "advice giving" end rather than asking for it.  A quick google search suggests that paralyzed cords (1 or 2) can have many causes among which are cancers and the wonderful interventions performed to cure the cancers (surgery, radiation, etc...).  So I wouldn't think it should be terribly worrisome yet that this would be a recurrence but possibly just another gift that keeps on giving.

    Unfortunately, I don't have any relevant advice to offer...but wishing you good luck and positive thoughts.  

    Brandon

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #3
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    Suez I Have

    read of others on here through the cancer treatment they needed a temporary trach or I have heard or read that someone can have an allergic reaction and need a trach temporarily so it may be necessary or not in your case. I was in your situation where they had trouble intubating me but I was fortunate they could always get it through and I did not need a trach. It sounds like in your case you describe that if they really have to do it then it would be temporary. An OK deal to get you through this situation. 

    But let me break it down a bit as to what you wrote--so far we know for sure you have a paralyzed vocal cord as by your scope results. You say "I also have trouble breathing. Is ear pain and breathing problems a sign that the cancer came back?" The answer is an emphatic NO! It's not cancer till they say it's cancer and that is why they want you in the hospital to do a biopsy one way or the other and the biopsy will be tested and they will have verifiable proof through that biopsy that A-you have cancer or B-it is negative and you don't. From there you can confer with the docs as to why you have trouble breathing and can they tell you why you have ear pain and what are the solutions?

    Hang in there, calm down and handle one thing at a time, separate things then you are not dealing with a huge set of problems and overwhelming yourself, and trust in your medical team they will do the best they can for you and believe me if they have to give you a trach temporarily they don't take it lightly as it is something else for the patient to deal with and they try to help us cancer folks by being as less intrusive on our bodies as possible.

    Also, trust in the Lord, read your Bible and Pray a lot as others on here will surely be praying for you to get through this difficult time and another hump you certainly did not want to deal with.

    Check out this link 31 helpful Bible verses--

    https://www.joyinthehome.com/31-bible-verses-for-families-affected-by-cancer/

    Take Care-God Bless-Wishing you the Best.

     

     

  • Suez39
    Suez39 Member Posts: 162 Member
    edited July 2019 #4
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    johnsonbl said:

    Bummer...

    You've been an active resident on this board and I personally prefer to see you pop up on the "advice giving" end rather than asking for it.  A quick google search suggests that paralyzed cords (1 or 2) can have many causes among which are cancers and the wonderful interventions performed to cure the cancers (surgery, radiation, etc...).  So I wouldn't think it should be terribly worrisome yet that this would be a recurrence but possibly just another gift that keeps on giving.

    Unfortunately, I don't have any relevant advice to offer...but wishing you good luck and positive thoughts.  

    Brandon

    Checking in

    Brandon in the past I have given "advice" to members if I can help them. I'm not the type of person to just ask for help and not give nothing back in return. Feel like you judged me wrong. I have battled cancer more than once so it's natural to be afraid for recurrence. I have compassion for the members are here because I know how difficult it can be. Good luck to you. 

  • Suez39
    Suez39 Member Posts: 162 Member
    edited July 2019 #5
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    Thank you wbc -

    I will check out the link you sent me and your right I do have to separate things and tackle them one at a time. When I asked my doctor about the trach she said we will leave it in so we will be able to do "work" on you. She didn't elaborate on that so it doesn't sound temporary. Also the other nurse told me I would have to learn to breathe through my neck and how to clean it. So I started to panic. Waiting till after scan is done then will know more. Thank you Very Much for taking the time to offer your help. I appreciate it! 

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #6
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    Suez39 said:

    Checking in

    Brandon in the past I have given "advice" to members if I can help them. I'm not the type of person to just ask for help and not give nothing back in return. Feel like you judged me wrong. I have battled cancer more than once so it's natural to be afraid for recurrence. I have compassion for the members are here because I know how difficult it can be. Good luck to you. 

    You misunderstood me...lol

    I prefer it when you are on the healthy side giving out great advice!  Just like everyone else on here.  Bums me out when people start having troubles and are asking for advice.

    I hope I only ever have to "give" advice...means I'm doing well.  :-)  Same for you, hope all works out and you can get back to giving advice and not asking for it.

    Brandon

     

  • SuzJ
    SuzJ Member Posts: 427 Member
    #7
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    Ear pain

    hope this helps - I'm.. um.. wow, about 2 years out.

    I have intermittent ear pain, I've had the CT, been poked and prodded, but assured, it's the "new normal"

    I hate to think that for the rest of my life, that every twinge, every earache, food going the wrong way, not being able to swallow, is going to panic me so much, but, there we have it. We survived, and we'll survive this.

    My ENT told me, it's good to be cautious, he'd rather see me for an ear ache, than for cancer.

    Ear pain, and swelling was how I knew I had cancer. I told the Dr I had it, before diagnosis, so actual diagnosis wasn't a shock, just a confirmation. We are the best judges of how we feel, what feels wrong, what is right, and whats just ok.. Never let anyone tell you different.

    Our vision of ourselves is slightly :) skewed now, as in our minds, we are not "perfect" But we are and always will be.

  • [Deleted User]
    [Deleted User] Posts: 0 Member
    #8
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    Scar tissue

    I was searching older threads on scar tissue and came across something I thought was interesting.  A member Charles55 had posted about eight years ago regarding his struggles with breathing and had a procedure done called “micro trap door flap”.  It doesn’t seem to be a common technique, even though the articles I read about it were positive.  In his post he did credit the Dr. in Arkansas that preformed his surgery.  Scar tissue seems to be a thorn for most of us.

  • 1238249123
    1238249123 Member Posts: 2
    edited July 2019 #9
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    ear pain

    I think I would get another opinion or as for a MRI scan. My husbands only symptoms was ear pain with his stage 4 base of tongue cancer. Good luck

     

  • Suez39
    Suez39 Member Posts: 162 Member
    #10
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    Thank you everyone for your feedback. I'm going for a CT scan tomorrow morning. Then I have an appt with my ENT to discuss the results. ( Hopefully my cancer did not return.) I am very anxious to get this all over with. I was told that they can't cut or laser scar tissue in your throat. It's because of the location and would create new scar tissue forming. Ugh.. Amazing with all the side effects thrown at us we can still fight hard to prevail. Thx again for your help!

  • ERomanO
    ERomanO Member Posts: 317 Member
    #11
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    Best wishes...

    ... on a positive result from the CT scan, and please keep us posted. You are in our thoughts and prayers!

  • ProustLover
    ProustLover Member Posts: 120 Member
    #12
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    Suez39 said:

    Thank you everyone for your feedback. I'm going for a CT scan tomorrow morning. Then I have an appt with my ENT to discuss the results. ( Hopefully my cancer did not return.) I am very anxious to get this all over with. I was told that they can't cut or laser scar tissue in your throat. It's because of the location and would create new scar tissue forming. Ugh.. Amazing with all the side effects thrown at us we can still fight hard to prevail. Thx again for your help!

    Thinking of you

    Suez39 - You'e been in my thoughts all day.  You're brave and strong (with meatballs or without!) Hoping you won't be tested again.  

  • Suez39
    Suez39 Member Posts: 162 Member
    edited July 2019 #13
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    Thank you!

    I try to be a "warrior" going through this battle. Because it really makes me angry that I can't make any positive progress. We all do what our medical staff tells to do. Does it Actually Help? Seriously, I think all of us on this forum do somewhat better by helping each other with suggestions to "ease" our side effects or make them bearable. And ProustLover liked it that you remember my meatball joke. That's another thing. I use to make the best meatballs. All my friends loved them. They are even better when you mix fresh ground pork and beef. Even if I ever get to eat again ( I'm on a feeding tube) their is always that fear of the meat going in your lungs. Even if you chew it a thousand times. Sometimes when I'm out in public I actually " lick crackers chocolate etc.. Lol People look at me and laugh. I laugh with them. You guys should try it. I know it's a tease cause some of us can't eat it but it's as close as your gonna get! So wazz da matter with you - justa try it! Lol

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    edited July 2019 #14
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    Suez39 said:

    Thank you!

    I try to be a "warrior" going through this battle. Because it really makes me angry that I can't make any positive progress. We all do what our medical staff tells to do. Does it Actually Help? Seriously, I think all of us on this forum do somewhat better by helping each other with suggestions to "ease" our side effects or make them bearable. And ProustLover liked it that you remember my meatball joke. That's another thing. I use to make the best meatballs. All my friends loved them. They are even better when you mix fresh ground pork and beef. Even if I ever get to eat again ( I'm on a feeding tube) their is always that fear of the meat going in your lungs. Even if you chew it a thousand times. Sometimes when I'm out in public I actually " lick crackers chocolate etc.. Lol People look at me and laugh. I laugh with them. You guys should try it. I know it's a tease cause some of us can't eat it but it's as close as your gonna get! So wazz da matter with you - justa try it! Lol

    Sending postive thoughts and prayers your way

    HI Suez, Sending thoughts and prayers coming your way for good results. Hope you get to eat your meatballs real soon!

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