new from England, 2yrs post op and having problem

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ncle54
ncle54 Member Posts: 3
in Head and Neck Cancer #1

Hi new here from England, two years post op( Oct 13) for stage 3 SCC left tongue,partial glossectomy, reconst from leg, neck dissection, 35 rads and have peg fitted. Have got through many effects and always exercise for tight neck. Really thought i was "on my way". For the past four months have had a feeling of pressure on my wind pipe(a bit like being strangled)and that I can't breathe properly. Told Onc when it first started and he said effects of radio can last a long time and that was that. Saw my Doc who tested thyroid which came  back normal, she did'nt want to do xray as i'd had one in Feb for a chest infection I had.This seems to be getting a little worse every day and I'm starting to struggle with it. Don't see anyone till end of Nov  and don't know what to do. So sorry for moaning but any help or advice would really be appreciated. I have to say so wish I had found this site at the beginning of my treatment, there are some amazing people here.

A

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  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
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    Throat

    See an ENT so they can scope you.  My husband had the same trouble.  After radiation and chemo and then being told he was NED, he started having trouble with breathing.  Saw the radiologist and she sent him immediately to the ENT who scoped him and said he need another biopsy and a trach because one half of his voice box was paralyzed.  He was then referred to a head and neck specialist who said the cancer was still there and that he needed surgery.

    Wishing you the best

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    I wouldn't try and wait till

    the end of November....if you're breathing is being affected, then you need to see someone ASAP.  You might just need something simple to fix what's going on....but breathing pretty important.   It could easily be caused by the radiation treatments....as they say it's "the gift that keeps on giving"....

    p

  • ncle54
    ncle54 Member Posts: 3
    #4
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    phrannie51 said:

    I wouldn't try and wait till

    the end of November....if you're breathing is being affected, then you need to see someone ASAP.  You might just need something simple to fix what's going on....but breathing pretty important.   It could easily be caused by the radiation treatments....as they say it's "the gift that keeps on giving"....

    p

    Thank you so much for

    Thank you so much for replying, just getting some advice makes me feel better ! It was ENT that said it was rad effects but going to do what you both suggest and get my appointment with him brought forward and ask to be scoped. Than you again.

  • wmc
    wmc Member Posts: 1,804
    #5
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    They said it all............

    Glad to hear you're getting the appointment moved up. I don't understand not doing a xray because you had one in Feb. as that is eight months old. When my lung collapsed I had an xray every day for nine days. Some ENT's only use mirrors abt I do prefer the ones that use a scope.  I do find it odd that if someone has radiation, if they have a symptom they say it is from radiaton, but never checked to see. If they do not find anything, get a second opinion.

    Bill

  • ncle54
    ncle54 Member Posts: 3
    #6
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    wmc said:

    They said it all............

    Glad to hear you're getting the appointment moved up. I don't understand not doing a xray because you had one in Feb. as that is eight months old. When my lung collapsed I had an xray every day for nine days. Some ENT's only use mirrors abt I do prefer the ones that use a scope.  I do find it odd that if someone has radiation, if they have a symptom they say it is from radiaton, but never checked to see. If they do not find anything, get a second opinion.

    Bill

    A collapsed lung, I cannot

    A collapsed lung, I cannot even imagine how terrible that must have been! Also agree with you about the xrays, and if my gp says that again I will tell her about you having 9 ! Had some bloods taken by GP today and if they come back negative got to have peak flow charts done. Still trying to get new appointment with Ent hopefully get that sorted tomorrow. Thank you for your reply, if I'm honest I am feeling worried. Have been reading a lot of old threads and you people here are an inspiration.

     

    Ann

  • denistd
    denistd Member Posts: 597
    edited February 5 #7
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    ncle54 said:

    A collapsed lung, I cannot

    A collapsed lung, I cannot even imagine how terrible that must have been! Also agree with you about the xrays, and if my gp says that again I will tell her about you having 9 ! Had some bloods taken by GP today and if they come back negative got to have peak flow charts done. Still trying to get new appointment with Ent hopefully get that sorted tomorrow. Thank you for your reply, if I'm honest I am feeling worried. Have been reading a lot of old threads and you people here are an inspiration.

     

    Ann

    X=Rays

    Hi Ann, I too am from England but I live in the US. It's been more than 6 years since I had radiation and chemo. Radiation is something that is always going to be lurking somewhere in the body. I tend to get tired easily but thats about it, I did lose my teeth and my thyroid did quit, but no big deal there. The thought of not x-raying because you had one in February is ludicrous, for pete's sake you had radio. Most get scanned and x-rayed a few times a year for the first couple of years. I tend to think it is the radio. A British girl has satrted a great page an Radio on facebook, her name is [Content removed by CSN Support Team] and the page is Radio the gift that keeps on giving, look it up lots of good stuff, Dr. Itzhak Brook is on there almost Daily.

     

  • wmc
    wmc Member Posts: 1,804
    #8
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    ncle54 said:

    A collapsed lung, I cannot

    A collapsed lung, I cannot even imagine how terrible that must have been! Also agree with you about the xrays, and if my gp says that again I will tell her about you having 9 ! Had some bloods taken by GP today and if they come back negative got to have peak flow charts done. Still trying to get new appointment with Ent hopefully get that sorted tomorrow. Thank you for your reply, if I'm honest I am feeling worried. Have been reading a lot of old threads and you people here are an inspiration.

     

    Ann

    FYI it collapsed twice

    My right lung collapsed twice, one right after the other. The first time it was half collasped, and when I went to the ER for the second time I told the nurse it had collasped. Wow, she got this attitude from hell. Just what makes you think your lung collapsed. I was 31 at the time. I replied because it had just collapsed two weeks before and I just got out of this hospital. She then rushed me back and put me on oxygen. The doctor came in and asked, how much collapsed. I replied 1/3. He said I was right but why did I guess 1/3. I said it doesn't hurt as much as when it was half collapsed. So for the ten day stay for each time it was xrayed everyday. So in thirty days I had a total of 18+ xrays. After it collapsed the second time they did a special treatment so it would not do it again, it worked as i'm 64 now. I will never forget that treatment. The pain was off the charts and they doubled the meds and added two shots of morphine, fron 1 ~ 10 it was an 11+.

    We will keep you in my prayers. 

    Bill

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