Had a swallow test..what to expect now

msm51
msm51 Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
Hi All,

My husband finished radiation and chemo on November 10, 2009. He has been unable to eat or drink anything since 10/10/2009. He had a swallow test done today and the results were that
when he swallows it is heading down his windpipe. The therapist recommended 2 swallowing exercises and on 1/5/2010 he will have further treatment in the office. Have any of you had this problem and did the therapy allow you to eat and drink again.

My husband is very upset and I think afraid to some degree that life will never be normal again. Any feedback would be appreciated.

Thanks

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    swallowing
    What they don't always tell us, msm, is that radiation continues to cook for quite some time after the last treatment. From that perspective, your husband may really STILL be in treatment. I have heard and read a bunch of comments about how long the cooking continues, so cannot pinpoint that for you, but some of the estimates are six weeks and even up to three months.

    In any event, at this point in time, hub is still cooking, I would imagine.

    Swallow tests are fairly routine for those of us who have experienced head/neck cancer and subsequent treatment, and one of their primary purposes is to assure that we are not aspirating (swallowing down the wrong pipe, not a good idea in the opinion of our lungs :)). Additionally, these tests allow the medical professionals to then assess (as in hub's case) what the problems are, if there are any, and how to then correct them.

    You can probably figure out that if everyone gets them the situation hub is facing right now is not atypical: it happens to quite a few of us or they wouldn't include the test as a part of normal post-treatment care, eh?

    I like to think that the test is not a pass/fail but, msm, a measuring stick. The fact that he is aspirating now does not mean that he will always aspirate.

    Since you do not mention surgery, I am assuming that there was none, and would therefore bet that, barring severe radiation scarring of the permanent variety, hub is starting to eat again within the next couple of months.

    I am a strong proponent of the therapy route, msm, and in fact had both a speech therapist (who was the one who worked with me, truly, with respect to re-learning to swallow) and a physical therapist who was practiced in the ways of treating head/neck cancer survivors, to the point that she had special exercises, massages, and so on, that we got into twice weekly for the duration.

    Do not let husband miss his therapy sessions, try as he might, eventually, to avoid them (I know I did on occasion: all of the appointments can feel overwhelming after a point, not to exonerate myself :)).

    As for life getting back to normal, there is a phrase used extensively on this site that has validity: a 'new normal' is what people strive for.

    It is hard to consider how someone could have this sort of dramatic disruption of life, one that normally comes out of the blue and normally, instinctively, sounds like a death sentence (it is not), to say nothing of the effects of treatment and subsequent physical and mental alterations, WITHOUT needing a new game plan!

    Even so, it need not be a limited game plan: it can be one that includes previously unrealized growth and appreciation for life and for those around us. THAT part of the deal is up to us.

    I had my surgery for head/neck cancer (tongue/neck) in October of '05, msm, and was still in treatment, rads and chemotherapy, through the following holidays, so I know how going through this at this time of year can make it that much more frustrating ... for ALL of you.

    I wish you and your hub and your loved ones a wonderful holiday, warm in the knowledge that you are all still alive, still together, and that things WILL get better!

    Take care,

    Joe
  • msm51
    msm51 Member Posts: 2
    #3
    soccerfreaks said:

    swallowing
    What they don't always tell us, msm, is that radiation continues to cook for quite some time after the last treatment. From that perspective, your husband may really STILL be in treatment. I have heard and read a bunch of comments about how long the cooking continues, so cannot pinpoint that for you, but some of the estimates are six weeks and even up to three months.

    In any event, at this point in time, hub is still cooking, I would imagine.

    Swallow tests are fairly routine for those of us who have experienced head/neck cancer and subsequent treatment, and one of their primary purposes is to assure that we are not aspirating (swallowing down the wrong pipe, not a good idea in the opinion of our lungs :)). Additionally, these tests allow the medical professionals to then assess (as in hub's case) what the problems are, if there are any, and how to then correct them.

    You can probably figure out that if everyone gets them the situation hub is facing right now is not atypical: it happens to quite a few of us or they wouldn't include the test as a part of normal post-treatment care, eh?

    I like to think that the test is not a pass/fail but, msm, a measuring stick. The fact that he is aspirating now does not mean that he will always aspirate.

    Since you do not mention surgery, I am assuming that there was none, and would therefore bet that, barring severe radiation scarring of the permanent variety, hub is starting to eat again within the next couple of months.

    I am a strong proponent of the therapy route, msm, and in fact had both a speech therapist (who was the one who worked with me, truly, with respect to re-learning to swallow) and a physical therapist who was practiced in the ways of treating head/neck cancer survivors, to the point that she had special exercises, massages, and so on, that we got into twice weekly for the duration.

    Do not let husband miss his therapy sessions, try as he might, eventually, to avoid them (I know I did on occasion: all of the appointments can feel overwhelming after a point, not to exonerate myself :)).

    As for life getting back to normal, there is a phrase used extensively on this site that has validity: a 'new normal' is what people strive for.

    It is hard to consider how someone could have this sort of dramatic disruption of life, one that normally comes out of the blue and normally, instinctively, sounds like a death sentence (it is not), to say nothing of the effects of treatment and subsequent physical and mental alterations, WITHOUT needing a new game plan!

    Even so, it need not be a limited game plan: it can be one that includes previously unrealized growth and appreciation for life and for those around us. THAT part of the deal is up to us.

    I had my surgery for head/neck cancer (tongue/neck) in October of '05, msm, and was still in treatment, rads and chemotherapy, through the following holidays, so I know how going through this at this time of year can make it that much more frustrating ... for ALL of you.

    I wish you and your hub and your loved ones a wonderful holiday, warm in the knowledge that you are all still alive, still together, and that things WILL get better!

    Take care,

    Joe

    Thanks for yout time to reply
    Hi Joe,

    Thanks for taking the time to reply. My husband did not have surgery. He had a tumor on his epiglottis that they removed part of during the biopsy and they rest taken care of with the treatment(35 radiation & 2 chemo). The doctors told us much of what to expect to some degree but the extent of swallowing problems, they length of time on the feeding tube and the amount of phelm is far beyond what we expected. I know once we are all through this it will be a small price to pay to be cancer free as so many never get that opportunity. Happy Holidays to you and your family and thanks again for your time!!

    Wendy
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Wendy
    Glad to have you here with us on CSN, this is the place to go for help, as a lot of us have had much of the same problems and side affects. If your husband is just getting out of treatment then it is normal not to be able to swallow very well. In time everything heals and we adjust to the new Normal, the body is an amazing piece of Gods work in that it has the ability to make repairs and adjustments in order to survive. Don’t let him become depressed find things that he enjoys, a big key to healing is a positive attitude; you have both been through a ruff time but it is all down hill now. Take care and may God bless you both through the holidays

Discussion Boards