feeling stupid

supagama
supagama Member Posts: 31
in Head and Neck Cancer #1

Hello everyone!

I have commented on a few posts here before and always find everyone's experiences enlightening and promising.  I feel really stupid, sometimes, tho when I read about different types of head and neck cancers.  I have finished 37 weeks of radiation and 6 chemo/cysplatin...AND I DON'T EVEN KNOW WHAT MY CANCER IS CALLED!!  It was diagnosed with a lump under my right ear (lymph node, I'm assuming) and the cancer was covering my soft palate.  I had a NED just before Christmas, which is fine but have another sore near my salivary gland/ear on my right side now.  It was biopsied and scoped and it showed negative for cancer.  It hurts terribly (worse than the original cancer on the palate) and the pain radiates into my ear and up to the top of my head.  My radiation oncologist thinks it may be a radiation burn or maybe an infection of some kind.  My ENT wants me to get another quadroscopy because he is sure it must be cancer.  Anyone else had anything like this.  I finished treatment August 27, 2015.  Becuse of the radiation, my soft palate is completely gone, and I haven't been able to wear my dentures since before treatment.  I have very limited range of motion in my jaw now, as well, so eating is becoming more and more difficult.  I haven't had a feeding tube up to now but am looking forward to getting one soon.  I also need an opterator but that can't be fitted until the jaw problem is dealt with.

It seems like just one thing after another.  I did get my taste buds and appetite back but thick soups and ensure are the only things I can eat and am having more trouble with aspirating even those.  If anyone can identify what kind of cancer I have (I know I shouldn't be afraid to ask) please let me know...and if any of these post treatment side effects sound familiar, I'd love to hear from you.  Just one more thing:  I am also having a problem with pain management.  I was managing pretty well on toradol, but they figure I've been taaking too much for too long so switched me to hydrocordone, which helps with the pain, but makes me so sleepy and dizzy that I cann barely function.  Any suggestions would be greatly appreciated!

Take care all,

Wendy

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Wendy

    Join the club, when I first went through this I was the same way, and what I found there are no wrong questions. We all do the best we can with what we are told and with it all coming to us at one time we get overwhelmed and want to run and hide till it is over, just that it is never over. Glad to hear the NED report and a far as the pain goes you might need the doctor to prescribe pain meds, don’t be afraid of them it is all a part of your new normal that helps us work in a un-normal world.

     

     

     

    Tim

     

  • LiseA
    LiseA Member Posts: 266
    #3
    Hondo said:

    Hi Wendy

    Join the club, when I first went through this I was the same way, and what I found there are no wrong questions. We all do the best we can with what we are told and with it all coming to us at one time we get overwhelmed and want to run and hide till it is over, just that it is never over. Glad to hear the NED report and a far as the pain goes you might need the doctor to prescribe pain meds, don’t be afraid of them it is all a part of your new normal that helps us work in a un-normal world.

     

     

     

    Tim

     

    What does NED mean?
     
    I am so

    What does NED mean?

     

    I am so sorry you're in pain, and I hope you get some answers soon.

     

    I am new, and not much help, but wanted to read your post and at least acknowledge it.

     

     

  • supagama
    supagama Member Posts: 31
    #4
    LiseA said:

    What does NED mean?
     
    I am so

    What does NED mean?

     

    I am so sorry you're in pain, and I hope you get some answers soon.

     

    I am new, and not much help, but wanted to read your post and at least acknowledge it.

     

     

    welcome!

    Hi LiseA and welcome to this forum.  Sorry you have to be here, but you can learn a lot and get a lot off your chest to people who truely understand how you feel.  My advice to you is not to be afraid to ask questions.  As Hondo said on here, we can get so overwhelmed with information and treatment options...combined with terrible fear and confusion, we just want to drag the covers over our head and shut it all out.  So ask...and listen.  Good luck!

    Wendy

  • Barbaraek
    Barbaraek Member Posts: 626
    #5
    LiseA

    This is a safe place to post ANY question, so never feel stupid! Cancer is frightening and complex so sometimes you have to ask questions several times over! It's very natural to feel anxious and worried. MDA is a top notch facility - you will be in good hands. Meanwhile we will be keeping you in our prayers, so keep posting and hang in there.

    Barbara

  • LiseA
    LiseA Member Posts: 266
    #6
    Barbaraek said:

    LiseA

    This is a safe place to post ANY question, so never feel stupid! Cancer is frightening and complex so sometimes you have to ask questions several times over! It's very natural to feel anxious and worried. MDA is a top notch facility - you will be in good hands. Meanwhile we will be keeping you in our prayers, so keep posting and hang in there.

    Barbara

    Thank you Wendy &

    Thank you Wendy & Barbara.

     

    And Cass for NED.

  • yensid683
    yensid683 Member Posts: 349
    #7
    Trusting the Radiation Oncologist

    Nothing like getting conflicting information.

     

    I learned to mistrust my radiation oncologist.  I was 1 week after completing radiation treatments (summer of 2012, seems 'long ago in a galaxy far away' now, and had soreness in the muscles on the right side of my neck, opposite from the site of the primary tumor.  The RO dismissed it as 'radiation side effects'.  5 weeks later my wife put her foot down and point blank said "isn't there something we can do about this?"  the RO ordered an ultrasound of the neck, color me surprised when the tech told me I had a clot!

    turned out that my infusion port (power port) had caused a clot in the right jugular.  I got the #$@#$$ scared out of me when the doctor came into the room and said "I have to tell you, this is life threatening".  I spent the weekend in the hospital on anti-coagulants, had an emergency removal of the port on Monday, and spent the next 5 months on coumadin.

    All because the radiation oncologist didn't think it was something to worry about.

    Get it checked, don't depend on a quick assessment.

    Wishing you the best

    Peter

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #8
    LiseA said:

    Thank you Wendy &

    Thank you Wendy & Barbara.

     

    And Cass for NED.

    Foot Note

    LiseA,

     

    My surgeon or oncologist never heard that saying either so you're not the only one.  It's a good word here and we never tire of seeing it posted.

     

    Welcome to the forum,

     

    Tom

  • supagama
    supagama Member Posts: 31
    #9
    yensid683 said:

    Trusting the Radiation Oncologist

    Nothing like getting conflicting information.

     

    I learned to mistrust my radiation oncologist.  I was 1 week after completing radiation treatments (summer of 2012, seems 'long ago in a galaxy far away' now, and had soreness in the muscles on the right side of my neck, opposite from the site of the primary tumor.  The RO dismissed it as 'radiation side effects'.  5 weeks later my wife put her foot down and point blank said "isn't there something we can do about this?"  the RO ordered an ultrasound of the neck, color me surprised when the tech told me I had a clot!

    turned out that my infusion port (power port) had caused a clot in the right jugular.  I got the #$@#$$ scared out of me when the doctor came into the room and said "I have to tell you, this is life threatening".  I spent the weekend in the hospital on anti-coagulants, had an emergency removal of the port on Monday, and spent the next 5 months on coumadin.

    All because the radiation oncologist didn't think it was something to worry about.

    Get it checked, don't depend on a quick assessment.

    Wishing you the best

    Peter

    just getting worse

    Thanks, Peter and yes you really do have to stand up for yourself with the Drs. sometimes.  This pain (right under my right ear at the site of the primary tumor) is getting much worse.  Even the hydrocordone doesn't really relieve it much.  Because I can barely open my mouth, my radiation oncologist couldn't get a very good look at it so now I wait until I see my ENT Dr. on Feb 11, and see what he thinks.  I just don't know what to do til then.

    Thanks everyone for your kind thoughts and prayers

    Wendy

  • MrsBD
    MrsBD Member Posts: 617 Member
    #10
    Physical therapy

    Wendy, I'm very sorry you have so much pain. Were you given any physical therapy or exercises to do? People on this site have said, "Swallow, swallow, swallow." because you don't want to lose that ability. My cancer team went even further,  saying I needed to stretch, do swallowing exercises and generally keep all my parts moving. In the 16 months since my treatment ended,  I've only missed a few days, but I can sure tell when I do. Maybe doing some gentle exercises will help you regain some of what you lost. As far as the area of pain, do you think you may have developed thrush or shingles since the last biopsy? Both can cause pain. My sister had lots of pain with shingles on her face, but only a couple of tiny pimples. You're in my prayers and I hope you will get relief soon. 

    Beth

  • supagama
    supagama Member Posts: 31
    #11
    MrsBD said:

    Physical therapy

    Wendy, I'm very sorry you have so much pain. Were you given any physical therapy or exercises to do? People on this site have said, "Swallow, swallow, swallow." because you don't want to lose that ability. My cancer team went even further,  saying I needed to stretch, do swallowing exercises and generally keep all my parts moving. In the 16 months since my treatment ended,  I've only missed a few days, but I can sure tell when I do. Maybe doing some gentle exercises will help you regain some of what you lost. As far as the area of pain, do you think you may have developed thrush or shingles since the last biopsy? Both can cause pain. My sister had lots of pain with shingles on her face, but only a couple of tiny pimples. You're in my prayers and I hope you will get relief soon. 

    Beth

    PEG Tube Today

    Well I am finally getting a PEG tubrted today.  We are hoping by not irritating my jaw by eating, I will get some relief from this pain!

    I was always determined not to have a feeding tube (not sure why), but now am looking forward to anything that will allow me to eat without the pain. 

    Will update you in a couple days and let you know how it went..thanks for your prayers!

    Wendy

  • kdot2003
    kdot2003 Member Posts: 143
    #12
    yensid683 said:

    Trusting the Radiation Oncologist

    Nothing like getting conflicting information.

     

    I learned to mistrust my radiation oncologist.  I was 1 week after completing radiation treatments (summer of 2012, seems 'long ago in a galaxy far away' now, and had soreness in the muscles on the right side of my neck, opposite from the site of the primary tumor.  The RO dismissed it as 'radiation side effects'.  5 weeks later my wife put her foot down and point blank said "isn't there something we can do about this?"  the RO ordered an ultrasound of the neck, color me surprised when the tech told me I had a clot!

    turned out that my infusion port (power port) had caused a clot in the right jugular.  I got the #$@#$$ scared out of me when the doctor came into the room and said "I have to tell you, this is life threatening".  I spent the weekend in the hospital on anti-coagulants, had an emergency removal of the port on Monday, and spent the next 5 months on coumadin.

    All because the radiation oncologist didn't think it was something to worry about.

    Get it checked, don't depend on a quick assessment.

    Wishing you the best

    Peter

    Hi

    Hi, I had that same pain.  Opposite side from my tumor and lymph nodes.  It hurt like HELL.  It was like week two of radiation.  The pain became worse over several days and I had just about had it.  My rads oncologist was very concerned and my other one was too.  I saw both the same day.  They ordered a port study to check for clots.  The pain was just above my port.  That was negative and the next week the pain subsided never to return.  Just thought that was very interesting.  You had a clot and they didnt check.  Scary.  Glad you are ok.  

    Karen

  • kdot2003
    kdot2003 Member Posts: 143
    #13
    Hi there

    Hello, 

    I dont have anything helpful to offer you but I pray your pain does get better.  A G-tube is not that bad and I hope it helps.  Hugggs

    Karen

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #14
    you are smart, you are here!

    Wendy,

    Squamous Cell Carcinoma (SCC), is the type of cancer I had.

    Nasopharyngeal Carcinoma (NPC), is another cancer found in this form.

    But quite frankly I do not know what you have.

    I had my ENT write it down.  He told me it was located on the base of my tongue (BOT) and silly me “I said  ”is it throat cancer”  and he said ” no, it’s base of tongue cancer”.  So, now I get it right every time

    A visit to the Superthread can answer many questions.

    A visit to the doctor can go either way.

    A visit to a restaurant, try to act natural, good luck.

    A visit to this form, what a relief, understanding.

    Have a nice trip finding your new normal.

    Matt

  • wmc
    wmc Member Posts: 1,804
    #15
    Matt covered it about as good as you can.

    Head & Neck cancer is one of the worst treatment to go through. It also covers so many different kinds. This is not even a complete list as there are some very rare oned where they only have had 1000 cases since 1929, but we have had 3 here. Sorry this are not links, just a photo to help you see some of the types there is. So with H&N there is no silly or stupid questions if you don't know that is normal. 

    Mine was Supreglottic stage 3 and removed my larynx and I now breath through a hole in my neck called a stona. Now my primary care doctor told me he did not know how to give me oxygen. So you are not alone. Many nurse's don't have any idea. It is not rocket science, put the oxygen tube just in the hole [you can't miss it] and tape the hose to my chest. Now you would think that is easy, right. No they will try to put it in my nose and the nose only holds up my galsses, no air will get to my lungs. Now on a good note. My lung doctor really likes it because to scope my lungs he just drops the scope down the hole and he's there. Welcome to the "New Normal"

     

    image

    Bill    Oct 2013     and still NED

     

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #16
    LiseA said:

    What does NED mean?
     
    I am so

    What does NED mean?

     

    I am so sorry you're in pain, and I hope you get some answers soon.

     

    I am new, and not much help, but wanted to read your post and at least acknowledge it.

     

     

     

     

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