URGENT - Panic

Suez39
Suez39 Member Posts: 165 Member

HI all H&N members. I had my CT scan last week and I saw my ENT doctor today. He said my CT scan showed their was a "mass" in my larynx. They eliminated my original tumor on the base of my tongue and left tonsil. Now a year and a half later he suspects the cancer came back. Not just because scan said their was a mass but because I have ear pain and a paralyzed vocal cord. My question is Are CT scans always right? Do they give false reads? Also just because I have the ear pain and vocal cord problem doesn't mean I have cancer. I said the mass could be scar tissue. My doctor more or less gave me my death sentence. He said if cancer came back I would not make it. Their would be nothing they could do but give me meds to prolong me awhile. If they did surgery I would have my voice box and larynx taken out. I would never do that!! I was so upset walking out of the office. I'm not ready to die yet. I fought so hard. Please respond if you can help me. Any suggestions appreciated. Hugs! Susie

Comments

  • tbret
    tbret Member Posts: 76 Member
    He said that?

    Well, I don't know how to respond to this, exactly.  My doctors told me that if my cancer (stage 4b) came back there were "things we could do" depending on where it came back.  I don't believe I've ever even heard of another doctor who said, "If it comes back, you are going to die!"   Then you said that "They could give me meds to prolong me awhile."  

    I don't doubt anything you've said, but I find it really hard to understand why someone would say something that stupid and then say "take out your voice box and larynx" in the same month, much less the same office visit.

    You know the referred ear-pain is a thing.  It's a real thing.  So whenever I have ear-pain I instantly go into "OMG! It's back!!!"  In my case I have been lucky and it's just been some temporary ear pain, but I am always fearful that it is more.  I have no idea what else might paralyze a vocal cord.

    Let's say that you are facing something awful and I will, really, pray that you aren't.  Let's say they do a pretty radical surgery and you end-up with some permanent disabilities due to it.  That does NOT mean your life is going to be 100% miserable or that you are never going to be happy again or any of that stuff.  I recently met a man whose wife had a very radical surgery (years ago when they knew less about what they were doing) and she healed fine and feeds the grandkids (she didn't have children until after the surgery) fresh cookies and is now asked to come speak to survivor groups and medical students which she happily does.

    I am well aware that sometimes things don't turn-out to be miraculously good, as I know you are.  But, my suggestion is to realize that "there's nothing we can do" and "meds to prolong" and "take out your larynx" are three completely different statements and so you probably ought to wait until someone tells you what to worry about, specifically, before you worry about everything all at once.

    I wish I could hold your hand or give you a hug or something.  Sometimes the anxiety this stuff causes is worse than the side-effects of the treatments. I had an "up all night" friend who would text me words of encouragement when it all got to be too much.  I hope you have someone who can do the same type of thing for you.

    I hope and pray that there is a different explanation than a recurrence for your symptoms.  

     

     

  • caregiver wife
    caregiver wife Member Posts: 234
    Make no major decisions in a panic!

    Many here can attest there are different options for recurrence.  Many have had treatment and gone back into remission.  Hang in there.  We are here for you.  You need much more information.  Are you going to see oncologist?

     

    Love, Crystal

  • DarcyS
    DarcyS Member Posts: 81 Member
    Second opinion

    So sorry to hear about your doctor's appointment and results.  Please consider going for a second opinion somewhere else.  Not sure where you live or where you have your treatments, but a teaching hospital with a tumor board is my recommendation.  Try not to lose hope, stay strong and advocate for yourself.  

  • swopoe
    swopoe Member Posts: 492
    You can’t know it is cancer

    You can’t know it is cancer unti a biopsy, right? Please get a second opinion. I hope you are ok and it is nothing. Hugs and prayers!

  • Pclark21st
    Pclark21st Member Posts: 126
    I wouldnt take that for

    I wouldnt take that for certain without a biopsy and a PET scan.  Not sure where you live but like said, you need to go to a cancer center with a tumor board where they will ALL discuss your case and come up with options...there are options.  I believe in having the truth, but that seemed harsh.

  • debbiel0
    debbiel0 Member Posts: 134 Member
    As tbret said.. an all night

    As tbret said.. an all night friend can be very helpful. Family and friends are irreplaceable,  but I am offering my ear and shoulder if you need a place to vent and speak freely.  

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    I agree with Others

    I think they have to do a biopsy and have it lab checked to verify official cancer. "It's not cancer till they say it's cancer" and a biopsy I thought was the only way to do that. Definitely get a second opinion and have them relook at your scan and they may want you to get another or maybe a PET scan to verify things for sure. God Bless

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    Our thoughts are with you

    Our thoughts and prayers are with you on this journey -please do as otehrs suggested to get that second opinion and biopsy.  We are here for you every step of the way - I have a twin sister so we are sending Twin Hugs.  Much Love to you.  God Bless 

  • Suez39
    Suez39 Member Posts: 165 Member
    Thank you!

    Thank you everyone for your feedback. Right now I'm waiting for my date for a pet scan. Hopefully it won't light up anywhere. I will definitely keep you guys posted. The hospital I go to is a teaching hospital with a cancer center. Unfortunately my ENT is the "head" of all the doctors there. I don't like him that much cause he is not informative or sympathetic. He should of never scared me by saying if my cancer is back I would have to have voice box & larynx out. Or have medicine that really wouldn't help me. A professional doctor wouldnt say Anything until he knows for sure if cancer is back. I hate being at the mercy of doctors especially jn the operating room for biopsys or surgeries. . I'm almost thinking of getting someone to be my advocate who knows a patients rights. 

  • ERomanO
    ERomanO Member Posts: 323 Member
    Sorry you have to deal with this

    You may be onto something regarding a patient advocate.  Even having someone with you that can be a second set of ears that can ask questions and isn't afraid to be very firm with the doc(s).

  • jroco
    jroco Member Posts: 25
    Susie, sorry you are in this

    Susie, sorry you are in this situation. Im from over at the kidney cancer forum. My mom had throat cancer so I look at this one from time to time. My mom just had a total laryngetomy using a flap from her chest. Though this was not easy on her, I will say now after 2 months she is a different person both eating and breathing.  If this is the surgery you need, I think you should consider a second opinion. I with you the best.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    I am on Team Susie

    Suez39 (aka Susie), 

    It sounds like your ENT is not very nice and extremely insensitive to your feelings,  I wrote to you  4 times during March 2018 and you were going through a lot of  stress at that time with getting things ready for treatment to start, i.e. your mask, driving yourself or riding to treatments, meds, etc..  I did not speak with you after you started so I am assuming that you did alright, you did completed the series of treatments designed for you and you DID NOT  get ALL the side effects possible? At least hope you did ok.

    Is this the same doctor you had at the beginning?  If it is, he knows how sensitive you are (from the initial staring of treatment. Your ENT is your oncologist for your cancer?  I do not recommend him for your Christmas list unless he redeems himself soon. I don’t know if it matters, but is he sure this is new cancer and not a part of the original cancer? Oncologists usually go after H&N cancers fairly aggressively and they are very good at killing it.  To call this “new” cancer a mass, makes me wonder how they missed it?

    You really need the biopsy of any potential cancer and a PET scan of the whole area.  I thought that the CT scan was for sizing the cancer and the PET scan was to show all areas of potential concern.

    I say do not fret yet, there are too many unknowns (currently) and any talk of removing your voice box at this time is premature.  Remember you can seek more opinions on this and sometimes that is the way to go.

    I estimate that you went through treatments during April and May of 2018 and had your 1 year post checkup around the end of May or start of June.

    I am a bit nosey and if you do not want to answer, I will understand.

    Matt