Just found Throat Cancer(supraglottis)with spread to the neck.

Bill1958
Bill1958 Member Posts: 67
in Head and Neck Cancer #1

Hi!  I am a 59 year old male!  I noticed a small mass on the right side of my neck on December 27th 2017 and this mass grew to golf ball size or bigger by january 10th.  I saw my regular doctor on Feb 5th 2018 and from there the monster in me was discoverd.  The ultra sound showed the mass to be cancer and my doctor and the local surgen said it was cancer.  Went to a ENT and he scoped me and found growth on the supraglottis(ares of the voice box) and said it was cancer.  Not one doctor really did much with the mass except feel it and act suprised and worried to me!  No Biopsy at this point.  I have an appointment for a catscan and consultation february 16th 2018.  Not sure about what will happen from there on.  I am in pain in my neck and headaches are bad at night.  I, like alot of others have researched my symptoms and in my opinion I don't have much of a chance at survival.  My spirit is constanly admonishing me for all my missed opporntunities to be a reall good man and just how narcisstic I was and still am by missing the chance to do my best.  I know it may be too late for redemption and It may sound phony to want this now but I really need it.  I do not want to die and I do not want my spirit to be in mental and physical agony as I do die.  This is all sorrowful and like torture.  I need help to find some positives in all this and I can't do it alone!

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Comments

  • Pclark21st
    Pclark21st Member Posts: 126
    #2
    Hey Bill1958...you are not alone

    Bill, sorry to hear your story.  First and foremost, you cannot beat yourself up over what happened in the past, you can only take this time and show yourself and people you care about the kind of person you want to be moving foward.  You cannot change the past, don't waste your energy you need to heal over that and don't let anyone push it on you.  This fight is hard and you need to have positive energy and people around you.  You need to be your own advocate and push them to get a biopsy. Only then can they determine the best treatment for you.  If you have HPV, not that you want it, but in the throat cancer world, that's a plus...who knew.  We are new to this world ourselves and you must read all about it, but then garner what actually applies to you. There are similarities to all, but everyone is different.  This is a great site to hear from people who have actually gone or are going through this.  Insist on a biopsy and get into a good hospital and cancer center.  We started with Beth Isreal in Boston and are now doing outpatient through their Plymouth site.  I caould not be more pleased with the service and care they are goving us all along the way.  Good luck and keepin touch.  You are so not alone.

  • MikefromWinthrop
    MikefromWinthrop Member Posts: 31
    #3
    Pclark21st said:

    Hey Bill1958...you are not alone

    Bill, sorry to hear your story.  First and foremost, you cannot beat yourself up over what happened in the past, you can only take this time and show yourself and people you care about the kind of person you want to be moving foward.  You cannot change the past, don't waste your energy you need to heal over that and don't let anyone push it on you.  This fight is hard and you need to have positive energy and people around you.  You need to be your own advocate and push them to get a biopsy. Only then can they determine the best treatment for you.  If you have HPV, not that you want it, but in the throat cancer world, that's a plus...who knew.  We are new to this world ourselves and you must read all about it, but then garner what actually applies to you. There are similarities to all, but everyone is different.  This is a great site to hear from people who have actually gone or are going through this.  Insist on a biopsy and get into a good hospital and cancer center.  We started with Beth Isreal in Boston and are now doing outpatient through their Plymouth site.  I caould not be more pleased with the service and care they are goving us all along the way.  Good luck and keepin touch.  You are so not alone.

    Beth Israel

     I completed my treatment for squamous cell bot and 1 lymph node there on nov 15th. Great team there. I will attend the survovor group this month.

  • Bill1958
    Bill1958 Member Posts: 67
    #4
    Pclark21st said:

    Hey Bill1958...you are not alone

    Bill, sorry to hear your story.  First and foremost, you cannot beat yourself up over what happened in the past, you can only take this time and show yourself and people you care about the kind of person you want to be moving foward.  You cannot change the past, don't waste your energy you need to heal over that and don't let anyone push it on you.  This fight is hard and you need to have positive energy and people around you.  You need to be your own advocate and push them to get a biopsy. Only then can they determine the best treatment for you.  If you have HPV, not that you want it, but in the throat cancer world, that's a plus...who knew.  We are new to this world ourselves and you must read all about it, but then garner what actually applies to you. There are similarities to all, but everyone is different.  This is a great site to hear from people who have actually gone or are going through this.  Insist on a biopsy and get into a good hospital and cancer center.  We started with Beth Isreal in Boston and are now doing outpatient through their Plymouth site.  I caould not be more pleased with the service and care they are goving us all along the way.  Good luck and keepin touch.  You are so not alone.

    I agree Pclark21st.  Thank

    I agree Pclark21st.  Thank you and I will take heed to your kind words!  I am here and that is where fate has brought me.  I wish all good luck and peace!

  • caregiver wife
    caregiver wife Member Posts: 234
    #5
    Don't listen to Dr. Google!

    Husband had LARGE mass all the way down his throat, not operable.  I think that was 2009.  He is still here, NED (no evidence of disease).  Treatment is hard, but doable.  Scan will give doctors a pretty good idea what they are dealing with and what treatments will best suit you.  Consultations should include your oncologist who may need biopsy results to decide best treatment options. This group is wonderful and will be here to help you along every step of the way.  This is NOT a death sentence.  Do not hesitate to ask doctor for help with pain relief.  Your musings only show to me your kind heart.  

    Hugs,

    Crystal

  • Bill1958
    Bill1958 Member Posts: 67
    #6
    caregiver wife said:

    Don't listen to Dr. Google!

    Husband had LARGE mass all the way down his throat, not operable.  I think that was 2009.  He is still here, NED (no evidence of disease).  Treatment is hard, but doable.  Scan will give doctors a pretty good idea what they are dealing with and what treatments will best suit you.  Consultations should include your oncologist who may need biopsy results to decide best treatment options. This group is wonderful and will be here to help you along every step of the way.  This is NOT a death sentence.  Do not hesitate to ask doctor for help with pain relief.  Your musings only show to me your kind heart.  

    Hugs,

    Crystal

    Thanks for your words too

    Thanks for your words too caregiver wife and great news to hear of positive results with your husband.  My wife and daughter are telling me the same thing:  don't research things, think positive on a one-day-at-a-time thing, and wait until the catscan and consultation, and then "TACKLE" what you know. This "Cancer Survivor Network" has helped in giving me hope.  

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    welcome

    Bill1958,

    Welcome to the H&N forum, I am sorry that you are here.

    Don’t be too tough on yourself about time gone by.  If you are determined to test positive for cancer, your doctors will come up with a plan to get rid of it.  Who knows you may be very receptive to treatment and this will all be put behind you in a few months.

    Matt

  • Bill1958
    Bill1958 Member Posts: 67
    edited February 2018 #8
    CivilMatt said:

    welcome

    Bill1958,

    Welcome to the H&N forum, I am sorry that you are here.

    Don’t be too tough on yourself about time gone by.  If you are determined to test positive for cancer, your doctors will come up with a plan to get rid of it.  Who knows you may be very receptive to treatment and this will all be put behind you in a few months.

    Matt

    Thanks CivilMatt.  Your words

    Thanks CivilMatt.  Your words are encouraging and hopeful.

     

  • christine2080
    christine2080 Member Posts: 71
    edited February 2018 #9
    Get ready for the fight of your life

    My husband had symptoms similar to yours, but was diagnosed with SSC BOT HPV+ stage 4. He completed 35 rounds of radiation and 6 of Cetuximab on November 21. He started treatment on October 4. He lost 40-45 pounds, but didn’t need a food peg. Gain as much weight as you can before you begin treatment. Get cozy pjs and a nice, soft blanket. Also, buy 2 soft pillowcases. My husband has spent a lot of time on the sofa recovering from the treatment. You can and will survive the treatment, but it’s tough. Surround yourself with as much positivity and comfort as you can find. This site will be your lifeline. The advice I got here got my husband through many of the darkest times. Reach out to everyone here.

  • swopoe
    swopoe Member Posts: 492
    #10
    When my husband was diagnosed

    When my husband was diagnosed, I just thought we were done. I was preparing to raise my kids on my own. But this board, amazing doctors, and good treatment got us through. two and a half years later, my husband is free of disease and doing great.  Treatment is rough- my husband had radiation and chemo (cisplatin) but there are many tips we can give to help get you through. Sending all my best.

  • Bill1958
    Bill1958 Member Posts: 67
    #11
    A meaningful day

    No, I have not come to grips with the news 6 days ago that I have this so named cancer.  I am still thinking the worse and don't even know what obstacle to tackle at this time.  I have read up and understand how having an alkaline body chemistry may help but right now I am trying to put on as much weight as possible in the case I am lucky enough(or unlucky enough) to warrant treatments.  I am trying do  one day at a time and I am looking and seeking my higher power.  Today I have taken a hike with my dog and we went 4 miles or more in the snow and it felt good and tonight I will be playing a full show with my 5 piece band. Thanks and this group is so positive, I appreciate it more and more in just these few days here! 

  • denistd
    denistd Member Posts: 597
    edited February 2018 #12
    Supraglottic cancer

    OK Bill, musos don't get so down, music lifts you up, especially when you play in a good band, I have played in bands in England and here in the US since the early 60's, I had cancer of the larynx in 2009 and went through 35 rads and 3 high dose cisplatin chemo's.9 years ago and still here. Go listen to some Queen and your favorite musicians. You wil get treated, it will be rough, you will survive, just like Gloria Gaynor sang. What type of music do you play?

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    edited February 2018 #13
    No Google

    Bill, please try to only listen to your doctors and what you read here on CSN.  There is a wealth of information to be had on the Superthread and our members have walked in your shoes.  Try your best to avoid Google because it tends to give mostly a negative view of a diagnosis.  Once I found this site I stopped trying to research the internet and was less worried and better informed by doing so.

    The doctors have done this before.  Seek out the best of the best for your treatment.  Ask your doctors who they would go to.  Be prepared to travel to get the best treatment.  Your mental health and possibly your life depend on it.  The survival rate is very good.  Keep that in mind going forward.

    You'll get through this but it'll be hard on you.  A few years from now you'll be doing a lot better.  Try to stay positive. 

  • Bill1958
    Bill1958 Member Posts: 67
    #14
    This discussion board is really helping

    I really appreciate the positive and real feedback from this group.  I made it through my show with my band and it was just a pleasure to jam with the band and the people there.  My band is going to support me and perhaps help more with cancer help programs by doing more benefits and more.  It was a little ruff with my neck mass but no one even said or seemed to be bothered by it.  I am holding hope for all of us in this boat Less than a week until catscan and consultation.  

     

  • OKCnative
    OKCnative Member Posts: 326 Member
    #15
    I remember right before my

    I remember right before my treatment for stage 3 SCC BOT cancer began - I my neck node had enlarged to the size of a baseball. People couldn't help but stare at it.

    My first ENT wanted to perform neck dissection immediately. I fired him. My second ENT just laughed and said it will go down, then we'll decide what to do after treatment.

    I'm 4.5 months post treatment and the node has returned to normal with no signs of cancer.

    It's a tough road, but totally doable.

    STAY OFF GOOGLE! When I first looked online for answers, the only ones I got were that I was going to die and I only had maybe 5 years. Then I found this site and met with my doctors and was told I had a 90% chance of curing this.

  • Bill1958
    Bill1958 Member Posts: 67
    edited February 2018 #16
    OKCnative said:

    I remember right before my

    I remember right before my treatment for stage 3 SCC BOT cancer began - I my neck node had enlarged to the size of a baseball. People couldn't help but stare at it.

    My first ENT wanted to perform neck dissection immediately. I fired him. My second ENT just laughed and said it will go down, then we'll decide what to do after treatment.

    I'm 4.5 months post treatment and the node has returned to normal with no signs of cancer.

    It's a tough road, but totally doable.

    STAY OFF GOOGLE! When I first looked online for answers, the only ones I got were that I was going to die and I only had maybe 5 years. Then I found this site and met with my doctors and was told I had a 90% chance of curing this.

    The insight and experience of others is amazing to me!

    Thank you for responding OKCnative!  Your words and other's words from this sight are helping me and my family more than I can say here.  I have learned the term, "Dr. Goggle" and this doctor has only shown me more fear of the unknown! One day at a time and tackle what is before me(US) as it does no good to tackle speculation.  I love life and I appreciate all of it and I always have and hope, peace, faith and love are all good things!

  • darlymay
    darlymay Member Posts: 1
    #17
    Hi everyone! I am Darla, Bill

    Hi everyone! I am Darla, Bill's wife and caretaker!  This site has been a blessing to him, and I am seeing why!  I watched my mom die from ovarian cancer almost 24 years ago, and the pain and images never go away. But friends, family and this site are pulling for Bill and with so much love and positive energy, it can only get better!!  Thank you all so much for your thoughts, kind words and prayers!  We will get through this!!! 

  • Bill1958
    Bill1958 Member Posts: 67
    #18
    types of music we do to "denistd"

    denistd my band plays evrything from Pop to country to classic rock to blues and more.  We have stuck with all acoustic sounds for 5 years now with lots of harmonica, mandolin, slide guitar and vocal harmony.  Something in playing live music both awakens and soothes my soul.  What are your tunes and enjoyments that you do with a band?

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    edited February 2018 #19
    Hi Bill

    Hi Bill

    I found this site a week ago and it has helped immensely. Last Thursday I had a cat scan and was diagnosed with SCC BOT. I also had a lymph node on my neck. YEsterday I saw my DOC 

    and he reassured me that this is beatable. The HPC cancer has suddenly become a raging epidemic it seems.. Anyway next week is biopsy and PET scan. The only thing we need to find out if I am HPV + Doc thinks everything is pointing in that direction. My treatment is going to be the same as OKC native.... 

    I know the recovery process will be difficult but I am ready to take it on.. In my youth i had major ear surgeries so i Look at this as another bump in the road.

    I am a stubborn Portagee lol I just remarried 7 years ago and brought my wife over from the Republic of Georgia.. Ill be damn if I am going to make a widow of her. 

    After you see the oconoligist i think you will feel a little better. Stay busy and active.. This soon will pass.. Its amazing how cancer treatment has improved over the last 10 years. 

    I am an old rocker myself 63 and I still have my motto "Truckin" . 

    If you want to research thats okay but don't bother with statistics. When i look at this disease we are much more than a number. We are humans who value and treasure our life.. 

    Good luck and keep in touch 

     

  • Bill1958
    Bill1958 Member Posts: 67
    #20
    Changing confusion

    Today had a Catscan and one node 4 cm or bigger and other nodes enlarged.  Also abnormal parts in throat but ent doesn't think the suopraglottis is cancer; he thinks it's a node from singing.  He does think other parts are cancerous in the throat(can't remember the name now) and the ENT thinks the cancer is spreading.  Did several needle biopsies on the enlarged node and they are inconclusive.  Threfore insurance will not cover PETscan even thogh the ENT is sure it's cancer (SCC).  So they took several more needle biopsies and a blood test to rule out any infection and we are waiting the results for the blood and other needle biopsies.  This is making us frantic with worry and back to day one when we first discovered this cancer.  I now no the terror of this disease and so do my wife and daughter.  Just need a positive to link on to.  Thanks for listening.

  • SuzJ
    SuzJ Member Posts: 446 Member
    #21
    Same as the others...

    Stay away from "Dr Google" - if we all went by that, none of us would be here.

    Listen to your Drs, and ask questions here.

    Its one day at a time, just that, dont worry about anything, until your Drs tell you to worry...

     

    We are all here, you will be too!

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