Checking in

Suez39
Suez39 Member Posts: 165 Member
in Head and Neck Cancer #1

Hi all H&N members:

Had CT scan that showed "mass" in my throat. So doc ordered a pet scan. Had pet scan and results were NED. No cancer recurrence. That was the good news. Bad news is my left vocal cord still paralyzed and blocking my airway. I have trouble breathing. But I'm dealing with it, cause will not have a possible permanent trach put in my neck. I'm still on a feeding tube as it is. Can't try swallowing soft foods with my breathing like it is. So seeing a specialist at the end of the month to see what they can do for breathing. I know he will want to do some type of surgery. And I was told chances are they would put trach in because once you have surgery your throat swells and closes up. Just want to take my chances and leave my throat alone. My ENT a few months ago scoped me and wanted to do a biopsy cause scan showed mass. But if he did biopsy said trach might get put in. So i declined the biopsy. Pet scan showed no cancer. So if I listened to my doctor and had biopsy I would have trach in now. So goes to show they don't always make good decisions. I think I was over radiated and that's why I'm having these issues. I'm not the type to follow all the doctors orders if I feel their wrong. They are not ALWAYS right.  Well sorry for venting. Just wanted to share my story. Hope all of you are getting better or making progress. Hugs - Susan

Comments

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #2
    Thanks for sharing your story

    Thanks for sharing your story and very good news on pet scan for NED.  Hope you can get your airway cleared up I am sure the other members might have good suggestions on this ariway issue.  But good news is NED.  God Bless and keep us posted on the airway progress. I am praying for no trach if you have to have surgery there must be a way they can avoid this from happening. 

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #3
    Susan Glad You Are NED

    But sorry you are having a problem with breathing. Hopefully, they can get your situation straightened out. Sometimes miracles happen and maybe more time will change your vocal cord that it will not be paralyzed anymore. I realize there may be an operation in the future when you decide or not and it may require a trach but I pray that it is only temporary. Either way, our prayers are with you to give your doctors and you the wisdom to work this all out with a wonderful outcome-Thanks for sharing your story-venting is good-we're here for ya-God Bless

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited September 2019 #4
    VERY GOOD!

    Susan,

    I know that if I look at the full moon in September just prior to the fall equinox I often find what I like to call a “H&N MOON”.   That is, a moon where you  can see some of our forum members who have had a NED bestowed upon them. I looked and you were there.

    Congratulations on your  NED. I hope everything else falls in line.’

    Matt

    m

  • skidog
    skidog Member Posts: 74 Member
    #5
    civilmatt

    Hey...where is my NED moonshot???

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6

    Skidog,

    You were (and are there) you just needed to zoom in a little more to see your “Moon NED”.

    A bigger question I have for you is, “what is your official 1 year, post treatment (to be technical about it) date?” You see, I have 2 other NED celebrations for you, a 3 month during October 2018 and a 6 month during February 2019 which should have your  1 year post treatment date drop-out somewhere in July or August.

    Also, I am sorry I did not make it to your 1 year NED celebration.  Tell me, was it nice and most importantly are you enjoying ice cream with each NED?

    Matt

    sd

     

    skidog at 3 months NED

    3m

    skidog at 6 months NED

    6m

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #7
    CivilMatt can you add me to the moon base NED landing

    HI CivillMatt, You are truly my hero in all that you write about I really enjoy reading each and everyone of your posts - you are so special and always uplifting and comforting and I really like the moon base can I be added to it?  I am 3 Mo NED.  God Bless and Thank you kindly. 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    Sabrina23 said:

    CivilMatt can you add me to the moon base NED landing

    HI CivillMatt, You are truly my hero in all that you write about I really enjoy reading each and everyone of your posts - you are so special and always uplifting and comforting and I really like the moon base can I be added to it?  I am 3 Mo NED.  God Bless and Thank you kindly. 

    well, well, well, here you go.

    Sabrina23,

    It is very kind of you to say those things. There were a number of truly nice and kind H&N members on (or in) this forum when I joined so I liked to think I learned from the best. Quite frankly, many still pop-up on occasion and make their presents and condition be known. For instance, I see that Fishmanpa checked-in on the Roll Call the other day. He was a “special” member for a number of reasons.  One thing I remember vividly was he named his cancer Jack and dropped some pictures on us of Jack.  I normally refrain from calling one ugly, but Jack really was a tough one to look at.

    Sabrina23 I did locate you on the H&N Moon, but I had to get some help (as you can see).  There are times when I am serious and others when I am not.

    Also I would be violating one of my personal rules for this forum if I didn’t acknowledge that this is Suez39 thread and I do not intend to take over her post.  I do get carried away some times, but my intensions are sincere.

    Now, everybody who has not left a message on the current Roll Call, do it now and make my day.

    Matt

     

    gg

  • nancytc
    nancytc Member Posts: 70 Member
    #9
    Hi Suez39

    I havent talked to you since when you first went into treatment. I have always felt a connection of course as we had similar treatments and your personality was fun. I just wanted you to know that I am rooting for you big time! One thing I have learned to do, is think of my oral cavity as any other area of the body that needs exercise. Every day (usually in the shower) I do a series of humming, swallowing every which way, singing with my awful voice, stretching my mouth open etc. I think of it as "pumping iron" at the gym. I hope and pray that you will start to show improvement in swallowing, breathing, and your vocal cords. I also used a lot of massage, accupuncure, and very important HYDRATION. I think about you often and I will specifically pray for improvement for you!!!

    Best,

    Nancy

  • Sabrina23
    Sabrina23 Member Posts: 103 Member
    #10
    CivilMatt said:

    well, well, well, here you go.

    Sabrina23,

    It is very kind of you to say those things. There were a number of truly nice and kind H&N members on (or in) this forum when I joined so I liked to think I learned from the best. Quite frankly, many still pop-up on occasion and make their presents and condition be known. For instance, I see that Fishmanpa checked-in on the Roll Call the other day. He was a “special” member for a number of reasons.  One thing I remember vividly was he named his cancer Jack and dropped some pictures on us of Jack.  I normally refrain from calling one ugly, but Jack really was a tough one to look at.

    Sabrina23 I did locate you on the H&N Moon, but I had to get some help (as you can see).  There are times when I am serious and others when I am not.

    Also I would be violating one of my personal rules for this forum if I didn’t acknowledge that this is Suez39 thread and I do not intend to take over her post.  I do get carried away some times, but my intensions are sincere.

    Now, everybody who has not left a message on the current Roll Call, do it now and make my day.

    Matt

     

    gg

    May I just say Love you to the Moon and back CivilMatt

    Love you to the Moon and back CivilMatt!!!  Will do roll call as well.  Thank you for everything you do! God Bless All. My prayers and thoughts are with everyone on this forum to be NED!  

     

    Sabrina 

  • Suez39
    Suez39 Member Posts: 165 Member
    #11
    Thank You

    Thank you everyone for your responses. I have an appt with a new doctor regarding my breathing problem towards the end of this month. Hope he gives me good options that can pursue. I am so thankful for this forum and for everyone who posts on here. Nobody can really understand what we have been through unless they've walked in our shoes. My ENT told me throat/mouth cancers are on the rise. I think it had to be ranked as one of the worst cancers to get. It affects your speech, ability to eat and drink, and energy levels. Takes away your quality of life. But our faith in God truly helps cause he is the only one who can save us from this devastating disease.

  • Suez39
    Suez39 Member Posts: 165 Member
    #12
    Civil Matt

    Love the moon base! So cool. Hope many more names can be added!

  • ERomanO
    ERomanO Member Posts: 323 Member
    #13
    Suez39, when I first was

    Suez39, when I first was consulted by my RO he said they probably over-treat, but they want to thoroughly zap the tumor and are not going to chance it by reducing the number of rads.  Also, when he was showing me the radiation map he listed all the things they were able to avoid during radiation, and one of those things was my voice box.  When I picked up my dental trays the technician said he looked at my chart before I got there, thwn looked at me with a little grin and said "You know you are very fortunate that the tumor was located where it was".  So maybe little variables (i.e. exact location of the tumor) can make a difference in how the rads affect the body.

  • MrsBD
    MrsBD Member Posts: 617 Member
    #14
    CivilMatt said:

    VERY GOOD!

    Susan,

    I know that if I look at the full moon in September just prior to the fall equinox I often find what I like to call a “H&N MOON”.   That is, a moon where you  can see some of our forum members who have had a NED bestowed upon them. I looked and you were there.

    Congratulations on your  NED. I hope everything else falls in line.’

    Matt

    m

    To Susan and Civil Matt

    After a few months hiatus, I decided to check how the H&N team is doing. Susan, I was diagnosed in 2014 and in the last year had lots of trouble breathing at night and often during the morning as well. Nothing seemed to help until the ENT suggested Nasacort spray. I have a damaged vocal cord from radiation and get tons of mucus clogging my airway. Nasacort, the name brand one, not generics or store brands, has made an amazing difference. Maybe it will help you, or maybe not, but it's worth a try. You'll be in my prayers as are the other CSN members.

    Matt, you must have added my name to the dark side of the moon. I'll ask NASA for a photo next time they go around.

    Wishing you all well!

  • Suez39
    Suez39 Member Posts: 165 Member
    #15
    Mrs BD

    Thank you so much for your suggestion! I have an appt with new doctor to address breathing problem so I will mention Nasacort spray. Was your vocal cord paralyzed also? I will not have trach put in. I'm adamant on rhat. Appreciate your response.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #16
    Suez39 said:

    Mrs BD

    Thank you so much for your suggestion! I have an appt with new doctor to address breathing problem so I will mention Nasacort spray. Was your vocal cord paralyzed also? I will not have trach put in. I'm adamant on rhat. Appreciate your response.

    Tracheostomy

    Hi Suez,

    A lot of us have had to have a tracheoztomy-- it just comes with the territory, in many of our cases.

    I am Sure that I will have to have another one, at some point. 

    My G tube is permanent, because my huge tumor damaged/ altered my swallow, long before my first surgery.  But I have adapted to it and it's just part of my life !!  And I do have a Life, even with tube feeding.

    When I have to have another tracheotomy tube, I will have to adapt again...no, I won't like it.....but the inside of my Oral cavity has shrunk, due to having 6 tumors in 2 years time, and the multiple surgeries....And Radiation too, of course.  And I have a very small trachea...

    In addition to all the SCC tumors I've had, I also have a pre-malignant lesion by my vocal cords.  Really bad place. I've had laser surgery to Zap it once, and he will look at it again soon.

    I hope you can avoid a tracheostomy, ....but it might become necessary.  Life is worth living!

    LitlCJdoll

    By the way, I am 76 pounds... I was down to an incredible 64 pounds with my huge primary tumor, and for my first surgery (7+ hour surgery) I survived it by the skill of my surgeon & his team.   I am forever Grateful for them !!

  • MrsBD
    MrsBD Member Posts: 617 Member
    #17
    Suez39 said:

    Mrs BD

    Thank you so much for your suggestion! I have an appt with new doctor to address breathing problem so I will mention Nasacort spray. Was your vocal cord paralyzed also? I will not have trach put in. I'm adamant on rhat. Appreciate your response.

    Vocal Cord

    Suez, the last time I saw the ENT, he mentioned vocal cord damage. I'll ask him at my next appointment later this month. In the morning and if I don't have enough water, my voice is quiet and squeaky. Singing is totally out since it sounds like a cross between a toad and an adolescent boy, if any sound comes out at all. But I'm alive! 

  • Suez39
    Suez39 Member Posts: 165 Member
    edited October 2019 #18
    MrsBD

    Thank you for trying to find out about damaged vocal cord for me. My right one is oaralyzed. (They don't know exactly which one. Hard to see from the scope. I appreciate your help and everyone else here on the forum who responded. It truly means a lot to me.

  • Logan51
    Logan51 Member Posts: 468 Member
    #19
    Suez39

    Hoping and Praying for the best solution(s) to come your way.

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