New :) Oral tongue SCC. T2N2BMX England.

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Anonymous7/6/2023
Anonymous7/6/2023 Member Posts: 176
edited October 2014 in Head and Neck Cancer #1

Hiyah,

 

 I was diagnosed with tongue cancer on 6th November 2013. T2N2BMX, poorly differentiated.

 

On 27 December I had a hemiglossectomy, radial forearm flap and abdo graft, modified radical neck dissection, temporary tracheotomy.

 

I had a PEG tube put in, then 30 sessions of radiotherapy February/March 2014.

 

I had got over the surgery fairly well, but the radiotherapy changed all that. I had a very bad time. My nurses said I had the worst case of mucositis they had ever seen. It still flares up sometimes.

 

I have lymphedema in my face and inside my mouth. I can only swallow liquids, although I do keep trying with thin puree. I'm on Ensure. I have lost 8 stone over the last 12 months. (Yeh, I was 22 stone before LOL, so I'm still "obese").

 

I have dysphasia, although people around me say it's not as bad as I think it is.

 

I have damage to my spinal accesory nerve, with the typical neuropathic pain, shoulder drop, etc. I've settled down on Tramadol for this. I was on Tramadol for a nurse's "bad back" for donkey's years before all this, and unlike Pregabalin, I have no side effects at all from Tramadol, and it seems to help a little bit. I ditched the Pregabalin after a couple of weeks, as it made me feel extremely unwell.

 

I managed to wean myself off morphine in early June.

 

I do get tired. I've got some fibrosis in my neck starting up, but it's hard to tell which is that and which is lymphedema. However, I have regular input from the lymphedema nursing team, which is helpful.

 

I have chronic toothache from receding gums - thanks to radiotherapy again.

 

I have Xerostomia. Today (during an ultrasound), I discovered that my right submandibular salivary gland is absent, presumably taken in the neck dissection, and the left parotid and submandibular glands are shrunken, thanks to radiotherapy. This means that this dreadful dry mouth probably isn't going to improve. I'll, be honest - this is devastating news for me. Xerostomia is truly unbearable, even with the assorted saliva analogues I'm prescribed. (Pilocarpine made me ill, so that's also out).

 

I had a very bad time with the tracheotomy. My trachea was deviated AND they put one in 2 sizes too large, an 8 instead of a 6. This cut into my trachea and caused slow bleeding into my lungs. I have flashbacks about choking and, well... it's not easy to talk about, but I'm having Macmillan counselling for PTSD about it. Again, this is helpful.

 

Early in May, I noticed a small, hard, mobile lump in the neck dissection scar. We all, including my Maxillofacial Consultant (who is fabulous), believed it was one of the numerous clips left inside my neck. Sadly, today's ultrasound confirmed it is not a clip, but an unidentified 'lump'. There is also a large, contralateral lymph node. A fine needle aspiration biopsy was taken today of the 'lump'. I have to wait around 10 days for the results.

 

My tumour was extremely aggressive and poorly differentiated. I'm trying to keep some perspective here, but I am a pragmatist, a realist... the results of this biopsy may not be good. It's going to be a long couple of weeks.

 

I also can't have any more time off work at all, so I'm not sure what I'd do if I need more treatment, once any remaining accrued annual leave has been exhausted. I *CAN'T* be ill again.

 

It's almost unbearable to think that, after just 4 months since radio finished, the cancer might be back. My hair hasn't even grown back yet.

 

None of this is fair. And yet this is random, arbitary.... why should things be "fair" or "unfair". Sometimes, no matter how grounded I am, things still do feel VERY unfair.

 

Anyway, this was my "hello" post, thank you for reading. I hope it's not too depressing, but I don't do 'pink wigs and fun runs'. If the evidence (ie, the biopsy result) is positive, then I can be positive. Until then, I have to just wait, and try to hold myself together in the meantime.

 

Good wishes to you, Estelle x x x

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
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    Estelle, welcome to our

    Estelle, welcome to our family.  I'm sorry  you need to be here but very glad you found us.  you've really been thru a lot.  there are a few here who have had their toungue or part of it removed.  i'm sure they will chime in soon.  several also still suffer from dry mouth and will have many suggestions for you as to what has helped/helps them.  you should check out the superthread.  it has lots of information about anything you could want to know.  if you don't find it there, just ask here and someone should be able to answer your questions.  i'm very sorry to hear you've found another lump.  that is alwasy very scary to us once we've had cancer.  we can't seem to keep ourselves from thinking the worst.  i pray it won't get the best of you.  i don't know why it takes so long to get results back, that's enuf time for us to go insane.  please let us know what the biopsy shows or doesn't show.  I will be praying it is nothing and you don't have to miss any more work.  cancer is not fair to anyone.  its especially hard when we have to go thru tx and worry about our jobs being lost b/c of it.  i will praying for you to stay well and your job not be effected.  i hope you are able to busy your mind so you have less time to worry about the biopsy.  God bless you and give you strength to make it thru  the waiting period.  also about the PTSD, several of us suffer from that and some of us take meds for it.  you may want to consider meds if the sessions don't help as much as needed.  keeping you in my prayers and i'll be waiting to hear the results of your biopsy.  you can say/ask/vent/celebrate/cry, whatever you want to here, nothing is off limits.  we will be here to encourage you and cheer you on.  you are now part of our family.

    God bless you,

    dj

  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
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    Hi Estelle

    Like Debbie say Just glad to have you a part of the CSN H&N family so welcome to the group.

    Hondo

  • wmc
    wmc Member Posts: 1,804
    #4
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    Welcome Estelle to the H&N

    Welcome to the group and sorry you need to be here, but it is the best bunch you will find. Best support group and knowledge you can find and also understand what your going through. You have gonr through way to much and now the waiting for results is the hardest. You'll be in our prayers.

    Bill

  • Goyca
    Goyca Member Posts: 220
    #5
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    welcome

    Estelle welcome to this big caring family. It seems u went through alot , but reading ur post gave me the impression that u r a strong woman :) 

    I pray the biopsy results come negative.

    goodluck:)

     

    goyca.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    Welcome Estelle....

    you have stumbled upon the best forum on the internet.....I'm so glad you found us! 

    I am also a member of the PTSD club....with a sub-membership of the dry mouth section (I have a water bottle attached to my hip, and a paper towel to wipe my lips in my back pocket at all times....seems what spit I do have wants to gunk up my mouth).  It drove me crazy at first, but time has allowed me to kind of get used to it (I'm 23 months out of treatment). 

    I am SO sorry you have to wait 10 days for the biopsy report....makes ya wonder with a lump and a possible node, why they didn't scan it and get quick results rather than to wait on an FNA.  The wait is torturous, I know (I hate having a week or more "waiting"....my mind drags me down crappy paths the entire time).  I don't know if that is being a realist, or what......I just hate suprises Smile.

    Will be sending you positive thoughts, and prayers that this turns out to be just another gift from rads....inflamed nodes, scar tissue, etc at 4 months past rads isn't rare at all.....

    p

  • Guzzle
    Guzzle Member Posts: 710
    #7
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    phrannie51 said:

    Welcome Estelle....

    you have stumbled upon the best forum on the internet.....I'm so glad you found us! 

    I am also a member of the PTSD club....with a sub-membership of the dry mouth section (I have a water bottle attached to my hip, and a paper towel to wipe my lips in my back pocket at all times....seems what spit I do have wants to gunk up my mouth).  It drove me crazy at first, but time has allowed me to kind of get used to it (I'm 23 months out of treatment). 

    I am SO sorry you have to wait 10 days for the biopsy report....makes ya wonder with a lump and a possible node, why they didn't scan it and get quick results rather than to wait on an FNA.  The wait is torturous, I know (I hate having a week or more "waiting"....my mind drags me down crappy paths the entire time).  I don't know if that is being a realist, or what......I just hate suprises Smile.

    Will be sending you positive thoughts, and prayers that this turns out to be just another gift from rads....inflamed nodes, scar tissue, etc at 4 months past rads isn't rare at all.....

    p

    Hi

    Estelle. IM a Brit. There are a few if us here. Some very special caring people here. Cancer research and McMillan also have UK forums. Sorry to hear your troubles and fingers crossed for you. G.

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #8
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    Hello! And wow - what a

    Hello! And wow - what a lovely warm welcome! Thank you everso much :)

    It really does make a difference, feeling like there are friends out there who have come through all this, survived, and are leading normal, happy lives.

    I think you are all very lovely, thank you x x x x

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #9
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    BIOPSY WAS NEGATIVE!
    I am

    BIOPSY WAS NEGATIVE!

    I am absolutely SO relieved!

    The sample was "virtually acellular" - it contained almost no cells of any sort, just some inert bit of scar tissue.

    Honestly.... what a result! So..... that's my first "scare" over with :D

  • Guzzle
    Guzzle Member Posts: 710
    #10
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    Estelle_H said:

    BIOPSY WAS NEGATIVE!
    I am

    BIOPSY WAS NEGATIVE!

    I am absolutely SO relieved!

    The sample was "virtually acellular" - it contained almost no cells of any sort, just some inert bit of scar tissue.

    Honestly.... what a result! So..... that's my first "scare" over with :D

    Chuffed

    For you!

  • donfoo
    donfoo Member Posts: 1,771 Member
    #11
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    Estelle_H said:

    BIOPSY WAS NEGATIVE!
    I am

    BIOPSY WAS NEGATIVE!

    I am absolutely SO relieved!

    The sample was "virtually acellular" - it contained almost no cells of any sort, just some inert bit of scar tissue.

    Honestly.... what a result! So..... that's my first "scare" over with :D

    Fantastic!

    Welcome.

    Trilled about the results!

    Don

  • wmc
    wmc Member Posts: 1,804
    #12
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    Estelle_H said:

    BIOPSY WAS NEGATIVE!
    I am

    BIOPSY WAS NEGATIVE!

    I am absolutely SO relieved!

    The sample was "virtually acellular" - it contained almost no cells of any sort, just some inert bit of scar tissue.

    Honestly.... what a result! So..... that's my first "scare" over with :D

    NEGATIVE is a good thing....

    Negative is a good thing to hear and what a releaf it must be for you. Thanks for letting us know.

    wmc

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #13
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    Estelle_H said:

    BIOPSY WAS NEGATIVE!
    I am

    BIOPSY WAS NEGATIVE!

    I am absolutely SO relieved!

    The sample was "virtually acellular" - it contained almost no cells of any sort, just some inert bit of scar tissue.

    Honestly.... what a result! So..... that's my first "scare" over with :D

    that is FANTASTIC!!!  i'm

    that is FANTASTIC!!!  i'm doing a happy dance to celebrate right now!!  good for you, i hope you did the happy dance too!!

    God is good.

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    #14
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    Estelle_H said:

    Hello! And wow - what a

    Hello! And wow - what a lovely warm welcome! Thank you everso much :)

    It really does make a difference, feeling like there are friends out there who have come through all this, survived, and are leading normal, happy lives.

    I think you are all very lovely, thank you x x x x

    Whoo Hoo!!!

    that is wonderful!!  And yes.....what an incredible relief.

    p

  • Viilik70
    Viilik70 Member Posts: 73
    #15
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    Estelle_H said:

    BIOPSY WAS NEGATIVE!
    I am

    BIOPSY WAS NEGATIVE!

    I am absolutely SO relieved!

    The sample was "virtually acellular" - it contained almost no cells of any sort, just some inert bit of scar tissue.

    Honestly.... what a result! So..... that's my first "scare" over with :D

    Thank God great news!! So

    Thank God great news!! So happy for you! We have all been down that dark path of not knowing and no words describe it. Please just be patient, I too had lympodemia and it eventually went away, but not without some embarrassing days at work. The healing process is slow, but it will come.

    You will be in my thoughts and prayers : )

    John J

  • hwt
    hwt Member Posts: 2,328 Member
    #16
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    Viilik70 said:

    Thank God great news!! So

    Thank God great news!! So happy for you! We have all been down that dark path of not knowing and no words describe it. Please just be patient, I too had lympodemia and it eventually went away, but not without some embarrassing days at work. The healing process is slow, but it will come.

    You will be in my thoughts and prayers : )

    John J

    Estelle

    Thankful for your good biopsy results. Hopes that your other issues find resolve. 

    Candi

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