How long have you survived

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  • Deeocala
    Deeocala Member Posts: 2
    #222
    dotty4577 said:

    My first post, just wanted
    My first post, just wanted to say how good it feels to have found this blog. I was diagnosed with AdCC 9/2010. Had removal or resection of the Hard pallet 1/11 and in 3/11 I had a 2nd surgery of removal of positive edges from my septum. Other lumps were found in my neck and on my thyroid, but, they were negative for malignancy. It has been almost five months since the surgeries and I have not recieved any rads. I am on my feet and even though i am being told to have rads. I don/t want to. I would like to hear some of your thoughts on taking this position. I am having a serious problem managing this orator/prostetic hard pallet,

    Hi Dotty

    I have just been diagnosed with SCC Stage 2 tongue cancer this May 2013. I have had surgery with some removal of my tongue, floor of tongue, and radical neck dissection. No mets to other areas, and no positive lymph nodes. I am still going through effects from the surgery and was told yesterday that I should have Radiation. I will go to the consult but like you, I am not wanting any treatments. The way I see it, it is a 50/50 chance of reoccurance no matter which way you go. There are so many side effects with the radiation and chemo, I just want to get to feeling better and go from there. I rather have a better quality of life than quanity. Like I have been told it is your discision to make, but it is nice to hear other view points. I would like to get view points on pallative care.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #223
    Deeocala said:

    Hi Dotty

    I have just been diagnosed with SCC Stage 2 tongue cancer this May 2013. I have had surgery with some removal of my tongue, floor of tongue, and radical neck dissection. No mets to other areas, and no positive lymph nodes. I am still going through effects from the surgery and was told yesterday that I should have Radiation. I will go to the consult but like you, I am not wanting any treatments. The way I see it, it is a 50/50 chance of reoccurance no matter which way you go. There are so many side effects with the radiation and chemo, I just want to get to feeling better and go from there. I rather have a better quality of life than quanity. Like I have been told it is your discision to make, but it is nice to hear other view points. I would like to get view points on pallative care.

    deeocala, i'm afraid ur post

    deeocala, i'm afraid ur post will be overlooked in the middle of this post.  i suggest u copy and paste ur post into a new one.  that way u r sure 2 get the responses u r loking for.

    i'm sorry about ur situation.  i'm a chicken myself so i would choose 2 have the rads.  i would fight it w/all that they offer.  the rads r rough but very doable.  it takes a while to recover from rads, but u do eventually.  i had 35 rad trmnts which seems 2 be the standard.  most who have posted had 35.

    i wish u the very best what ever u decide.  i hope u have family to discuss ur options with.

    dj

  • toomuch
    toomuch Member Posts: 1
    #224
    I'm now 3.5 years in

    I'm now 3.5 years in remission. Stage 3 right tonsil. 33 radiation hits to right tonsil area only and 7 chemo sessions. Took a while to get back on my horse. But can now road bike further than I did prior to my cancer. Silver linings can be found.

  • Roar
    Roar Member Posts: 269 Member
    #225
    9 months 7 days

    since my last treatment - unknown primary - one lymph node removed

  • lamata60
    lamata60 Member Posts: 3
    #226
    4 years, 2 mos. post

    4 years, 2 mos. post treatment

     

  • JGE
    JGE Member Posts: 51
    #227
    How long have you survived

    5 YEARS from start of treatment. 99% physically back to normal but for dry mouth and Synthroid. Mentally, different attitude and appreciation regarding life!  ;)

  • Steve5
    Steve5 Member Posts: 147
    #228
    abbimom said:

    still here
    I am 10 years post treatment. I had squamous cell carcinoma of the tongue and it metastisized to the lymphnodes in my neck.

    Inspired

    Thank you for posting, I was just diagnosed with Advanced SCC and will meet for the first time with a Dr. on the 22nd of 2013 - I want to write what you did, 10 years post treatment and still here -

    Steve5

  • louhou13
    louhou13 Member Posts: 46
    #229
    dotty4577 said:

    My first post, just wanted
    My first post, just wanted to say how good it feels to have found this blog. I was diagnosed with AdCC 9/2010. Had removal or resection of the Hard pallet 1/11 and in 3/11 I had a 2nd surgery of removal of positive edges from my septum. Other lumps were found in my neck and on my thyroid, but, they were negative for malignancy. It has been almost five months since the surgeries and I have not recieved any rads. I am on my feet and even though i am being told to have rads. I don/t want to. I would like to hear some of your thoughts on taking this position. I am having a serious problem managing this orator/prostetic hard pallet,

    Hi Dotty, found this post of

    Hi Dotty, found this post of yours and facing the radiation decision. I previously had radiation to the region 20 years ago and fear the worst of worst side effects. How are you doing and did you do any other treatments? 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #230
    louhou13 said:

    Hi Dotty, found this post of

    Hi Dotty, found this post of yours and facing the radiation decision. I previously had radiation to the region 20 years ago and fear the worst of worst side effects. How are you doing and did you do any other treatments? 

    Briefly

    Dotty was only here briefly..., actually only a week if you look at her profile...

    John

  • Viilik70
    Viilik70 Member Posts: 73
    #231
    Survivor

    first diagnosed with squamous cell when I was 25 and then I got it again when I turned 39 along with Hodgkin's lymphoma and kicked its butt and now I'm 43 and keepin on keepin on! God bless you all and keep your chin up pressing forward in this fight!

    John J

  • Crazymom
    Crazymom Member Posts: 339 Member
    #232
    survived

    19 months since I finished rads!   Ann

  • sukichu61832
    sukichu61832 Member Posts: 12
    #233
    2years cancer free

    Two years cancer free. T1 N1. P-16 positive. Left tonsil removed with neck dissection. One node involved, but they took out 30. Then, 30 rad treatments. Lost 90 pounds but have now gained back 30. Minor issues with swallowing, otherwise feel great!  It's a rough road for a few months, but gets much better. I was told by my oncologist that I am "cured". Still, there is that little fear .....:-)

     

  • catfish_58
    catfish_58 Member Posts: 138 Member
    #234
    6 months

    6 Months  now and counting.

  • billrobin
    billrobin Member Posts: 6
    #235
    catfish_58 said:

    6 months

    6 Months  now and counting.

    It will be 8 years to the

    It will be 8 years to the month since diagnosed with scc stageIV left tonsil. It seems like a long time because I tried to live each day.

    I am grateful to find this site.

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #236
    Fire34 said:

    3 years now
    3 years now. SCC of the right lymph nodes unknown primary. Clinical trial with Erbitux at U of Chicago. 8 weeks of induction chemo with Erbitux, Carboplatin & Taxol Then 5 alternating weeks of concurrent chemo/twice daily rads again with Erbitux,5FU & hydroxyurea.

    U of Chicago!!!

     

    I just saw your post. I was diagnosed in August 2013 with tongue cancer after biopsy of a non-healing leison on my tongue. 

    Sept 2013 had the lesion removed at U of Chicago. Margins all clear.  Oct 2013, neck resection to remove lymph nodes for biopsy all clean. January 2014, PET showed one lymph node (encapsulated). Had surgery to remove lymph node and submandibular gland. PET two weeks ago show tumor near the same site. 

     

    I havent had radiation or chemo but that's coming next. After the surgery I will meet with Dr. Haraf, (radiology)  Dr. Villaflor (medical oncology). So, I have no idea what they will recommend or how this will go. 

    I wanted to connect with you to see how you did with treatment and who your doctors were. Did you have proton beam radiology or IMRT? How did you do? What is your opinion of the hospital?

    My surgeon is Dr. Langerman

     

    thanks so much 

    bunnymom

  • Debi16043
    Debi16043 Member Posts: 53
    #237
    3 year survivor jaw bone cancer

    I had all teeth removed, cancer cut out, new jaw bone made from leg bone anod radiation.  Still here.  All reports have been good

     

  • Vivian589
    Vivian589 Member Posts: 1
    #238
    2 years and 6 months

    T0 n2b mo

    unknown primary- metastatic lymph notes left with extra capsular spread on left

    chemoradiation-  

    NED!!!!!!    Hope this is encouraging for those out there who are anxiously awaiting their two year mark

  • rush1958
    rush1958 Member Posts: 223 Member
    #239
    4 Years Out

    I'm four years out from the end of treatment. I saw the good folks at KU Medical this week for my six month check up and all is well.

    Rush

  • kingcole42005
    kingcole42005 Member Posts: 178
    #240
    Survivor!

    Diagnosed 9/10 High Grade Mucoepidermoid Carcinoma, submandibular, Still alive and kicking! Doc says with every passing year less and less of recurrance, Yay me! Smile

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #241
    kingcole42005 said:

    Survivor!

    Diagnosed 9/10 High Grade Mucoepidermoid Carcinoma, submandibular, Still alive and kicking! Doc says with every passing year less and less of recurrance, Yay me! Smile

    four years

    My husband is a four year survivor of hypopharyngeal cancer Stage IVa.

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