Received Possible First NED

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Drivingdaisy
Drivingdaisy Member Posts: 263
in Head and Neck Cancer #1

Hi Everyone,

Lisa here, Going on 6 wk post-treatment.  Cancer located left tonsil area, HPV+.   Saw my ENT last week for a scope of the mouth and throat. Pictures were taken.  Compared to the "Before" pictures taken in January, the mass is no longer raised and is systemical to surrounding healthy tissue.  My ENT pronounced it a "Positive Report" with no sign of disease.  Hugs were given and received. This week I saw both the Rad & Chemo Drs and both gave me the Congradulations/ Thumbs Up on the Report.  Follow up PET scan in 2 wks (I know, sooner than the usual 3 months).  Should I really consider this NED or wait for further confirmation from the Scan?  Both Cancer Docs, when questioned, kept saying Very, Very, Positive Outcome.  As close to saying.....Cancer Is gone.   Not sure I know how I truly feel yet.  January I was alone when I received the news. I did not cry.  My ENT felt so bad and hugged me as I left, still not a tear.  Shock I thought at first?  No, more of a surreal feeling.  When I got home and told my husband I said, "hey, all my doctors have said I am a bit abby-normal.  Medically I fought through quite a few problems, some rare, some that don't make sense but are there nevertheless, some fought with fear and pain. Guess I can fight this too".  Treatment as I have posted was horrific.  Recovery is going rough also. There is definitely nothing easy about this cancer. It SUCKS!  Do I feel like a Cancer Survivor, Not Really.  Cancer "Treatment" Survivor....Yes!  Hope to be a Cancer "Recovery" Survivor.... Definitely!  Will I ever feel Cancer "Free".....Don't think so!  I kind of feel this disease has changed my life in oh so many ways.  "Live in the Moment" and "One Day at a Time" have so much more meaning now.  Who's to say I won't be approached by this disease again.  Myself, family, friends, it could be right around the corner waiting to rear its ugly head again.   So many, many thoughts and feelings right now. As Scarlett would say....... "Tomorrow IS Another Day!".

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  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #2
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    Thank You

    To Everyone on the this Forum;

    Thank you all so very, very much for the responses, information, and support.  Oh how I wish I would have found this forum earlier.  Reading all the different Posts has really given me insight and education regarding this type of cancer.  I now feel more knowledged speaking with my different Chemo Drs.    Boy, have I surprised them with some of my questions.  I no longer feel alone trying to grasp what to expect and feel with treatment and recovery.  I have a place to go to help me find answers, to find support, and someone who has ......"been there done that".  Not pity, just understanding.  Thank you, thank you so much.  What a Great Group.  Big Hugs to All

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    NED ahead

     

    Lisa,

     

    It all sounds very positive and NED is very positive, indeed.

     

    If you keep it up, one NED at a time, until they consider you cured.

     

    Good luck with your “new normal”.

     

    Matt

     

  • wmc
    wmc Member Posts: 1,804
    edited June 2016 #4
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    NED......... Oh so nice to hear.

    Celabrate your NED, and any and every milestone you have. You did good..

    Bill

  • the_wife
    the_wife Member Posts: 184
    #5
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    Yay!

    Lisa,

    Sounds like good news to me! I think until you hear otherwise, you can be considered NED. The scan in 2 weeks may just confirm what your doc is telling you now. 

    I'm so glad you've found this forum helpful! And YES, I agree - this particular cancer - the treatment and recovery - is a very tough battle, but you made it! Technically, you are considered a survivor from the moment you are diagnosed, and always will be. Go out and celebrate! 

    Happy Healing!

  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
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    Don’t worry

     

    After fighting NPC 3 times you kind of give up on the worry part for the it will be what it will be part. Just live everyday as it were your last, don’t take things for granted, enjoy living and being with your family and loved ones. As far as normal goes we are all as normal as we can be, it is called our New Normal.

     

    Tim

     

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited June 2016 #7
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    Drivingdaisy said:

    Thank You

    To Everyone on the this Forum;

    Thank you all so very, very much for the responses, information, and support.  Oh how I wish I would have found this forum earlier.  Reading all the different Posts has really given me insight and education regarding this type of cancer.  I now feel more knowledged speaking with my different Chemo Drs.    Boy, have I surprised them with some of my questions.  I no longer feel alone trying to grasp what to expect and feel with treatment and recovery.  I have a place to go to help me find answers, to find support, and someone who has ......"been there done that".  Not pity, just understanding.  Thank you, thank you so much.  What a Great Group.  Big Hugs to All

    CT Scan Results

    Received the results from my follow-up CT scan.  Throat and neck clean.  NED.  I now feel I can breath a sigh of relief.  First the visual scope and now the scan, clean.  YEA !!  Also saw a Dentist Specialist and he gave me a big thumbs up on the condition of my gums and teeth.  No, visual signs of any decay, cavities, gum issues, nice and pink looking.  Feels if we work hard for the next year we can hopefully prevent future problems.  Since I do get some saliva briefly now and then he hopes that too will come back closer to my old normal.  Oh some great news to digest and enjoy.  Helps make the future look that much brighter.  PS:  Thank you again for the recommendation of the Zylamelts.  Has helped especially during the night and I am getting a bit better saliva first thing in the morning.  I can just rinse my mouth out with warm water and have my tea and shake.  Don't have to do the extended cleaning like I have had to do half asleep. Relaxing.

  • MrsBD
    MrsBD Member Posts: 615 Member
    #8
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    NED

    You not only got a NED, it's a double NED and a good report from the dentist too! I'm so happy for all your good news. 

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #9
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    Thank you

    Thank you all for the supportive, kind, words of encourgement and Congradulations.  After so many negatives these wonderful positives are so reassuring.  I AM a Survivor!  

  • SusanUES
    SusanUES Member Posts: 125
    #10
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    Great news!!!!

    Super happy to read this, Daisy! Everything's gonna be roses from here on in...and sunshine, lollipops, rainbows...you know the song!

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