Primary found... the journey continues

D Lewis
D Lewis Member Posts: 1,581 Member
edited March 2014 in Head and Neck Cancer #1
PET-CT Tuesday showed asymetric increased metabolism in the right side of the tongue base and hypermetabolic bilateral cervical lymph nodes. Also, a 4 mm right upper lobe nodule of the lung (non-specific and below the resolution of the PET). Wednesday, my ENT did a Direct Laryngoscopy, Brochoscopy, and Esophagoscopy, with tissue biopsies and Tonsillectomy. ATER tonsil removal, he went to the abnormal area at the base of tongue, which was very small, and was able to get a pathologist to take an immediate frozen section, which showed that to be the area of the primary. Woot. I don't have the final word on all the biopsies, but the ENT seemed very pleased about his findings. I will go to Stanford next Thursday, to meet with their Tumor Board for treatment recommendations. It appears they can treat me locally, based on the Stanford recommendations.

So, for the moment, I'm temporarily incapacitated by the effects of the tonsillectomy. It is everything you all promised me that it would be. The ENT's staff thoughtfully telephoned me yesterday to warn me that days 4, 5 and 6 "would be the worst". Yep. I'm suspecting this is mostly owing to the sheer number of biopsy samples collected, but my swallower has completely rebelled, and is propelling fluids up into my sinuses rather than downward. I was great until I tried to eat Cream of Wheat. Feels like my sinuses have been wall-papered. Those wheaty bits will probably be up there forever. To paraphrase Scarlett O'Hara; "As God is my witness, I will never eat Cream of Wheat again..."

Mick & Steve, keep those updates coming. I'm right behind you. You guys are my heros.

warmly,

Deb L.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    Not a journey
    So glad for you they found your primary. It is much more a roller-coaster than a journey though. My last trip to mexico was a journey however. Best regards and recovery from the tonsils.
  • delnative
    delnative Member Posts: 450 Member
    #3
    Hang in there
    I'm glad they found the primary, and believe me, I feel your pain when you write of your tonsillectomy.
    It's just a shame about the Cream of Wheat. That was the first "solid" food I was able to eat after my radiation ended, and it went down real well.

    --Jim in Delaware
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    YUP
    YUP, it gets worse a few days after, but doesn't last too long (comparatively speaking)....

    I could tolerate things like, mac-n-cheese, pudding, mashed potatoes and gravy... Not so much on cold things though. You always hear you can eat a lot of ice cream. Ice crean was way too cold for me to tolerate though.

    I usually preceeded any attempts to eat something with pain med solutions, choked the food down quickly and ran for a warm shower. Not sure why, but a warm shower always took my pain away rather quickly....

    Good Luck and congrats on finding the primary.
    John
  • stevenl
    stevenl Member Posts: 587
    #5
    Skiffin16 said:

    YUP
    YUP, it gets worse a few days after, but doesn't last too long (comparatively speaking)....

    I could tolerate things like, mac-n-cheese, pudding, mashed potatoes and gravy... Not so much on cold things though. You always hear you can eat a lot of ice cream. Ice crean was way too cold for me to tolerate though.

    I usually preceeded any attempts to eat something with pain med solutions, choked the food down quickly and ran for a warm shower. Not sure why, but a warm shower always took my pain away rather quickly....

    Good Luck and congrats on finding the primary.
    John

    Tonsillectomy
    Hi Deb,
    I am still here for you, I am not going anywhere. Sorry about the tonsillectomy, it is a real bummer, but just ask me and I'll help you if I can. Glad they found the primary and it sees there was not too much involvement on the tongue itself which I think is a good thing.
    My pet showed 2 areas of involvement on the tongue but turned out it wasn't there. Hang in there.

    Blessings,
    Steve
  • MaryRC
    MaryRC Member Posts: 114
    #6
    primary
    I am so glad that they found your primary! I hope they find mine. I havent even heard from my doctors yet as to when the surgery will be, could be a few weeks yet.
    I had been thinking about you and wondering how you were.
    Mary
  • micktissue
    micktissue Member Posts: 430
    #7
    updates
    Awesome news Deb. I'm updating on my personal website www.justwrite.us because my family and all want updates too so it's easier for me to update in one place where anyone can see it.

    Hang in there. The random biopsies on me were indeed the worst of it after the neck dissection and all. Swallowing hurt but that didn't stop me from eating whatever they threw at me.

    Best,

    Mick
  • stevenl
    stevenl Member Posts: 587
    #8
    micktissue said:

    updates
    Awesome news Deb. I'm updating on my personal website www.justwrite.us because my family and all want updates too so it's easier for me to update in one place where anyone can see it.

    Hang in there. The random biopsies on me were indeed the worst of it after the neck dissection and all. Swallowing hurt but that didn't stop me from eating whatever they threw at me.

    Best,

    Mick

    keep posting
    Hey Mick,
    I'll check out your blog, but please don't forget us here. Your wisdom and knowledge are much needed and inspirational to us all. Hang in there with your treatment man, I know it is not easy.

    Take care,
    Steve
  • micktissue
    micktissue Member Posts: 430
    #9
    stevenl said:

    keep posting
    Hey Mick,
    I'll check out your blog, but please don't forget us here. Your wisdom and knowledge are much needed and inspirational to us all. Hang in there with your treatment man, I know it is not easy.

    Take care,
    Steve

    not leaving CSN
    The blog is just so I can post updates in one place. I am a member of *this* community and, as the man said, wild horses couldn't drag me away.

    Best,

    Mick
    www.justwrite.us

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