New diagnoses with not enough info

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  • phrannie51
    phrannie51 Member Posts: 4,716
    #22
    vermontgirl said:

    So Grateful
    So I wake up this morning after trouble sleeping all night....hoping for a new post to read.....and there are so many! I can tell....I will be here often. People say that it seems we caught this early, but honestly I don't assume anything anymore. What worries me now is this cough my husband has. He had a scope in the ENT office and all they saw was enlarged tonsils...nothing else amiss. SO, I worry that the pet scan tomorrow will show lung cancer as the primary. I don't even know if squamous cells can travel from there to the nodes. But....I am trying to do what so many of you say and not borrow trouble and just go by what we know today. He has scan tomorrow and we will find what we find (or maybe nothing). Thank you all so much so your encouragement and advice.

    Living "in the day", and not borrowing trouble....
    is a learning curve...afterall we're human, and we're used to having some type of control of our lives...It takes a while to learn to get up and face this day only, leaving the tomorrows to take care of themselves. Ah, but once we get on the one day at a time train, life gets easier...It's harder on the caregivers than it is on the patients.

    Scan time is stressful, they even have a word for it here "scanxiety"...there isn't a person here who hasn't felt it...I'm even feeling it 2 weeks away from my first one which isn't until the end of this month. But I force myseolf to put it away, because today is ok, and I hate being caught up in the what-if's...they make me crazy.

    I'm not a Dr. and I'm sure not the most knowledgable person on this board, but so far I've never heard of a case where lung cancer was the primary for throat cancer. Waiting is the hardest part of all of this, I swear. The six weeks it took to get from diagnosis to the beginning of treatment just about drove me over the edge....the folks here kept me hanging on...You just keep checking in, verbalizing your fears, and pretty soon the fear disapates...

    p
  • amy_h414
    amy_h414 Member Posts: 98
    #23
    welcome
    Don't be alarmed if they can't find the primary. My husband had oropharyngeal SCC, diagnosed earlier this year when he had an enlarged lymph node in his neck. The PET scan indicated base of tongue for the primary, but when the ENT went in to try to get a biopsy, he could not find a tumor. This scared the crap out of me! How do you treat it if you can't find it??!?

    Well, they did treat it and now the cancer's gone. Two lymph nodes in his neck and his throat were zapped with 35 rads, he also got 6 sessions of chemo. He was 38 years old when this all started.

    The treatment is brutal, no question, but he got through it and is fine now. It's almost like it never happened. Hang in there, you'll get through this.
  • luvofmylif
    luvofmylif Member Posts: 344
    #24
    amy_h414 said:

    welcome
    Don't be alarmed if they can't find the primary. My husband had oropharyngeal SCC, diagnosed earlier this year when he had an enlarged lymph node in his neck. The PET scan indicated base of tongue for the primary, but when the ENT went in to try to get a biopsy, he could not find a tumor. This scared the crap out of me! How do you treat it if you can't find it??!?

    Well, they did treat it and now the cancer's gone. Two lymph nodes in his neck and his throat were zapped with 35 rads, he also got 6 sessions of chemo. He was 38 years old when this all started.

    The treatment is brutal, no question, but he got through it and is fine now. It's almost like it never happened. Hang in there, you'll get through this.

    I felt the same way while
    I felt the same way while waiting for my husbands first surgery and then later waiting for chemo and radiation. But, now we are almost done with radiation and chemo. So, one day at time works. I just have to remind myself of that everyday, especially the last thirty days of radiation. So, your husband will get there in due process.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #25
    Welcome VtGirl
    First and foremost....take a deep breath and know you will get through this...we all have walked in your shoes.

    Like your hubby and you...

    When I first found out and heard those words...STGIII SCC Tonsils and a Lymphnode, HPV+. It was devastating...no history in my family what so ever,.

    Like your hubby, other than a slight irritation in my throat, I was in perfect health...., well other than having cancer, LOL.

    As for the PET and a primary site...for me the primary was the tonsils, lymphnode was secondary.

    Some people never know or find the primary, but their treatment, and recovery are every much as successes as those with known primaries.

    You can get the results from the PET as early as 24 hours, usually it's anywhere from a few days to a week and results are given with a visit with your MD to discuss.

    Anyways, please try to calm down, and get your mindset for the war on cancer.

    We do have a SuperThread that offers tons of very useful info, maybe not as much now for you as in the near future...


    SuperThread

    Again, welcome....

    Thoughts and Prayers,
    John

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