Tongue Paralysis Prior to Treatment of NPC diagnosed patient

RichFFrank
RichFFrank Member Posts: 1
edited April 2021 in Head and Neck Cancer #1

Hello, sorry if this is premature as Ay sister who is the cancer patient has yet  to have her PET scan and is not yet on her treatment plan. Also I did my best to do a search of the discussion boards but couldn't find the same issue.

My sister who was diagnosed with lupus about 18 months ago, all of a sudden started having severe headaches as well as slowly started to have worsening paralysis of her tongue, causing speech problems.  Her doctors who performed the biopsy ( they her nasal passage) have diagnosed her with NPC and claimed that the cancerous growth was potentially pushing up upon some nerves that was causing the paralysis. 

Has anyone had tongue Paralysis prior to chemo/radiation? Im very concerned that her treating physicians are barely getting the PET scheduled, it's been about two weeks since the biopsy.  She's scheduled for a second opinion however they are still awaiting the PET results before they can meet with her...  Frustrating as she continues to suffer daily from the headaches, nausea, and can barely eat.. She's only 105 ibs at 5'0ft as it stands. Can't imagine her weight after chemo and radiation :(

 

Any feedback on this, wherever it be the specific issue about the paralysis, or the delays in the PET (my perception) would be greatly appreciated! Just wanted to add that I've read countless threads on here and I'm so inspired and humbled by all those contributing to the forums and sharing their support and advice.  God Bless you all!

 

 

 

Comments

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited April 2021 #2
    Hello Sister,

    Hello Sister,

     

    Oh yes,.... I can relate although its sad.  My Primary tumor was my tongue, the entire tongue ( 6.3 Centimeter tumor. The tumor itself had already paralyzed the tongue, also it invaded my salivary glands, the gingiva, my tonsil, floor of mouth., And I had Perineural invasion.. 

    I had to have surgery First, because it was blocking my swallowing and my Airway. My skin was a grey/ blue color from lack of oxygen and pneumonia/ collapsed lung.

     

    64 pounds. That's no misprint, I went down to 64 pounds ( I am 4'11" ). And I survived 7+ Hour surgery :: Tracheostomy, Subtotal Glossectomy, Mandibullectomy, Tonsillectomy, teeth extractions, salivary gland removal, and creating a Tongue Flap. 

    Unfortunately, I had recurrent tumors that began to come back just 4 months later, even after chemo & radiation.  I cannot eat and have not eaten in over 4 years. I am 100% dependent on my feeding pumo. And today I weigh 71 pounds.

     

    Also today, one of my surgeons biopsied the end of my esophagus at the GE Junction, what he saw " unusual looking" lesions there .  So, awaiting Pathology report. Always fun...

    I have had 6 tumors... And i have 2 sites currently of known Pre Malignancies.

     

    It's amazing and tragic both what we all go yhrough, and just keep living through it.

    I also was born with a Primary ( genetic) Immunodeficiency, which they think is the source of my cancer. That was diagnosed when I was 9 years old.  A new nurse told me today, You have had a very hard life....

    Yeah, but I'm still standing here !

     

    DollbabeCJ

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #3
    Rich,

    I had NPC, but did not experience the tongue issue you refer to.

    I'm glad that it's been identified, and you're getting it addressed. I'm sorry it's taking longer than you want. It's definitely a challenge.

    Her weight is a concern, and I always recommend to people preparing for Cancer treatment to get ALL the calories they can. If she can put on 5-10 pounds before starting, she would be better off. (I do understand this would be very difficult for her.)

    I'm hoping that your Sister has the best possible outcome from this: she's lucky to have you to support her!

    mg

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #4
    As To Her Tongue

    Paralysis I do not remember anyone on here or anywhere else going into treatment with the situation your sister is in. How do the docs feel about it does it create a problem of some sort treatment wise that is. Besides the biopsy did she have any CAT Scans with dye? Usually, when cancer is known or suspected they will order a CAT Scan of the head and neck area. This shows the area and indicates any cancer-looking areas and the size and extent of the cancer. Then that will do a biopsy which has already been done and verified it was cancer. Next The PET scan is definitely needed which is the whole body scan (Eyes to Thighs) to see if the cancer metastasized to other parts of the body or if there is cancer anywhere else. Sometimes things seem to be moving slow and there is a reason for it like conferring among physicians or insurance hoops to go through to get a PET approved. I would say call the doctor's office and find out what is going on and why it is not scheduled yet. You will have to find out what is going on as the time frame for your sister's situation may be in line with her situation. I had some preliminaries to take care of before my treatment like a feeding tube, a port, and I had my CAT and PET and my team was working up the best treatment route to take as per my situation and it was a bit over a month after my original finding/diagnosis by my ENT till I started treatment. If you think the timeline is too slow either you or both of you set up an appointment to see her doc and ask them to explain what is going on with her case and if it still appears to be too slow try to urge them on a bit. If you can go along believe me the extra support and an extra pair of listening ears and a tablet for notes is a great help. I am sure she would appreciate it. Do you know if her case is being reviewed by a tumor board for evaluation of the best course of treatment? Wishing You The Best-Take Care-God Bless-Russ

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