Salivary Gland Cancer

Posted , 5 users are following.

Hello- I am new to this group. Came across it while doing some searching of parotid and salivary gland issues. In October 2015 I was diagnosed with Acinic Cell Carcinoma, aka Salivary Gland Cancer. It started with a lump under my right ear. Soar throat....scratchy voice (like I was getting a cold but never did). I had surgery, to remove the tumor. I had several teeth removed-and then 3 months of radiation. I just passed my one year mark of that being done. I go in Monday for my every 6 month PET scan, and feeling nervous. I just started having pain on the opposite side now. I dont feel a lump but the pain when I eat is really bothersome. Anyway, I thought maybe if I could answer any questions I'd be happy too.

Stacie

1 like, 19 replies

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  • Posted

    What happened to the other side, this is just what I am experiencing
    • Posted

      Hi Ailine-

      So nothing hs really happened on the otherside. The pain comes and goes but I had a PET scan and nothing showed up (ere anyway) they did find a lymph under my clavicle that I am going to get biopsy on Monday. Were you diagnosed with Salivary Gland Cancer?

    • Posted

      Asinic cell carcinova rare! But similar to salivary gland, had it out ,left my eye not closing, mouth up one side down the other, mouth dry, starting 6 weeks radiotherapy soon,hoping it will clear up any cells left, had mask made, and scan done
    • Posted

      Thats what I have- Found it Oct 2015 did 4 months radiation-sucked
    • Posted

      Did your eye not close and your mouth droop??? How long did it last June is 8 weeks in now doing exercises , did u have radiotherapy??? We're the side effects grim?? 

    • Posted

      I'm not sure how big or where your tumor was located. I was stage 2-my surgeon was amazing. I ended up with numbness (my ear and parts of my face) but nothing to bad. You can see it a little when I smile sometimes, but no drooping of the eye. Radiation was the worst.....prepare yourself. It starts off pretty tame, no major side effects but as time goes on....you will wake up one day and not be able to taste anything....its the weirdest (and worse) feeling. By the end of my treatment my face neck and throat were totally burned, I could hardly swallow. I took the last 2 weeks of radiation off work cause mentally I was just done. Hang in there- you will get through it, your taste will eventually come back. Good luck to you, and if you want keep in touch, I'm happy to answer questions or be a support for you.

    • Posted

      4 th week starting tomorrow radiotherapy, lost taste did yours come back?? Have u lost hearing in 1 ear??? My ear is begining to feel strange, did u loose hair?? How did u handle it? Any tips on eating everything tastes like salt, did hearing come back?? Are u on any ongoing treatment? They said my cancer gone but 6 weeks radiotherapy to mop up!! Do u think if I stop after 4 it would do anything? Thankyou  for your help, 
    • Posted

      Hi Ailine- yes about 4 weeks in is when I lost my taste, it seemed to happen overnight, and it was really difficult to deal with. I don't think people realize how hard it is to be hungry, and not taste anything. I lived on chicken noodle soup, it was the only thing that I could manage, for quite a few months. Your taste will come back after radiation. It took about 6 months for mine-and even though it has come back, some things don't taste the same....but for me that is ok. I lost my hair, and unfortunatley the worst is yet to come. The last week or two of radiation is the worst. I have pictures....I photo journaled my whole treatment from surgery to radiation. Now I just have to do my every 3 month dental checks and every 6 month PET scans and so far so good. Fingers crossed. Hang in there....you will get through it!! sad

    • Posted

      Just finished radiotherapy 1st day off it's heaven!!! Now scans and follow ups,what was your scans results??? Do u need any more treatment?? Finding something to eat is a problem, got the fortisip drinks can eat wearability , any tips !! Thanks

    • Posted

      Congrats! That was the worst part for me-the last week and the two weeks after healing. So I go back every 6 months for PET scan, and every 3 months dental visits. My scan results have been good so far-my last scan they did see something in the thyroid area which I ended up having biopsied (not fun) but it came back clean. They do want me to follow up next month on that. For the most part the next 5 years they will keep a close eye on you. I have heard that once you have clean scans for 5 years you are considered "cancer free". As far as the eating....you just gotta find something you can tolerate well enough. For me it was chicken noodle soup....and for some reason I ate a lot of pistachios, with shells. I think because it kept my mouth busy. Good luck through your healing process....and congrats again! Take care!

    • Posted

      All radiotherapy done 3 months ok now got possible mastoid problem have u experienced this
    • Posted

      Pain below ear of operation slight swelling in neck area other side pain inmain vein at back of neck , the doc says ultra scan shows poss echo mass mastoid !! I do not know what it means ! MRI in next 2 weeks have. U any idea what it is! 
  • Posted

    Hello, I have had a nickel to quarter-sized lump under my right ear for several months, and have developed hard pea-sized lymph nodes in other areas. My GP ordered a new ultrasound but I have not yet gone in for the US. Do you mind if I ask what age group you are in and how large/how long you had your lump before having it checked out? I'm 28 and haven't experienced pain, but have had some swelling, fatigue and difficulty swallowing foods/throat irritation. Thank you!

    • Posted

      So I was diagnosed in Oct 2015 I was in my late 40's. I can't remember when exactly I found my lump, but I know I ignored it for awhile. But I remember having a sore throat (that I thought was allergies or the air conditioner that blows on me every night when I sleep). When I noticed the lump getting bigger I got concerned, and when I ate something sour one day it hurt really bad and the whole right side of my face swelled up. My GP said it was probably salivary gland stones, and once they pass everything should be fine. I highly recommend finding a Ear nose throat specialist, I thankfully just decided to do that myself....he told me that a tumor in your salivary or parotid gland will need to come out regardless of whether it's cancer or not. So I never even got a biopsy before I just scheduled the surgery and it turned out malignant. Now in saying that- this is a rare form of cancer, and 95% of all tumors are not cancerous in that area (I don't know if that is exact %) but you get my meaning. The lump itself was not painful, but I did have all the other symptoms that you did. Good luck in your search, and if you feel so inclined to follow up and let me know how it goes. I wish you the best, if you have any other questions feel free to ask-Stacie

    • Posted

      I had a small pea size lump under right ear went next day to docs it turned out to be cancer had op had radiotherapy just getting over the radiotherapy not nice but get it out asap.  Karen

       

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