Acinic Cell Carcinoma of Parotid Gland

kelseyd36
kelseyd36 Member Posts: 1
in Emotional Support #1

I know I may be dramatic right now but I'm scared out of my mind... I was just told that my benign tumor is actually a rare case of Acinic Cell Carcinoma. I'm only 24 and I felt so invincible... I know no one likes the word Cancer but when someone tells you that you have its a whole nother ball game. I have my first appointment coming up when I find out more about it. But dang its not a good feeling. I've never been under the knife before and thats another reason why I'm scared. I guess I'm just looking for some advice or tips on how to handle everything....

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited April 2017 #2
    Hello

    Kelsey, I had to look this cancer up.

    While I don't know a thing about this cancer I was able to find postings on the Rare Cancers site on this board.  I hope you can find answers there but always remember your doctor's office should answer any questions you have.

    I think it is a commonality that it is usually hurry up and wait in the beginning before treatment starts.  That is tough but is usually reality. 

    Be gentle with yourself on this journey. Build a support network for any help you might need.

    Come back and ask specific questions and let us know how you are doing.  

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    #3
    Hi, Kelsey

    Sorry you have need of the CSN forums, but glad you found us here. 

    One thing I've found very helpful is to have a friend or family member who's level-headed and a good listener go to appointments with you. Make a list of questions to ask and bring a small notebook with you to remind you of your questions, write down the answers, and any other notes. 

    This website, under resources, has info on suggested things to ask your doctor. Good reading. More physicians and medical groups are having patient portals online where you can contact your physician with your questions via secure portal-based email, make appointments, and renew prescriptions. Good stuff.

    If you don't see anything that's recent about your type of cancer on the cancer-specific forms here, start a new topic. You may very well connect with others who've walked the same payhway you find yourself on now. 

    Also, regarding not ever having had surgery, that's a really good thing! Your physician's group or health insurance plan may have a case manager or social worker who helps patients through the process, too. Do check that out.

    Oh, and there may very well be people who are going to tell you horror stories, be drama queens, and do otherwise unhelpful things. Practice saying, "I'm sorry, but [whatever it is they're doing] isn't helpful for me right now. What I would appreciate would be for you to [describe behavior]." If you're anything like me, I'm sure even on a good day you'll be able to generate enough drama on your own, so just say "No" to theirs. 

    I have a survival kit of sorts for this: Excellent, high quality tissues for nose blowing and eye blotting, with or without lotion; Caller ID on my phone; The already mentioned notebook in my purse; A spatula for scraping myself (or others) off of the ceiling; Funny books and movies that always make me laugh; A cat box scoop for dealing with the sh*t that comes my way; and Two #2 pencils, sharpened, so I always do well on tests. 

    And, as you've probably figured out, senses of humor and perspective. We aren't dying from cancer, we're living with it (wisdom from one of the guys on the kidney cancer forums). Also, if you think about it, LIFE has a 100% mortality rate, eventually, so when folks start dumping numbers and statistics in your lap you can remind yourself that it's just numbers. 

    All the best - keep us posted - 

    Jerzy

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