Basal Cell Adenocarcinoma - Parotid Gland

blackroze1000
blackroze1000 Member Posts: 50
edited March 2014 in Head and Neck Cancer #1
I survived this rare cancer about a year ago, and I would LOVE to talk to anybody who has/had this or even knows anybody that went through this. I really need some support. I have most of my taste buds back, but my saliva is almost non-existent (I live on Biotene spray, mouthwash, gel, etc.). My biggest problem is still not being able to swallow. I can only eat things with a lot of butter, condiments, etc., and must have a lot of water to swallow it down with. I can barely eat beef, chicken, pork, etc., and forget about breads, cookies, crackers, etc., unless they are smeared thick in butter. I can get some pasta down with tons of sauce, but even that's hard. I just want to swallow again. Is there anyone else going through this whose shoulder I can cry on? I promise you can cry on my shoulder right back! I found the CSN site just recently while looking for answers to my current problem -- breast cancer. Unreal. I feel like I'm a walking target for cancer. Anyway, I put off my PET scan to deal with the breast cancer treatment. Hopefully, I did the right thing. Needless to say, I'm a little overwhelmed right now and just need some feedback. Help!

Elaine in Georgia

Comments

  • monniw
    monniw Member Posts: 6
    #2
    Hey Elaine,
    i didnt have the
    Hey Elaine,

    i didnt have the same type of parotid cancer you did (i had mucoepidermoid carcinoma in my left parotid), but i did undergo radiation to the neck area that caused a lot of the symptoms youre describing. I had a parotidectomy so i'm functioning on one on my right side only. my saliva is thick and i have trouble passing food down my esophagus. i used to have to stand up and do a semi-chicken dance just to get the food all the way down. that or throw it up. it was always embarrassing to go to a restaurant and choke on my food.

    from what i've read, you're doing everything my docs have offered me. i wish i could offer you more other than my sympathies. my saliva and dry mouth have returned to almost normal. i still have trouble swallowing esp when i'm hungry and dont chew well. i also still have thick saliva in the mornings. i wish i had some easy fix it solution for you, but i guess you can always just cry on my shoulder!

    p.s. the loss of taste buds was by far the WORST!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    hey blackroze
    i know we spoke before on the other thread, but you never said whether you had a swallowing study? (i don't think you did, i apologize if i am having a crs moment) maybe you need to have a dialation? i am not sure if i told you, i had one before my cancer and 2 since my cancer. i still need another one. i am getting the nerve up as i am difficult to intubate, and i have some problems with the anesthesia, so it is a bit riskier.

    please feel free to privately email me on this site if you ever need to talk. as i said on the other thread, i can barely eat anything between the mouth pain, lack of a salivary gland, and the stricture in my throat. not to mention no taste buds. i hear ya sister. i am hoping to get rid of my tube someday.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    Elaine, I am 21 wks post trmnts (35 rad) and i still have a lot of trouble swallowing. I still get choked when I eat and I still wash it down with water. I was told this could take 6-9 months to be back to normal. My throat is still very swollen and like you, I have very little spit. I cannot leave my house w/o a bottle of water and I always have a glass of water when I'm home, I'm never w/o it. Like you, I had no idea what to expect until I got on here. Everything I know about my cancer (SSC, vocal cord), I learned from the people hear. I didn't even know what questions to ask until I found this site.
    I'm sorry you are experiencing all this but it will come back (so I'm told) eventually. Just hang in there, and try to remain positive. On the days when you need to vent or give a little pitty party, come here. Others, including me, have had them and you are welcome to also. Having a strong faith in God gets me thru everything!!!
    God Bless,
    Debbie
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    I forgot
    Elaine, I forgot I copied a post from Morgan (SMorgan I think) who was just diagnosed with the same cancer as you, here is the post:

    Hi, i'm new to the site. I'm only 21 and i was diagnosed with acinic cell carcinoma of the parotid salivary gland last month. i am 3 weeks out of surgery (they removed most of it but couldn't get to some that was below my facial nerves) and am waiting to move up to Seattle for neutron radiation.
    I think i'm still in shock, i still have another year of college and have so many goals and my only problem before was which should i do first. now, i don't even know if i'll be able to achieve any. if anyone has any advice that you think would be helpful before i do radiation or anything else, i'd love to hear your input.
    thanks, morgan.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    the name is MorganS
    the above is her correct name and I believe she would love to hear from you as she asked the same thing you did, is anyone familiar with this diagnosis. Good luck and hang in there.
    Deb

Discussion Boards