New diagnosis with lots of questions

blanchlj Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
I am 23 years old and was diagnosed with tongue cancer back in August. On Sept. 8, 2006 I had the right half of my tongue removed and a neck disection with 41 lumph nodes removed. None of the lymph nodes came back with cancer. My treatment consists of 6.5 weeks of radiation with three chemo treatments of Cisplatnum at the beginning, middle, and end. I am also getting a shot called Ethial to help save one of my salvatory glands. I am beginning my third week of my radiation treatment now. I am just beginning to have mouth sores and have lost most of my taste. I need some help. I was wondering if there is anyone else who is around my age who has had this diagnosis and would like to know your experience. Or in general, anyone that has had a similar situation to mine. I have been told treatment is very difficult, but I would like to hear first hand what it is like. I also was wondering about how my speech will be after treatment.


  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member

    I encourage you to do a search of the personal web pages on the CSN. By clicking on the "Personal Web Pages" link on the left hand side of this page you can search for others in your age range that may have had a similar experience to yours. If you do find someone you would like to contact, you can do so through the internal CSN email system. For more information on all of the CSN funtions, click on the "Help" link at the top of this page.

    Take care and be well,

    CSN Dana
  • eltonjohn
    eltonjohn Member Posts: 11
    Well, dear, I'm not your age (I'm 49) but I think you will want to know my story - I can help. On 4-25-05 I had the left half of my tongue removed and a flap from my left inner forearm attached. I also had a left side neck dissection, with two lymph nodes coming back positive for cancer. During the operation, the surgeon placed a feeding tube in my stomach and covered my left inner forearm with a skin graft from my left thigh. I went through 36 sessions of radiation treatment (with a one week break). I am 5'7" and my weight went down to 86 pounds. I had mouth sores so bad they made me just cry. Your taste will forever be different and will change from day to day right now. As far as mouth sores go, my oncologist prescribed liquid "Lidocaine/Antacid/Diphen AF" which seemed to help my mouth and the nausea I experienced.

    During radiation, you face will turn red and wrinkle. I hope your teeth are in very good condition as you are unable to have any teeth pulled for quite a while after radiation. Your gums do not heal should you need to pull a tooth during or right after radiation to the mouth.

    I saw a speech therapist and seemed to improve. However, your speech will never be the same.

    If you have any further questions, please do not hesitate to contact me. [email protected]