Radiation coming soon

jbrown8813
jbrown8813 Member Posts: 4
in Head and Neck Cancer #1

Hello. I am new to this site. My name is Jess, I am 27, and a week before I turned 26, I was diagnosed with squamous cell carcinoma of the tongue. I underwent my first surgery on May 8th, 2014. I was declared cancer free in September. In December, I began having pain on my tongue again and after the holidays, I went trough the paces with my doctor, he sent me for scans and when everything came back clear, he decided to do a laryngoscopy, during which he found a spot that concerned him, so he biopsied it. The followng week, he informed me that the cancer was back and he was sending me to the University of Alabama - Birmingham. They ended up doing another surgery on June 3, 2015. On my follow up appointment, the surgeon informed me that he was going to take my case to the Tumor Board for further consideration. The board recommended radiation and additional scans to determine baseline. I got the results from the scans today (nothing suspicious, fortunately) and they are setting up an appointment for me at a cancer center. So that is where Im at now. Waiting. I know in my heart I made the right decision to go ahead with radiation, I'm just nervous. I guess that's to be expected. Anyway, thanks for reading. Any info/advice about radiation would be greatly appreciated. I look forward to getting to know some people who know what I'm going through. 

 

Jess

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    welcome

    But I'm a little confused.  Nothing suspicious on the scans?  What do they plan to radiate?

    BTW, my husband and are in Huntsville.

  • avisemi
    avisemi Member Posts: 172
    #3
    Jess,
    welcome to our group!

    Jess,

    welcome to our group! I'm so sorry you need to be here. Cancer sucks. Though You found a great place where to find good info and support.  What did the tumor board say?  

    radiation is not easy. It is quite a hard road. But you can do it just as many here have done. Your age will help. My husband is 38 and the oncologist told us his age would help and we think it did.  

    our doc said that most people start feeling the effects of radiation by week 4. This was exactly the case for Dima.  He did very well the first 3 weeks. Went to work and all. He started feeling bad by the end of the 4rd week.  

    The he most important thing the doc said was for Dima to keep his weight. He said it is harder for the body to heal if he lost too much weight. He ate as much as he could by mouth until he couldn't and started using his feeding tube. 

    Lone thing that helped a lot was to take glutamine daily. It helped prevent mucositis. He did get it eventually but much later than expected. we just bought it on amazon.

    Come here every time you need support. there are always folks willing to cheer others up.  

    Good luck!  You can do this!!!!

  • jbrown8813
    jbrown8813 Member Posts: 4
    #4
    Noellesmom said:

    welcome

    But I'm a little confused.  Nothing suspicious on the scans?  What do they plan to radiate?

    BTW, my husband and are in Huntsville.

    They want to make sure theu

    They want to make sure theu have completely irradiated any cancer cells because it is a recurrence already. The margins from my surgery were close, which made them uncomfortable too. 

  • jbrown8813
    jbrown8813 Member Posts: 4
    #5
    avisemi said:

    Jess,
    welcome to our group!

    Jess,

    welcome to our group! I'm so sorry you need to be here. Cancer sucks. Though You found a great place where to find good info and support.  What did the tumor board say?  

    radiation is not easy. It is quite a hard road. But you can do it just as many here have done. Your age will help. My husband is 38 and the oncologist told us his age would help and we think it did.  

    our doc said that most people start feeling the effects of radiation by week 4. This was exactly the case for Dima.  He did very well the first 3 weeks. Went to work and all. He started feeling bad by the end of the 4rd week.  

    The he most important thing the doc said was for Dima to keep his weight. He said it is harder for the body to heal if he lost too much weight. He ate as much as he could by mouth until he couldn't and started using his feeding tube. 

    Lone thing that helped a lot was to take glutamine daily. It helped prevent mucositis. He did get it eventually but much later than expected. we just bought it on amazon.

    Come here every time you need support. there are always folks willing to cheer others up.  

    Good luck!  You can do this!!!!

    Thank you so much for the

    Thank you so much for the kind words. I am expecting radiation to be a hard road. I just want to get through it so I can move on. I want my life back. I guess that is something every cancer patient says. I am terrified of another recurrence. 

  • donfoo
    donfoo Member Posts: 1,773 Member
    #6
    jbrown8813 said:

    Thank you so much for the

    Thank you so much for the kind words. I am expecting radiation to be a hard road. I just want to get through it so I can move on. I want my life back. I guess that is something every cancer patient says. I am terrified of another recurrence. 

    full battle now

    Hi,

    Given the initial treatment (surgery only) and having a recurrence so soon, this basically indicates there were stray cancer cells that were not excised. This time around they are radiating the kill any cancer cells. The younger the patient the larger long term QOL is considered and surgery causes fewer long term side effects than raditiation. At this point, the priority is to kill all the cancer. 

    It will be a tough treatment but you are you and will bounce back a lot faster than those here twice your age and more.

     

    Don

  • wmc
    wmc Member Posts: 1,804
    #7
    Welcome to the H&N Group

    Welcome and sorry you need to be here. I find it a little concernind that a doctor would say you are cancer free in four months after surgery. Most wait around 5 years. They will say NED which is no evedance of disease. Sorry you have to deal with this again. I only had surgery so I will let the others explainand answer questions. It is a rough road you will be going down. It is said it is the worst treatment to go through, with only louchemiais worse. First you will not be alone in this. Stay hydrated wth water and swallow as often if only small amounts. You can forget how to swallow.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    jess, first i'm so sorry you

    jess, first i'm so sorry you need to be here.  2nd, welcome to the family nobody wants to be part of.  i have to be honest, radiation is rough but you make it through.  have they mentioned chemo?  any way, rest up and put on your battle gear so you are ready when tx starts.  we will be on the sidelines to cheer you on as you take this journey.  come here any time you have questions, concerns, you need to vent, whatever, nothing is off base here.  we have been down this road or have been down it and are done with tx so we truly understand.  i will say a prayer for you and keep you in my thoughts.

    God bless you, Jess.

    dj

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    debbiejeanne said:

    jess, first i'm so sorry you

    jess, first i'm so sorry you need to be here.  2nd, welcome to the family nobody wants to be part of.  i have to be honest, radiation is rough but you make it through.  have they mentioned chemo?  any way, rest up and put on your battle gear so you are ready when tx starts.  we will be on the sidelines to cheer you on as you take this journey.  come here any time you have questions, concerns, you need to vent, whatever, nothing is off base here.  we have been down this road or have been down it and are done with tx so we truly understand.  i will say a prayer for you and keep you in my thoughts.

    God bless you, Jess.

    dj

    Jess

    Sorry you had to find your way here. My cancer was of the jaw 01/2011. I had surgery, rads and chemo (Cisplatin). Had two recurrances, SBRT (pinpoint radiation) twice and another round of chemo taxol/erbitux. No cancer since. Most recent scan this week. I am 64, age is a plus for you. 

    Original IRMT radiation was tough, SBRT wssn't. I was told that apparently there were microscopic cancer cells causig the recurrances and therefore had the taxol/erbitux. Will you be having chemo?

    Nutrition and hydration will be very important. Put on as much weight now as you can. Many of us have endured radiation, you can too.

    God Bless,

    Candi

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #10
    free advice

    Jess,

    Welcome to the H&N forum, where many of us wore a mask.

    The best and easiest advice I received and still subscribe to is drink lots of water and swallow, swallow, swallow. To prove I walk the walk and talk the talk a back of the napkin calculation since before treatment started to 5 minutes ago (3y7m) I’ve consumed 1,522.5 gallons of water.

    Now you will have to excuse me I got take a leak.

    Matt

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    wmc said:

    Welcome to the H&N Group

    Welcome and sorry you need to be here. I find it a little concernind that a doctor would say you are cancer free in four months after surgery. Most wait around 5 years. They will say NED which is no evedance of disease. Sorry you have to deal with this again. I only had surgery so I will let the others explainand answer questions. It is a rough road you will be going down. It is said it is the worst treatment to go through, with only louchemiais worse. First you will not be alone in this. Stay hydrated wth water and swallow as often if only small amounts. You can forget how to swallow.

    Bill

     

     

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