Cancer and radiation 44years ago

. I am a 44year survivor of lymphoepithilioma (cancer in the sinus draining and causing tumors in the lymph nodes on the neck. Because I was so young my doctors decided to try cobalt radiation instead of a radical neck dissection. It was successful and became standard treatment for quite awhile.  

    Find someone to talk to. This is very important.  It was a very lonely time for me  my family wasn't there for me; cancer was a verboten subject in the 60's and 70's because the survival rate is not what it is today, to say the least  There was no one to talk with who had or was experiencing what I was. In fact I have never found someone I could talk to about the after effect of the cobalt.  Is there anyone out there?  

     My lack of saliva is an ongoing problem. The cobalt not only destroyed my salivary glands it also damaged my gums and jaw bones.  I finally lost all my teeth.  Dentists were not aware of the problems so be sure and find a dentist who is knowledgeable about radiation therapy effects on the teeth  

     Swallowing has always been a problem and it has progressed to a major one. Im not 100% sure but I think that because I do not swallow as frequently as others, the muscles in my throat became weak. Now my epiglottis doesn't close so I have a problem with aspiration and now have dysphasia. I am doing exercises on these muscles and we are hopeful they will help. Pray for me that they do because I do not want a PEG tube!  So exercising these muscles might be something for you consider. 

     The whole experience has been daunting to say the least. BUT I'm alive, 65 and have two beautiful daughters and three fantastic grandsons. There's not much more to wish for. Except perhaps to find someone to communicate with about our mutual experiences.  Is anyone like this out there?

Comments

  • BarryChen1010
    BarryChen1010 Member Posts: 27
    Thanks for sharing your story

    Thanks for sharing your story and joining us. 44 years is really a long time and it inspires me a lot! I am just 4 weeks after treatment and waiting for coming scan result and hoping everything is good.

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    ORN, too

    Kepp,

    My bone deterioration from rads started within a year, and I've had some severe side effects that have led to a left jaw replacement and a follow up to that.  I've lost nearly half of my teeth and need to figure out whether to replace them individually or go with two full dentures.

    So, I can relate to much of what you have experienced.

    Thanks for remnding me that life with ORN is far better than the alternative--and I hope to live many more years post-rads--as you have.

    Feel free to PM me to talk.

    Mike

     

  • ratface
    ratface Member Posts: 1,337 Member
    Cobalt

    I remember my Mother going thru colbalt for lymphoma in the 1970's and I'm only ten years younger than you. I know of one other person who has gone thru colbalt radiation for head and neck cancer  and that is a woman in my SPOHNC group and she had it 35 years ago. Sounds very much like you in what she is expereinceing. I'm surprised either one of you is still alive! What horrific radiation by today's standards. What it says to me is that perhaps there is some hope for the rest of us that the radiation we received will be somewhat survivable. The demographic for Cobalt surviviors who are computer comfortable is going to be tough to find. Why not consider grazing around here.  I am grateful you are here giving me some inspiration. There are many folks here with many of the same issues albeit not from Cobalt. It would be an honor to see you hang out with us for awhile. Welcome to the Board.

  • Barbaraek
    Barbaraek Member Posts: 626
    ratface said:

    Cobalt

    I remember my Mother going thru colbalt for lymphoma in the 1970's and I'm only ten years younger than you. I know of one other person who has gone thru colbalt radiation for head and neck cancer  and that is a woman in my SPOHNC group and she had it 35 years ago. Sounds very much like you in what she is expereinceing. I'm surprised either one of you is still alive! What horrific radiation by today's standards. What it says to me is that perhaps there is some hope for the rest of us that the radiation we received will be somewhat survivable. The demographic for Cobalt surviviors who are computer comfortable is going to be tough to find. Why not consider grazing around here.  I am grateful you are here giving me some inspiration. There are many folks here with many of the same issues albeit not from Cobalt. It would be an honor to see you hang out with us for awhile. Welcome to the Board.

    Nicely put...

    it would indeed be an honor to have you here on the board ! Even though you are experiencing side effects, your survival story is so inspirational. We are a nice group to hang out with if I do say so myself..

  • MrsBD
    MrsBD Member Posts: 615 Member
    Thank you for joining and

    Thank you for joining and sharing the wisdom you've gained from experience. It seems in the early years of survival, some people just think of making it to the next scan. It's awesome knowing of someone who has had 44 years of a fulfilling life. I hope you will find answers soon for your current issues.

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

    Welcome to the H&N Group. Thank you for shairing you story with us. With you having cobalt it is even more special to me. My father had lung cancer in '78 and it was very agressive as it showed up on an xray the size of a tennis ball and was not there six months before. Long story short he was given 6 months so they tried colbalt and they were very agressive. They knew there was no surviving this but just wanted to give some time. We were given 6 years because of it and I am very thankful we got the extra years.

    My epiglottis was not working good and I was asperating as well. My tumor was below it and should have had no effect on it. It was in the superglottic and touching my left vocal cord. I only had surgery because I have COPD I had very little choice and having a Laryngectomy was the only choice I had and having a neck dissection on both sides. It worked so I never had radiation or chemo. I do know you can forget how to swallow as I wasn't allowed to swallow anything not even slive for 8 days and I had to learn all over again. I know part was from the surgery as they had to cut me from ear to ear so many muscles were cut. I don't know of any side effects from having colbalt my father had. His were all just from the cancer. Had to stop using salt, sugar and became diabetic, could no longer have any alcohol. The last year or so it was pretty rough. His only thought was his next breath. He could eat ok just with no salt and some other restrictions, there was just no tast. They did say it almost or did burned a hole. The tumor was going into his heart as well. 

    From what I have read and seen on this site the side effects from colbalt are just about the same as other radiation. They can focus it much better now. You are one of the lucky ones as surviving it was not really very good back then, glad you did.

    Bill