New Kid on the Block

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plangdon
plangdon Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
Hello everyone. I've been waiting since April, and I've finally been diagnosed with tongue, mouth, and salivary gland cancer. It started with a negative CT Scan done by the VA, to basically my VA doctor telling me not to worry about it. However, I followed up with my MD and finally referred to an ENT. He ended up doing two biopsies, and missed the cancer on the back of my tongue. He finally referred me to Boston Eye & Ear Infirmary, thus, more biopsies. He decided no surgery at this time, and to treat with radiation & chemo. So I'm meeting with the Radiologist dr in Concord, NH, on Tuesday. I have a lot of questions, based on what I've read in this forum.

I have read, and reread just about every posting on the H&N discussion board. I have to say, you all are amazing! This is exactly the information I've been looking for. Lots of great suggestions, and, most of all, support.

My only question is: has anyone had to deal with tongue cancer (my primary)? I teach 5th Grade, and my greatest fear is not being able to speak clearly, or at all. My doctor is optimistic, however, there's always that fear of having part of my tongue removed.

Again, thanks to ALL of the great people who have provided support. I look forward to the dialog over the next several months.

Patrick

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome Aboard
    Hi Patrick,

    Welcome aboard, like you have mentioned there is a wealth of information on here, and the people are great.

    I'm sure someone will chime in with their own experience and knowlege soon.

    Best,
    John
  • Lena Rose
    Lena Rose Member Posts: 73
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    Sorry you had to find
    Sorry you had to find yourself here, but welcome Patrick. My husband was treated for SCC BOT . He is now 3 months post treatment (7 weeks of chemo/rads). He also decided on no surgery at this time, his oncologist at Dana Farber said it was something that could be done later if treatment wasn't successful. My husband's voice is fine-he can speak clearly, although it's slightly weaker. He did stop working in May and is still not back; he is hoping to return in October.

    Sending you lots of strength as you start your journey down this road.
  • uvm1978
    uvm1978 Member Posts: 33
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    Welcome to the group
    Hi Patrick. Welcome to the group and sorry you are one of us. I just had a neck dissection at MA Eye and Ear 3 weeks ago. If you ever want a second opinion, my surgeon there is phenomenal. His name is James Rocco, this is the link to his contact info:

    http://www.masseyeandear.org/find-a-physician/details?physician_id=941268&return_url=/search/search?lastname=&firstname=&specialty%5fid=

    His treatment plan was more aggressive than the surgeon closer to where I live and I opted to travel to Boston for the surgery. I am pleased with the outcome and getting ready to start radiation in a few weeks. I can't address your question about the tongue primary because my primary was skin cancer on the forehead, but I'm sure someone else here can. Good luck to you. Deb
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Patrick
    I too would like to welcome you to our CSN faimily
  • RushFan
    RushFan Member Posts: 224
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    Welcome
    Hi Patrick,
    Sorry you find yourself here, glad you are now part of the group...great people are here with good advise and better support.

    I'm a little over four months post treatment, seven weeks chemo/rads. Had surgery before to remove the lymphnode that started the process. I have unknown primary.
    My voice is rough, but strong. No more singing for me and that's probably just as well.

    All the best to you during treatment etc. BTW...my fifth grade teacher was the best!
    Chuck.
  • kimmygarland
    kimmygarland Member Posts: 312
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    RushFan said:

    Welcome
    Hi Patrick,
    Sorry you find yourself here, glad you are now part of the group...great people are here with good advise and better support.

    I'm a little over four months post treatment, seven weeks chemo/rads. Had surgery before to remove the lymphnode that started the process. I have unknown primary.
    My voice is rough, but strong. No more singing for me and that's probably just as well.

    All the best to you during treatment etc. BTW...my fifth grade teacher was the best!
    Chuck.

    Welcome
    Welcome - even though you may not want to be here, it's a great place for support. Wonderful people with loads of experience and caring.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    welcome
    Patrick,

    My husband has hypopharyngeal and base of tongue cancer: radiation and chemo are complete. Jim's voice is fine - was a bit raspy but is back to his beautiful deep bass voice, although he hasn't been singing yet!

    You will do well -just do as your doctors say.

    Best wishes.
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    Welcome
    Wanted to welcome you. My tumor was on a vocal cord; so I don't have any specific advice to BOT. But someone will soon post the advice you need. Rick.
  • Pam M
    Pam M Member Posts: 2,196
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    Hail and Well Met
    Patrick,
    As always - glad you found us - sorry you had reason to look.

    I had base of tongue cancer (remission now - finished treatments mid March). There were times during treatment when my voice was weak (no projection), and there were times when it was a little hard to understand me (I thought I sounded like a deaf person speaking). I had induction chemo and chemo radiation - no surgery. I think my biggest speech impediments were caused by mouth sores. A couple weeks after treatment, my speech was consistenly understandable, and approaching "normal". At about four and a half months out, I noticed that I lost some ground on speaking - I can still be understood, but I can feel I have some issues forming sounds sometimes - I think I'm the only one who notices - it doesn't sound funny, it feels funny. I'm five and a half months out now, and am almost always clear, but there are times I have the "puberty squeak" when I talk. I can sing some things now, but not like before. Whistling has fared even worse than singing. I continue to improve, though. Like most, my voice is now weakest when I get up in the morning. My voice suffers when I let my mouth dry out (sometimes have nearly no voice until I drink, then it's fine). I do know that some people go through days of not being able to speak - I could, it's just that there were some days that the pain made me avoid speaking when I didnt have to, and it was hard to understand me.

    So, if you're like the majority, your kids won't get much of a break from you lecturing. Hope that's the case. Do well
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
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    BOT here
    Hi Patrick and welcome. Sorry you've had to join us, but yes there are some truly great folks here. I was diagnosed with SCC BOT stage 4. No surgery here, instead had 35 rads and 3 chemo/cistplatin. For several weeks at the end of treatment and the 1st week or 2 post treatment, speaking was more difficult for me. Kind of like trying to talk when you have a really bad sore throat, raspy and practically impossible to speak loudly. After about 1 week post treatment, my voice started to improve. I am 6 weeks out now and my voice is much, much stronger. Cheers

    Jimbo
  • pascotty
    pascotty Member Posts: 174 Member
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    Welcome
    Welcome Patrick and sorry you had to join this ever growing group. You will get great help and advice here. I read it everyday and it lifts me. I had tonsil c scc and 1 lymph node involvement. Had cisplatin chemo and 34 rads. At the time I thought it was the end of the world. But now five months post treatment it's hard to believe that it's all been and gone. Not a walk in the park. But definately doable. I send you love strength and wish you well xxxx
  • KristynRuth86
    KristynRuth86 Member Posts: 140
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    pascotty said:

    Welcome
    Welcome Patrick and sorry you had to join this ever growing group. You will get great help and advice here. I read it everyday and it lifts me. I had tonsil c scc and 1 lymph node involvement. Had cisplatin chemo and 34 rads. At the time I thought it was the end of the world. But now five months post treatment it's hard to believe that it's all been and gone. Not a walk in the park. But definately doable. I send you love strength and wish you well xxxx

    Hello
    As everyone has stated, sorry you found youself here. I'm somewhat new myself, I just started Chemo and radiation this past Thursday for SCC unknown primary. If you ever need a newbie buddy to chit chat with I'm here!
  • plangdon
    plangdon Member Posts: 7
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    Thanks
    Thanks to everyone who has responded. When I first found out last Tuesday that I had all this cancer I felt there's no way to survive it. However, I'm a lot more optimistic now, thanks to you'all.
    Pat
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    Welcome
    Welcome - even though you may not want to be here, it's a great place for support. Wonderful people with loads of experience and caring.

    How's Kimmy?
    How are YOU, Kimmy?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    plangdon said:

    Thanks
    Thanks to everyone who has responded. When I first found out last Tuesday that I had all this cancer I felt there's no way to survive it. However, I'm a lot more optimistic now, thanks to you'all.
    Pat

    You'll Make It
    When I first found out I had cancer it was on a Friday of a long week-end January 2, 2009 and I had taken a vacation day....I was worried I wasn't going to make it through the week-end.

    I had this concept of old frail, discolored, fuzzy headed patients on their last legs. When I went to the chemo center, there were people (patients) there doing work on their cell phones and lap tops, multi-tasking...it blew me away. Sitting here and thinking back, I don't think I ever thought of myself as a patient, LOL.

    One thing to get a grasp on right away is having a positive attitude, and keeping it. Get rid of doubt (as much as you can), it's a struggle at times. Surround yourself with positive people...Faith, Family and Friends.

    When I was going through it all, and someone wanted to share their stories of relatives and friends. I'd tell them up front that if it didn't work out, or end well, that I'd rather not hear it right now, but sometime down the road.

    It's all very doable, not easy, but doable....

    We all have either gone through it, or are going through it, so will you.

    You definitely have an edge on me...somehow I had already ended my treatment by a few months before I found this site.

    Best,
    John
  • Kimba1505
    Kimba1505 Member Posts: 557
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    plangdon said:

    Thanks
    Thanks to everyone who has responded. When I first found out last Tuesday that I had all this cancer I felt there's no way to survive it. However, I'm a lot more optimistic now, thanks to you'all.
    Pat

    BOT
    You know you have been on the Head and Neck Cancer Boards a lot when you are watching a Phillies game and you see BOT and think Base Of Tongue instead of Bottom Of The (5th).
    I am sorry you find yourself here, but you will find great answers, wonderful support and amazing care. Sometimes you will cry and sometimes you will laugh out loud; but regardless, you are with a community of people who know what you face.
    My partner, Mark was SCC left tonsil (sugery, radiation, chemo). He is 2 months post treatment tomorrow and recoverying very well.
    Stay in touch, allow us to join you on your journey.
    Kim
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Part of Tongue removed
    Patrick,

    I hope I can answer some of your questions about the Base of Tongue as the primary. That was what I had. I had, and not to upset you, all of this done. Trach, Peg Tube, Radical neck disection with 3 drain tubes and over 1/3 of my tongue removed. After healing up from the surgery and feeding myself with cans of nutrition, I then went for 30 radiation treatments. I was able to eat soft foods for several weeks during the radiation, then in the later weeks my throat was pretty sore, so I leaned on the Peg Tube once again. Chemo was going to be my safety net in case of reoccurance.

    I was able to speak the next day after surgery. It was louder then a whisper when the Surgeon asked me how I was doing. I covered my trach and said I was doing good. He said he didn't want me to talk yet and was glad that I could, but only wanted a thumbs up from me on the first day.

    My voice returned before the radiation, once we start the radiation, we get burnt on the outside as well as the inside. So, by the end of radiation, my voice was only a whisper. It slowly does come back, with some people it is faster and others, slower. An important thing to do is sip plenty of water and keep your mouth moist as it will also help keep you vocal cords moist.

    My Best to You and Everyone Here
  • plangdon
    plangdon Member Posts: 7
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    MarineE5 said:

    Part of Tongue removed
    Patrick,

    I hope I can answer some of your questions about the Base of Tongue as the primary. That was what I had. I had, and not to upset you, all of this done. Trach, Peg Tube, Radical neck disection with 3 drain tubes and over 1/3 of my tongue removed. After healing up from the surgery and feeding myself with cans of nutrition, I then went for 30 radiation treatments. I was able to eat soft foods for several weeks during the radiation, then in the later weeks my throat was pretty sore, so I leaned on the Peg Tube once again. Chemo was going to be my safety net in case of reoccurance.

    I was able to speak the next day after surgery. It was louder then a whisper when the Surgeon asked me how I was doing. I covered my trach and said I was doing good. He said he didn't want me to talk yet and was glad that I could, but only wanted a thumbs up from me on the first day.

    My voice returned before the radiation, once we start the radiation, we get burnt on the outside as well as the inside. So, by the end of radiation, my voice was only a whisper. It slowly does come back, with some people it is faster and others, slower. An important thing to do is sip plenty of water and keep your mouth moist as it will also help keep you vocal cords moist.

    My Best to You and Everyone Here

    Thanks Marine
    How normal is your speech with 1/3 of your tongue removed? Did they transplant/rebuild your tongue? This is my greatest fear.
    Pat (30 years Air Force)