New here and possibly some type of oral cancer

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Hello,

First, I would like to say that I have read many of your stories and I think you are very couragous.  I admire your strenght and only hope I have half as much as you all do.

 

My story start in mid-March when I started feeling pain on my tongue.  Other than swollen papillas on the right side, I can't see anything else on my tongue.  I does not burn when I eat or drink anything.  Then comes the enlarge right tonsil as well as a few lymphnodes, all on the right side.  I also have intermitent right side ear pain and sore throat.    I also have the right side of my jaw crack when I move it and blocked nose as well as post nasal drip and LPR. I have had a CT scan with contrast that did show inflammation.  I was told that the radiologist was not worried and neither was my GP.

I then had a ENT appointment 2 weeks ago who briefly looked at my tongue and did not seem concern about the papillaes.  He did not have the CT scan on hand then but he does now.  I have to see him again on the 9th of May for a full scope.

I am worried sick and even though I know you are not doctors, I am wondering if the swollen tonsil could cause post nasal drip or if it could be the other way around.

I also feel that waiting another week is soooo long and I know I will have to book another appointement with ENT to get the results.  He has appointments scheduled 3 weeks ahead of time, so that would take me another 3 weeks with a probable cancer growing in me.

When the lymphnodes swell, does it automaticaly mean the cancer has spread or are they just working over time ?

 

Thanks for listening to me.

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hello and welcome

    to this forum.  It is a good one, and I'm sure you'll get responses that will help put your mind at ease a little.  No....swollen lymph nodes do not automatically mean it is cancer.  Most of us went thru a few weeks of antibiotics before any type of biopsy was done....and that's because usually swollen nodes do NOT mean it is cancer, but infection. 

    It is good you're getting this all checked out by an ENT....if for nothing else than a giant relief for you to find out it isn't.....we say around here that it ain't cancer till somebody (in the know) says it is....

    Most of us went for months between noticing a swollen lymph node, to actually getting treatment for cancer.  I started chasing my node with my GP in January, and didn't get my first treatment until almost the end of April....if it does turn out to be cancer, it is slow growing....and waiting around for plans to be laid, and treatment to begin is really one of the hardest parts of this whole thing. 

    p

  • Ladylacy
    Ladylacy Member Posts: 773 Member
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    You

    Sorry you are having trouble.  We have a saying that it ain't cancer until the doctor says so.  I know it is hard to wait but when you had the CT scan and they said inflammation and weren't worried then try not to worry.  When my husband was diagnosed with laryngeal cancer, he had been having some ear pain on and off and a sore throat.  Our primary said sinus and ear infection and gave him some ear drops to use for 5 days and said if not better to see our ENT.  Well our ENT was a wonderful old doctor, who has since passed away.  He said he didn't know what made him scope my husband in the office but he did.  Then sent him for a CT scan with contrast and then a biopsy.  Yes he had laryngeal cancer.  From the time he was diagnosed until treatment started was about 2 months.  It takes time for them to do all the tests and then decide on a course of treatment.  

    Myself, I still have my tonsils at 60 plus years of age and from time to time glands on the side of my neck will swell especially when the pollen is so bad.  I have also ear pain from time to time and especially in the spring and fall.  

    Try not to worry and I know it is hard, but like I said before it ain't cancer until they do a biopsy and say so.  You will worry youself needlessly for now.  Yes my husband survived the laryngeal cancer but now he has a second primary which has spread.  He has elected no further treatment because the only thing is chemo and he prefers quality over quantity and right now he is doing fairly well.  We live our life one day at a time and only the Good Lord knows when our time is up.

    Wishing you the best -- Sharon

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome...

    First, the things you describe do not mean you have cancer... Actually neither will the scan or scope, but a biopsy will.

    At this point, it isn't cancer until you have some tissue biopsy telling the MD's it's cancer.

    I had STGIII Tonsil cancer with mets to a lymphnode, and didn't really have any of your symptoms other than a swollen lymphnode. Swollen lymphnodes indicate they are more than likely doing as the should..intercepting something going on, not necessarily cancer though.

    As for the time, it's not really a long time, it's just long to you because of the situation. The ENT should tell you right when you have your scope if he sees anything of concern, shouldn't need be a follow-up to that scope...

    A scope just consists of running a visual tube through a nostril down to the top of your lungs usually. Turning your head from side to side, saying EEEEE. Maybe some touchy feely stuff going on..., that's about it.

    At this point even though you are concerned..., and more than likely scaring the crap out of yourself researching the internet (more thn likely how you found this site)..., you don't have a diagnosis of cancer. If you are lucky after the next few MD visits you still won't.

    But if luck isn't in your favor that way, it is in you finding this site..., many people here to offer their experiences and knowledge.

    Best,

    John

     

     

  • Threelittlebirds
    Threelittlebirds Member Posts: 39
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    Skiffin16 said:

    Welcome...

    First, the things you describe do not mean you have cancer... Actually neither will the scan or scope, but a biopsy will.

    At this point, it isn't cancer until you have some tissue biopsy telling the MD's it's cancer.

    I had STGIII Tonsil cancer with mets to a lymphnode, and didn't really have any of your symptoms other than a swollen lymphnode. Swollen lymphnodes indicate they are more than likely doing as the should..intercepting something going on, not necessarily cancer though.

    As for the time, it's not really a long time, it's just long to you because of the situation. The ENT should tell you right when you have your scope if he sees anything of concern, shouldn't need be a follow-up to that scope...

    A scope just consists of running a visual tube through a nostril down to the top of your lungs usually. Turning your head from side to side, saying EEEEE. Maybe some touchy feely stuff going on..., that's about it.

    At this point even though you are concerned..., and more than likely scaring the crap out of yourself researching the internet (more thn likely how you found this site)..., you don't have a diagnosis of cancer. If you are lucky after the next few MD visits you still won't.

    But if luck isn't in your favor that way, it is in you finding this site..., many people here to offer their experiences and knowledge.

    Best,

    John

     

     

    Thanks

    Thank you all so much for taking the time to repply to me.

    My mind tends to over think things and I already had a major cancer scare in December 2012 when a shoulder x-ray revealed a bone lesion on my humerous.  After weeks of tests that came back negative and a MRI with contrast that showed it was not a bone lesion, I can't help but think what if they missed something.

    I will remain calm and not surf the net other than this site because I find it is very positive and so much more than just statistics.

    I will keep you posted weither or not I have cancer.

    Again, thank you so much for all your kind words.  

    Chantal

  • Threelittlebirds
    Threelittlebirds Member Posts: 39
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    Ladylacy said:

    You

    Sorry you are having trouble.  We have a saying that it ain't cancer until the doctor says so.  I know it is hard to wait but when you had the CT scan and they said inflammation and weren't worried then try not to worry.  When my husband was diagnosed with laryngeal cancer, he had been having some ear pain on and off and a sore throat.  Our primary said sinus and ear infection and gave him some ear drops to use for 5 days and said if not better to see our ENT.  Well our ENT was a wonderful old doctor, who has since passed away.  He said he didn't know what made him scope my husband in the office but he did.  Then sent him for a CT scan with contrast and then a biopsy.  Yes he had laryngeal cancer.  From the time he was diagnosed until treatment started was about 2 months.  It takes time for them to do all the tests and then decide on a course of treatment.  

    Myself, I still have my tonsils at 60 plus years of age and from time to time glands on the side of my neck will swell especially when the pollen is so bad.  I have also ear pain from time to time and especially in the spring and fall.  

    Try not to worry and I know it is hard, but like I said before it ain't cancer until they do a biopsy and say so.  You will worry youself needlessly for now.  Yes my husband survived the laryngeal cancer but now he has a second primary which has spread.  He has elected no further treatment because the only thing is chemo and he prefers quality over quantity and right now he is doing fairly well.  We live our life one day at a time and only the Good Lord knows when our time is up.

    Wishing you the best -- Sharon

    Sharon

    Sorry to hear about your husband.  I hope he can enjoy a great quality of life.

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
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    One Day at a Time - Sort Of

    The waiting and worry cannot be easily set aside.  I could not but kept thinking if it is not cancer great and if it is let's jump on this and hit it with all they have and get rid of it.  The advantage of neck cancer, if there is any advantage, is a high cure rate. 

    I had two months of yes it is, no its not, etc.  It was not good, but when I got that it is cancer the doctors were ready and jump on it.  So far so good. 

    My only advice, for what it is worth which may not be much, is if it looks like cancer or they are not sure to ask about getting a biopsy.  At first all I got was a fine needle probe which gave a strong indication of cancer and they almost started treatment until a great doctor said I want a biopsy as we are not going to start treatment unless we are sure its cancer.  May not be needed in your case but just throwing that out there. 

    I had swollen lymph nodes most of my life due to sinus infections.  That's what they treated at first as that was the most likley thing and made the most sense. 

  • Billie67
    Billie67 Member Posts: 898
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    One Day at a Time - Sort Of

    The waiting and worry cannot be easily set aside.  I could not but kept thinking if it is not cancer great and if it is let's jump on this and hit it with all they have and get rid of it.  The advantage of neck cancer, if there is any advantage, is a high cure rate. 

    I had two months of yes it is, no its not, etc.  It was not good, but when I got that it is cancer the doctors were ready and jump on it.  So far so good. 

    My only advice, for what it is worth which may not be much, is if it looks like cancer or they are not sure to ask about getting a biopsy.  At first all I got was a fine needle probe which gave a strong indication of cancer and they almost started treatment until a great doctor said I want a biopsy as we are not going to start treatment unless we are sure its cancer.  May not be needed in your case but just throwing that out there. 

    I had swollen lymph nodes most of my life due to sinus infections.  That's what they treated at first as that was the most likley thing and made the most sense. 

    First off...
    Let's talk about your cool screen name! I love it because it reminds me of Bob Marley and I can just hear him singing it now! Not sure if your name is any way at all in reference to that song but now that tune is just stuck in my head :-)
    Now on to the other goodies. I'm going to say this and I know you probably won't be able to do it but, relax. Try very hard to relax! If if if..... it turns out to be cancer, it is not a quick growing as you'd think. Most of us went months from our first appointments with "what's this?" to our actual start of treatment. All that being said, it may not even be anything for you to worry about.
    Our lymph nodes do swell up when they are doing their jobs. Any infections like a cold, sinus infection, tooth infection, even if you have say poked your mouth with a chip or burnt yourself with hot pizza. All those things can make your nodes go crazy.
    It's a good thing you are seeing an ENT because he or she will help you get to the bottom of this. I'm not sure where you live but if you can go to an ENT at a teaching hospital they usually have a videostrobeoscopy machine and it gives them a much clearer view than the typical rigid scope. My regular ENT was always doing the regular nasal rigid scope and could only see that my cords looked "funny" and possibly paralyized. He ended up sending me to USC head and neck unit and the videostrobe showed much much more. Even being able to see more, my new ENT wasn't 100% sure until we did a biopsy. My original ENT was shocked when in my case it turned out to be cancer because he admitted that based on what little he could see with the rigid
    scope, he wouldn't have even felt the need for a biopsy. He said a video strobe is always a better exam, so see if you can request one.
    If after meeting your ENT you still feel like you don't have all of the answers, you can ask us on here for a dr recommendation in your area. You might find that someone on here can refer you to a dr that they love and trust.
    Welcome again and please try and relax :-)
    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    let us hope no cancer

    Threelittlebirds,

    Welcome to the H&N forum.

    I did not think (for sure) I had cancer until my ENT said “you have cancer” and I had a biopsy.

    If your schedule is flexible, call your ENT and tell them you can come in if there are any cancelled appointments.  This method gets me in sometimes within the hour.

    I am hoping you are fine, with no cancer, ok.

    Matt

  • yensid683
    yensid683 Member Posts: 349
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    The glass is half full....

    Attitude is everything, and as so many have said so far, unless the MD says it is cancer after the right tests, it is not cancer

    DON'T BORROW TROUBLE if you can avoid it, worry is normal, after all, the worst feeling I ever have had in my entire life was when my ENT told me that I had a tumor on the base of my tongue and it was likely malignant.  He never said it was cancer until after the pathology report came back positive for squamous cell carcinoma.  So hang in there.

    Lymph nodes react to lots of stuff, it's there job to, so there may be hundreds of reasons why your's popped up, and likely none of them involved the nasty C.

    I was diagnosed with base of tongue, the primary tumor was 3 cm, and the largest of the lymph nodes was 6 cm, so they put me at stage IVa, and I had no symptoms while it was growing.  I asked my medical oncologist how long it may have been growing before it became symptomatic, and she said that it could have been as long as two years, my ENT said that on a microscopic level, it could have been as long as 5 years!  So sllloooooowwwww growing it is.

    Keep a positive outlook, it is so much easier than worrying.

     

  • Threelittlebirds
    Threelittlebirds Member Posts: 39
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    Bob Marley

    Thank you all for your kind replies and words of advice.  I am trying real hard not to worry and some days are good and some not so good.

    The not knowing is hard, not that I want it to be cancer, but once we know, we can make a plan and tackle it.  I am also away that swollen lymphnodes and tonsil could be something else but it has been a month and a half....that is a long time.  I am also getting some night sweats and I hope they are realated to perimenopause ... just odd that it all came together at the same time.

    Billie, my nick name is after Bob Marley's song.  I thought it would be fitting since it's such a postive one.

    Chantal

  • Threelittlebirds
    Threelittlebirds Member Posts: 39
    Options
    Billie67 said:

    First off...
    Let's talk about your cool screen name! I love it because it reminds me of Bob Marley and I can just hear him singing it now! Not sure if your name is any way at all in reference to that song but now that tune is just stuck in my head :-)
    Now on to the other goodies. I'm going to say this and I know you probably won't be able to do it but, relax. Try very hard to relax! If if if..... it turns out to be cancer, it is not a quick growing as you'd think. Most of us went months from our first appointments with "what's this?" to our actual start of treatment. All that being said, it may not even be anything for you to worry about.
    Our lymph nodes do swell up when they are doing their jobs. Any infections like a cold, sinus infection, tooth infection, even if you have say poked your mouth with a chip or burnt yourself with hot pizza. All those things can make your nodes go crazy.
    It's a good thing you are seeing an ENT because he or she will help you get to the bottom of this. I'm not sure where you live but if you can go to an ENT at a teaching hospital they usually have a videostrobeoscopy machine and it gives them a much clearer view than the typical rigid scope. My regular ENT was always doing the regular nasal rigid scope and could only see that my cords looked "funny" and possibly paralyized. He ended up sending me to USC head and neck unit and the videostrobe showed much much more. Even being able to see more, my new ENT wasn't 100% sure until we did a biopsy. My original ENT was shocked when in my case it turned out to be cancer because he admitted that based on what little he could see with the rigid
    scope, he wouldn't have even felt the need for a biopsy. He said a video strobe is always a better exam, so see if you can request one.
    If after meeting your ENT you still feel like you don't have all of the answers, you can ask us on here for a dr recommendation in your area. You might find that someone on here can refer you to a dr that they love and trust.
    Welcome again and please try and relax :-)
    Billie

    Ottawa

    Hi Billie,

    I am in Ottawa, Canada.  My ENT does work with a hospital team and I can as my GP for another referal if the ENT is unsure and wants to wait and see.

  • jim and i
    jim and i Member Posts: 1,788 Member
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    Bob Marley

    Thank you all for your kind replies and words of advice.  I am trying real hard not to worry and some days are good and some not so good.

    The not knowing is hard, not that I want it to be cancer, but once we know, we can make a plan and tackle it.  I am also away that swollen lymphnodes and tonsil could be something else but it has been a month and a half....that is a long time.  I am also getting some night sweats and I hope they are realated to perimenopause ... just odd that it all came together at the same time.

    Billie, my nick name is after Bob Marley's song.  I thought it would be fitting since it's such a postive one.

    Chantal

    Chantel, I love Bob Marley,

    Chantel, I love Bob Marley, especially One Love. As for your symptoms they are the same as my husbands. His ear pain progressively got worse. He went to 3 ENTs who missed it and yreated him for nerve pain. None ordered a CT. Finally we went to the PC and he ordered a CT. Once we got the results he was in treatment for stage 4 tongue cancer in 2 weeks. So be proactive in getting answers. It took 3 years to get the right diagnosis, partly because the ENTs didn't order the scan and partly my husbands stubborness about going to the PC.  I pray you are able to get answers quickly. If it is stage four they will move fast for sure.

    Keeping you in prayer and remember, it isn't cancer until the experts say so.

    Debbie

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Bob Marley

    Thank you all for your kind replies and words of advice.  I am trying real hard not to worry and some days are good and some not so good.

    The not knowing is hard, not that I want it to be cancer, but once we know, we can make a plan and tackle it.  I am also away that swollen lymphnodes and tonsil could be something else but it has been a month and a half....that is a long time.  I am also getting some night sweats and I hope they are realated to perimenopause ... just odd that it all came together at the same time.

    Billie, my nick name is after Bob Marley's song.  I thought it would be fitting since it's such a postive one.

    Chantal

    Stephen Marley Also...

    Another favorite of mine also......

    JG

  • MICH4EL
    MICH4EL Member Posts: 73
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    Your situation

    I will echo everyone else's comments to wait and see.  It is very hard at the beginning when you don't know what you are dealing with.  The doctors need to do their tests and scans to understand your condition and decide what treatment is needed, if any.  If you do have cancer and need treatment, this list will be a great source of information and support.  Don't hesitate to ask questions.

    Michael