I Think I Have Tongue Cancer.

2

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    I think you should wait

    Gavin,

     

    Welcome aboard to the H&N forum, sorry you are hear, but be happy you don’t officially qualify  (that next step is a doozy). 

     

    Sleep tight

     

    Matt

  • GavinP
    GavinP Member Posts: 118
    CivilMatt said:

    I think you should wait

    Gavin,

     

    Welcome aboard to the H&N forum, sorry you are hear, but be happy you don’t officially qualify  (that next step is a doozy). 

     

    Sleep tight

     

    Matt

    Of for biopsy in a moment

    Had a good nights sleep (over 6 hours - The best I've had in days) and off for the biopsy in a moment.

    Will I be in much pain when the anesthetic wears off?

  • GavinP
    GavinP Member Posts: 118
    GavinP said:

    Of for biopsy in a moment

    Had a good nights sleep (over 6 hours - The best I've had in days) and off for the biopsy in a moment.

    Will I be in much pain when the anesthetic wears off?

    Biopsy Done

    So the biopsy has been done. Surprised how much they've taken.

    90% of the original lesion is gone and all of the newer, smaller lesion has been taken away also.

    I asked the doctor directly whether it looked like it was anything to worry about and he said he thought it looked like "rubbing" of my tongue against my teeth (which is what I've always thought it was because the lesion shape and size is a direct match for my teeth)

    The doctor also said I would get a letter in a couple of weeks with an appointment to review the biopsy findings in six weeks. When I said presumably I would be called in much quicker than that if there was anything sinister, he was pretty adamant it would be an appointment in six weeks.

    So far so good. Feeling a lot calmer now its done and out the way and the doctor didn't seem overly concerned (though I guess they are told not to say much)

    So now its a matter of waiting it out. I assume if I can get to Friday without being called back, I should be OK?

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    GavinP said:

    Biopsy Done

    So the biopsy has been done. Surprised how much they've taken.

    90% of the original lesion is gone and all of the newer, smaller lesion has been taken away also.

    I asked the doctor directly whether it looked like it was anything to worry about and he said he thought it looked like "rubbing" of my tongue against my teeth (which is what I've always thought it was because the lesion shape and size is a direct match for my teeth)

    The doctor also said I would get a letter in a couple of weeks with an appointment to review the biopsy findings in six weeks. When I said presumably I would be called in much quicker than that if there was anything sinister, he was pretty adamant it would be an appointment in six weeks.

    So far so good. Feeling a lot calmer now its done and out the way and the doctor didn't seem overly concerned (though I guess they are told not to say much)

    So now its a matter of waiting it out. I assume if I can get to Friday without being called back, I should be OK?

    Hiding behind the system

    Could have guessed you were in the UK from this response.  He will have the answer, just doesn't want to be bothered.  Glad you did well.  Here's to a favorable report.

     

    Pat

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    GavinP said:

    Biopsy Done

    So the biopsy has been done. Surprised how much they've taken.

    90% of the original lesion is gone and all of the newer, smaller lesion has been taken away also.

    I asked the doctor directly whether it looked like it was anything to worry about and he said he thought it looked like "rubbing" of my tongue against my teeth (which is what I've always thought it was because the lesion shape and size is a direct match for my teeth)

    The doctor also said I would get a letter in a couple of weeks with an appointment to review the biopsy findings in six weeks. When I said presumably I would be called in much quicker than that if there was anything sinister, he was pretty adamant it would be an appointment in six weeks.

    So far so good. Feeling a lot calmer now its done and out the way and the doctor didn't seem overly concerned (though I guess they are told not to say much)

    So now its a matter of waiting it out. I assume if I can get to Friday without being called back, I should be OK?

    From the sound of it....

    Gavin,

    When I went to my ENT, I asked him to be totally up front, don't pull any punches. He examined me, looked me in the eye and said it was cancer. He didn't know what type but he had seen enough of it to know, The fine needle biopsy came back positive for Squamous Cell Carcinoma within a week. From what you're relaying in your post, your doctor seems to agree with your assessment. 

    I know it's difficult to relax when faced with the chance of having cancer. Believe me, I was on a roller coaster ride for several weeks between all the tests and appointments. I read WAY too much and scared the bejeebers out of myself. I can't speak for your doctor but I would have to assume he would le you know if he was overly concerned. 

    Good luck and keep us informed as to the results. Here's to getting a negative result and peace of mind :)

    "T"

     

  • NJShore
    NJShore Member Posts: 429 Member
    GavinP said:

    Biopsy Done

    So the biopsy has been done. Surprised how much they've taken.

    90% of the original lesion is gone and all of the newer, smaller lesion has been taken away also.

    I asked the doctor directly whether it looked like it was anything to worry about and he said he thought it looked like "rubbing" of my tongue against my teeth (which is what I've always thought it was because the lesion shape and size is a direct match for my teeth)

    The doctor also said I would get a letter in a couple of weeks with an appointment to review the biopsy findings in six weeks. When I said presumably I would be called in much quicker than that if there was anything sinister, he was pretty adamant it would be an appointment in six weeks.

    So far so good. Feeling a lot calmer now its done and out the way and the doctor didn't seem overly concerned (though I guess they are told not to say much)

    So now its a matter of waiting it out. I assume if I can get to Friday without being called back, I should be OK?

    A little waiting isn't bad

    Gavin,

    a little waiting isn't bad, annoying but not bad. Glad to hear the doctor wasn't too excited about the biopsies, I imagine they would have a different response if they really thought it was too serious. 

    And with most here, their cancers came with neck involvement before they had a clue, so hopefully that's just another positive sign for you.

    glad to hear you had a not so bad day!

    Keep us posted and hope your worries are just that.

    Kari

  • GavinP
    GavinP Member Posts: 118
    NJShore said:

    A little waiting isn't bad

    Gavin,

    a little waiting isn't bad, annoying but not bad. Glad to hear the doctor wasn't too excited about the biopsies, I imagine they would have a different response if they really thought it was too serious. 

    And with most here, their cancers came with neck involvement before they had a clue, so hopefully that's just another positive sign for you.

    glad to hear you had a not so bad day!

    Keep us posted and hope your worries are just that.

    Kari

    Some questions after biopsy

    Hi all,

    Just want to ask a few questions about my biopsy after effects?

    I'm noticeing that today I'm feeling terrible. Very shaky, light headed, rapid pulse, shivery etc... My tongue has gone a bright shade of yellow. Could these be after effects of the biopsy?

    Also, I'm feeling as though I'm not swollowing properly cause I can't chew my food properly. Again, is this something thats common after a tongue biopsy? My biopsy was on the right lateral side so every time I try to munch up my food, the biopsy site is rubbing against my tongue.

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    GavinP said:

    Some questions after biopsy

    Hi all,

    Just want to ask a few questions about my biopsy after effects?

    I'm noticeing that today I'm feeling terrible. Very shaky, light headed, rapid pulse, shivery etc... My tongue has gone a bright shade of yellow. Could these be after effects of the biopsy?

    Also, I'm feeling as though I'm not swollowing properly cause I can't chew my food properly. Again, is this something thats common after a tongue biopsy? My biopsy was on the right lateral side so every time I try to munch up my food, the biopsy site is rubbing against my tongue.

    Hang in there Gavin...

    I don't know the answer to your post prvious to my response ...but I will say I would "throw the yellow flag" on six weeks!!!! :)  I realize you are in the UK, but seriously.  Give them a polite call this coming Monday and tell them six weeks will take 10 years off your life :) and just flat out ask for an answer quickly.  Be nice of course, you get more with sugar than salt.

    Best to you Gavin...

     

    Tim

  • GavinP
    GavinP Member Posts: 118
    Tim6003 said:

    Hang in there Gavin...

    I don't know the answer to your post prvious to my response ...but I will say I would "throw the yellow flag" on six weeks!!!! :)  I realize you are in the UK, but seriously.  Give them a polite call this coming Monday and tell them six weeks will take 10 years off your life :) and just flat out ask for an answer quickly.  Be nice of course, you get more with sugar than salt.

    Best to you Gavin...

     

    Tim

    Hi Tim

    Hi Tim,

    I think the six weeks thing applies to whether the biopsy comes back with a routine result (harmless white patches caused by friction with my teeth, for example)

    Should be biopsy come back with cancer, I just can't believe they wouldn't have me in hospital for MRI's etc... Next week at the latest. It was a very quick process from being refered by the dentist to having the biopsy (one month) So I'm sure I'll hear something this week or early next week should cancer be found in the biopsy (which is what I'm mentally prepared for)

  • GavinP
    GavinP Member Posts: 118
    GavinP said:

    Hi Tim

    Hi Tim,

    I think the six weeks thing applies to whether the biopsy comes back with a routine result (harmless white patches caused by friction with my teeth, for example)

    Should be biopsy come back with cancer, I just can't believe they wouldn't have me in hospital for MRI's etc... Next week at the latest. It was a very quick process from being refered by the dentist to having the biopsy (one month) So I'm sure I'll hear something this week or early next week should cancer be found in the biopsy (which is what I'm mentally prepared for)

    Hi all

    Just to let you know, still haven't heard anything from the hospital. I'm assuming I'll get a call on Monday if theres cancer.

    Will let you know next week.

  • Billie67
    Billie67 Member Posts: 898
    GavinP said:

    Hi all

    Just to let you know, still haven't heard anything from the hospital. I'm assuming I'll get a call on Monday if theres cancer.

    Will let you know next week.

    Gavin
    Just try and relax, I know it's not easy but try and relax and enjoy the weekend. I still have positive attitude and a good feeling about your results.
    Billie
  • Ingrid K
    Ingrid K Member Posts: 813
    GavinP said:

    Hi all

    Just to let you know, still haven't heard anything from the hospital. I'm assuming I'll get a call on Monday if theres cancer.

    Will let you know next week.

    too long to wait

    Gavin

    Call the doc's office tomorrow.  It's been too long.  Tell them you want to know the test results NOW so you can put your mind at ease.

  • denistd
    denistd Member Posts: 597
    Ingrid K said:

    too long to wait

    Gavin

    Call the doc's office tomorrow.  It's been too long.  Tell them you want to know the test results NOW so you can put your mind at ease.

    Gavin

    I too am a limey Gavin although I live in The US. There is a difference in response time from the US to the UK. I had larynx cancer in 2009, when I went to the ENT to see why I had a sore throat and fading voice he arranged a biopsy 3 days later, I got the result in two days and was in the hospital getting a peg 4 days later and started treatment in three weeks. I suggest that you give your doctor a call and create, also, and this is very important, if there is a delay call the MacMillan organization, that is a managing group of nusres that will push hard for everything, will visit you and see what you need, they often come to your home and arrange things (like steel supports in the bathroom etc) This is all done with no charge, the UK is different than the US as we do not have government run healthcare, at least not yet, I fear it is coming. Take advantage of the help you get in England. Denis

  • GavinP
    GavinP Member Posts: 118
    denistd said:

    Gavin

    I too am a limey Gavin although I live in The US. There is a difference in response time from the US to the UK. I had larynx cancer in 2009, when I went to the ENT to see why I had a sore throat and fading voice he arranged a biopsy 3 days later, I got the result in two days and was in the hospital getting a peg 4 days later and started treatment in three weeks. I suggest that you give your doctor a call and create, also, and this is very important, if there is a delay call the MacMillan organization, that is a managing group of nusres that will push hard for everything, will visit you and see what you need, they often come to your home and arrange things (like steel supports in the bathroom etc) This is all done with no charge, the UK is different than the US as we do not have government run healthcare, at least not yet, I fear it is coming. Take advantage of the help you get in England. Denis

    Still no news

    Nothing from the hospital at all. I can't believe they haven't got the results back by now, so I'm beginning to think maybe I'm in the clear.

    On the other hand I still feel terrible. I weighed myself today and I've gone from 12 stone to 11 stone in the past month.

    Might just be worry and anxiety, but thats a lot of weight to lose in a month.

    On the other hand I don't have any pain or swellings in my mouth or neck region. If this is cancer the first place it would spread to would be my neck and throat I think?

    Generally I take the view with medical issue that no news is good news, but I can't understand why my overall condition is getting worse and worse (unless its anxiety)

    Think I'll give the hospital a call tomorrow. I can't keep going on like this. 

  • Grandmax4
    Grandmax4 Member Posts: 723
    GavinP said:

    Still no news

    Nothing from the hospital at all. I can't believe they haven't got the results back by now, so I'm beginning to think maybe I'm in the clear.

    On the other hand I still feel terrible. I weighed myself today and I've gone from 12 stone to 11 stone in the past month.

    Might just be worry and anxiety, but thats a lot of weight to lose in a month.

    On the other hand I don't have any pain or swellings in my mouth or neck region. If this is cancer the first place it would spread to would be my neck and throat I think?

    Generally I take the view with medical issue that no news is good news, but I can't understand why my overall condition is getting worse and worse (unless its anxiety)

    Think I'll give the hospital a call tomorrow. I can't keep going on like this. 

    Praying

    your biopsy comes back negative~~the waiting is the hardest part, I had my biopsy and they didn't book an appointment for results til 3 weeks later..I kept telling my husband, I'm not worried, surly if it's positive they'll call me in earlier...didn't even have my hubs go with me to appontment, I was that sure of good news, alas, it wasn't. BUT, like all the kind, helpful folks on here, I made it through and so will you if worse comes to worse..

     

  • GavinP
    GavinP Member Posts: 118
    Grandmax4 said:

    Praying

    your biopsy comes back negative~~the waiting is the hardest part, I had my biopsy and they didn't book an appointment for results til 3 weeks later..I kept telling my husband, I'm not worried, surly if it's positive they'll call me in earlier...didn't even have my hubs go with me to appontment, I was that sure of good news, alas, it wasn't. BUT, like all the kind, helpful folks on here, I made it through and so will you if worse comes to worse..

     

    So...

    I rang the hospital yesterday and they say the biopsy results still aren't back. Not sure if this is a good or a bad sign to be honest?

    Its hard to believe that the pathologist wouldn't have a good idea what he is looking at by this point, IMO....

    One way or another there should be a definitive answer next week.

    In the meantime theres no new white lesions or patches appearing since the biopsy. And infact the area where they took away the newer piece of leukoplakia which formed around November'ish is looking a lot better with even the scar tissue starting to fade and go back to a relatively pink colour.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    GavinP said:

    So...

    I rang the hospital yesterday and they say the biopsy results still aren't back. Not sure if this is a good or a bad sign to be honest?

    Its hard to believe that the pathologist wouldn't have a good idea what he is looking at by this point, IMO....

    One way or another there should be a definitive answer next week.

    In the meantime theres no new white lesions or patches appearing since the biopsy. And infact the area where they took away the newer piece of leukoplakia which formed around November'ish is looking a lot better with even the scar tissue starting to fade and go back to a relatively pink colour.

    again

    It takes no more than an hour to fix a series of H and E slides from a soft tissue biopsy.  It takes less than a minute to read them.  For general purposes, with squamous cancer, you really don't even need a microscope.  You just hold them up to the light.  If they are blue, it's cancer.  If they are pink, it probably isn't.  The slides have long since been read.  It doesn't matter whether you are north or south of the equator.  If the transcriptionist is typing one word per day, perhaps it takes weeks to get a hard copy of  a report.  The system just isn't accomodating you.  Sorry.  That's just the way it is.

     

    best

     

    Pat

  • corleone
    corleone Member Posts: 312 Member
    GavinP said:

    So...

    I rang the hospital yesterday and they say the biopsy results still aren't back. Not sure if this is a good or a bad sign to be honest?

    Its hard to believe that the pathologist wouldn't have a good idea what he is looking at by this point, IMO....

    One way or another there should be a definitive answer next week.

    In the meantime theres no new white lesions or patches appearing since the biopsy. And infact the area where they took away the newer piece of leukoplakia which formed around November'ish is looking a lot better with even the scar tissue starting to fade and go back to a relatively pink colour.

    The only explanation that

    The only explanation that comes to my mind is that besides the usual slide coloration (like the H&E longtermsurvivor mentioned) they are also running some special coloration, including Immunohistochemistry, to pinpoint/confirm the diagnosis. This usually takes 10 days (for economy reasons they are running those in batches, that’s why it takes much longer than it should; also the paraffin inclusion alone takes at least a couple of days)). I agree that a preliminary diagnosis can be made in minutes (like during surgery) but the pathology lab might have to wait for all the results before sending out the final bulletin... In my case the results came back after 10 calendar days (at a Hospital in Toronto).

     

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    corleone said:

    The only explanation that

    The only explanation that comes to my mind is that besides the usual slide coloration (like the H&E longtermsurvivor mentioned) they are also running some special coloration, including Immunohistochemistry, to pinpoint/confirm the diagnosis. This usually takes 10 days (for economy reasons they are running those in batches, that’s why it takes much longer than it should; also the paraffin inclusion alone takes at least a couple of days)). I agree that a preliminary diagnosis can be made in minutes (like during surgery) but the pathology lab might have to wait for all the results before sending out the final bulletin... In my case the results came back after 10 calendar days (at a Hospital in Toronto).

     

    While technically what you say is correct, there isn't a chance in the  world that this situation requires special stains.  And so we don't unnecessary spook an already antsy patient, if  it did, there would still be a provisional diagnosis by now.  And that diagnosis could certainly be shared by the primary physician with the patient.  It isn't as though ten or fourteen days after the biopsy all of a sudden we decide someone has cancer.  To the OP:  all of this discussion is a tempest in a teapot.  The odds of your circumstances resulting in a  cancer diagnosis are small, but not zero.  The lack off communication is a function of your system, and of the uncaring attitudes that system engenders.  It neither suggests, nor refutes the cancer diagnosis.  And frankly, we've seen this kind of delay in Canada as well.

     

    best to you and to the OP

     

    Pat

  • Ingrid K
    Ingrid K Member Posts: 813
    GavinP said:

    So...

    I rang the hospital yesterday and they say the biopsy results still aren't back. Not sure if this is a good or a bad sign to be honest?

    Its hard to believe that the pathologist wouldn't have a good idea what he is looking at by this point, IMO....

    One way or another there should be a definitive answer next week.

    In the meantime theres no new white lesions or patches appearing since the biopsy. And infact the area where they took away the newer piece of leukoplakia which formed around November'ish is looking a lot better with even the scar tissue starting to fade and go back to a relatively pink colour.

    too much already

    Gavin

    you have a LOT more patience than I would have.  I would be burning up the phone lines, and might have even paid them an inperson visit by now.

    There is no good reason to add to a patient's anxiety by making the wait so much longer than it has to be.

    Good Luck and hopefully you will hear something soon.