T1N0M0 Tongue Survivor, is there any?

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Hi, I´ve been looking around this forum to someone T1N0M0 tongue cancer survivor. Didn´t find anything on the archives... Is there any? Since I´m 46 days of my surgery I´d like to head some stories by someone with similar situation. Thanks a lot again!

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  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    I'll be the first to reply
    Braziliangirl82,

    I will start by saying that I had a tumor on the Base of my Tongue and had part of my tongue removed. That was over 7 years ago. I was first told I was T1N1M0 but ended up being T1N2M0.

    Are you 46 days out from your Surgery or is it 46 days before your Surgery? I don't want to assume anything. T1N0M0 is better then having T1N1M0 as there are no Lymphnodes involved which means you caught it early.

    Others will come along shortly and will have more to say. Will you have any follow-up treatments? Such as any Radiation?

    My Best to You and Everyone Here
  • braziliangirl82
    braziliangirl82 Member Posts: 42
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    MarineE5 said:

    I'll be the first to reply
    Braziliangirl82,

    I will start by saying that I had a tumor on the Base of my Tongue and had part of my tongue removed. That was over 7 years ago. I was first told I was T1N1M0 but ended up being T1N2M0.

    Are you 46 days out from your Surgery or is it 46 days before your Surgery? I don't want to assume anything. T1N0M0 is better then having T1N1M0 as there are no Lymphnodes involved which means you caught it early.

    Others will come along shortly and will have more to say. Will you have any follow-up treatments? Such as any Radiation?

    My Best to You and Everyone Here

    Hi Marine
    thanks for replying so quickly. It´s been 46 days since i had my tongue surgery. Lost about 2cm X 3cm of my tongue, not much as the doctor said. I had primary closure thatis making my speech a bit strange, working in speech therapy.

    My surgery was december 07, 2011. Since I don´t had clinically active lymphonodes the doctor made elective neckdissection surgery on december 21, 2011. None of my 57 lymphonodes were cancerous, it means all cancer free.

    That´s why the doc didn´t recomend any other treatment, just constant follow-ups.

    About your case then it means you are cancer free from 7 years? No recurrences? Which treatments? Thanks a lot, be happy to share this.
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Hi Marine
    thanks for replying so quickly. It´s been 46 days since i had my tongue surgery. Lost about 2cm X 3cm of my tongue, not much as the doctor said. I had primary closure thatis making my speech a bit strange, working in speech therapy.

    My surgery was december 07, 2011. Since I don´t had clinically active lymphonodes the doctor made elective neckdissection surgery on december 21, 2011. None of my 57 lymphonodes were cancerous, it means all cancer free.

    That´s why the doc didn´t recomend any other treatment, just constant follow-ups.

    About your case then it means you are cancer free from 7 years? No recurrences? Which treatments? Thanks a lot, be happy to share this.

    2 Lymphnodes involved
    Braziliangirl82,

    I had the 2 Lymphnodes involved and I had a Radical Neck disection done. I recovered from the Surgery and then I had 30 Radiation Treatments around my neck and face because of the Lymphnodes, which took 7 weeks as I was going thru the treatments over our Holidays.

    You are correct, I had no recurrences of my Base of Tongue Cancer. I unfortunately got Melanoma on my left cheek one year later and had the same Surgeon remove it along with a Sentinal lymphnode which was cancer free. He reconstructed my face a bit after the surgery. He had taken a fairly large margin to be safe. He is also a Plastic Surgeon and people can't tell that I had the surgery on my face.

    I hope your follow-ups all remain clear.

    My Best to YOU and Everyone Here
  • braziliangirl82
    braziliangirl82 Member Posts: 42
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    MarineE5 said:

    2 Lymphnodes involved
    Braziliangirl82,

    I had the 2 Lymphnodes involved and I had a Radical Neck disection done. I recovered from the Surgery and then I had 30 Radiation Treatments around my neck and face because of the Lymphnodes, which took 7 weeks as I was going thru the treatments over our Holidays.

    You are correct, I had no recurrences of my Base of Tongue Cancer. I unfortunately got Melanoma on my left cheek one year later and had the same Surgeon remove it along with a Sentinal lymphnode which was cancer free. He reconstructed my face a bit after the surgery. He had taken a fairly large margin to be safe. He is also a Plastic Surgeon and people can't tell that I had the surgery on my face.

    I hope your follow-ups all remain clear.

    My Best to YOU and Everyone Here

    Great news!
    Those are great news! No recurrences!
    do U know the cause of melanoma? was it caused by radiation?
    how old are u and where 5 u from?
    thanks
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Great news!
    Those are great news! No recurrences!
    do U know the cause of melanoma? was it caused by radiation?
    how old are u and where 5 u from?
    thanks

    My Melanoma
    BG82,

    The cause of my Melanoma could have been because I am fair skinned and blue eyes, I burn easily, so the sun is not my friend. Did the radiation cause my Melanoma? A question I asked my Doctors and they stated- NO. The Radiation does change the DNA in our tissue that is radiated. Did me being in the sun after treatment cause me to get the Melanoma afterwards be the reason? I have no diffinite answer to that question.

    I know that I do not take any chances with it as I wear a hat when in the sun, use sun screen and at times, wear long sleeve shirts in the summer. I wear a shirt when swimming.

    Age wise I am in my mid 60's now, and I hope to be 100 one day, live near Philadelphia, PA, USA

    My Best to You and Everyone Here
  • ratface
    ratface Member Posts: 1,337 Member
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    MarineE5 said:

    My Melanoma
    BG82,

    The cause of my Melanoma could have been because I am fair skinned and blue eyes, I burn easily, so the sun is not my friend. Did the radiation cause my Melanoma? A question I asked my Doctors and they stated- NO. The Radiation does change the DNA in our tissue that is radiated. Did me being in the sun after treatment cause me to get the Melanoma afterwards be the reason? I have no diffinite answer to that question.

    I know that I do not take any chances with it as I wear a hat when in the sun, use sun screen and at times, wear long sleeve shirts in the summer. I wear a shirt when swimming.

    Age wise I am in my mid 60's now, and I hope to be 100 one day, live near Philadelphia, PA, USA

    My Best to You and Everyone Here

    T1N2bMX
    I would think almost everyone here is at least stage 3 and most are stage 4. It's just the nature of the beast with head and neck. It would be a good idea for us to all post our staging with every post as is done over on the OCF forum but this is a little different kind of place. Something like this:

    T1N2bMX, July 2009, 39 rads, x3-21 day regimes of cisplatin, selective neck dissection. Doing well.
  • braziliangirl82
    braziliangirl82 Member Posts: 42
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    ratface said:

    T1N2bMX
    I would think almost everyone here is at least stage 3 and most are stage 4. It's just the nature of the beast with head and neck. It would be a good idea for us to all post our staging with every post as is done over on the OCF forum but this is a little different kind of place. Something like this:

    T1N2bMX, July 2009, 39 rads, x3-21 day regimes of cisplatin, selective neck dissection. Doing well.

    good idea!
    this is really a good idea. I feel lost around, not only in this forum but it´s hard to find people in stages similar to mine. Maybe they aren´t worried enough to make part of the forums.

    But I am. Too worried in fact. I´m thinking of it all the time. Since I don´t smoke or drink this is driving me crazy, just thinking in the possibility of this come back.

    T1N0M0, tongue surgery, profilatic neck dissection, 0/57 nodes. No chemo or rads.
  • staceya
    staceya Member Posts: 720
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    good idea!
    this is really a good idea. I feel lost around, not only in this forum but it´s hard to find people in stages similar to mine. Maybe they aren´t worried enough to make part of the forums.

    But I am. Too worried in fact. I´m thinking of it all the time. Since I don´t smoke or drink this is driving me crazy, just thinking in the possibility of this come back.

    T1N0M0, tongue surgery, profilatic neck dissection, 0/57 nodes. No chemo or rads.

    I was T1NOMO
    I was T1NOMO, NPC, tonsil area HPV 16 +, 35 rad treatments, No chemo. No dissection.
    Treatment in Montana. 2nd opinion at Mayo Clinic.
    Rad tx finished 3/9/10. Scans and scopes every 4- 6 months. NED so far.
    Good luck
    Stacey