Just Diagnosed with a Tumor in my Tongue

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KarenSuki
KarenSuki Member Posts: 9
in Head and Neck Cancer #1

I just wanted to say hi before I passed out for the night. I was diagnosed about a couple of weeks ago with a Tumor located on the underside of my tongue. The doctor wrote the official name on a card in my purse. And the only thing I remember right now is that it is Stage 2 vs. Stage 3.

I am just recovering from the emotional rollercoaster with the realization that I am not superwoman. I was looking around the web for any information about treatments and after effects. The radiation specialist that I went to see said that the area does not stay still enough for radiation treatments since it is my oral tongue.

I've had a CT Scan with the dye and it did not show any spread of the tumor. I am trying to get a PET scan scheduled just to make sure the tumor has stayed put. The ENT specialist and the radiation doctor both said that surgery was the best choice. I'm terrorified of surgery. I think that it is mainly because it is not something I can control.

Anyway, I am happy I stumbled upon this forum. I was getting a little freaked out about the stuff I was seeing on the internet.

I have a question though: Does anyone hear know of anything I can do to help shrink the tumor naturally before surgery? I am eating flaxseed mixed into my breakfast of oatmeal each morning and takin capsacin tablet. At the very least the flaxseed is soft enough for me to eat and I have noticed that the capsacin tends to dull the refered pain in my ear.

Time to sleep (if I can). I have work in the morning,

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    welcome

     Karen,

    Welcome to the H&N forum, so sorry you find yourself here.

    My cancer was at the base of my tongue and it remained still for 35 radiation treatments.  I had surgery to remove the cancer so; I guess you could call the   rads a clean-up operation.  My tongue surgery wasn’t too bad and I had virtually no pain.

    I don’t know any practical methods for shrinking the tumor now, but I am sure your doctor has a plan to shrink it.

    No need to search for info, just ask away, we have got the inside track and some of the info can actually clam you down.

    Work tomorrow?  We will see about that.

    Good luck, stay calm, if I can do it you can do it.

    Matt

  • donfoo
    donfoo Member Posts: 1,771 Member
    #3
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    Welcome to CSN

    Hi Karen,

    The folks here have a lot of first hand experience to offer lots of support and answer questions. Surgery is scary but most people recover the quickest and have the fewest side effects from surgery. You will want to keep tuned in when the topic of margins comes up. What you want to hear is they feel they have clear margins as that generally means other treatments might be avoided.

    If you find the card with the full diagnosis, posting it here helps us understand better what you are facing. Take care and know the doctors know best! Don

  • Goyca
    Goyca Member Posts: 220
    #4
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    hello karen

    Im sorry to hear that you have to go through this.

    But i want to tell you that we r here for you. I dont have idea of experience in tongue cancer.

    Stay positive :) i will pray for you. please keep us updated.

     

    Goyca.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
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    Hi Karen

     I too am sorry to hear this but don’t let it get you down, there are a lot of other here that had the same and they are doing well.

    PS: Also Welcome to our family here in CSN H&N I hope you plan to stay with us.

     

    Hondo

  • ratface
    ratface Member Posts: 1,337 Member
    #6
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    Surgery is the best option for you presently

    Welcome to the Board Karen.  Don't be afraid of surgery and if an option for the Davinci robotic surgery don't be afraid of that either. Your diagnosis is very treatable and curable! Forget the the natural remedies as there is nothing out there documented to reduce tumor size naturally. You also want to tell your doctor about any supplements (FYI spicey foods have actually been linked to throat cancer) you take so that they don't interfere with treatment. Get your PET scan and get on the treatment BUS with us!

  • hwt
    hwt Member Posts: 2,328 Member
    #7
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    ratface said:

    Surgery is the best option for you presently

    Welcome to the Board Karen.  Don't be afraid of surgery and if an option for the Davinci robotic surgery don't be afraid of that either. Your diagnosis is very treatable and curable! Forget the the natural remedies as there is nothing out there documented to reduce tumor size naturally. You also want to tell your doctor about any supplements (FYI spicey foods have actually been linked to throat cancer) you take so that they don't interfere with treatment. Get your PET scan and get on the treatment BUS with us!

    Karen

    Welcome but sorry you had the need to find us. My cancer was of the jaw but many here seem to have had the tongue involved. Given an option, I would pick surgery over radiation any day of the week. We all got through it but head and neck radiation is a tough one. 

    Hope your journey is an easy one.

    Candi

  • PJ47
    PJ47 Member Posts: 376
    #8
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    Hello Karen

    Surgery is usually first line if the tumor is not too advanced, so it is actually good news.  It is scary, but in the hands of a good surgeon you will be fine.  I had TORS (trans oral robotic surgery).  Mine was BOT (base of tongue).  I went to Vanderbilt for my surgery and Hopkins was my back up plan.

    Great news that your CT showed no spread!

    As far as shrinking the tumor, only thing I know you can do to help contain it is maybe take curcumin, drink lots of green tea and continue eating healthy, but that will not make it go away.

    Radiation "melts" the tumors often, but if it can be removed surgically that may be your best option with fewest side effects.  If you are going to a Cancer Center or teaching hospital, they will have a tumor board and that will mean many professionals will give you their recommendations for treatment (more eyes and check and balances).

    Assuming you have had a biopsy done, has the ENT tested the tissue for HPV?  That will be a  good thing to know.

    Best to you,

    PJ

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #9
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    Karen,
    i had a cancerous

    Karen,

    i had a cancerous lesion surgically removed from the left lateral side of my tongue last September. Then in October lymph nodes were removed from my neck. All margins looked good. Then in January, one node lit up and had another neck dissection. Again, April another node involved And another neck dissection. Now I must do chemo & radiation. 

    Generally, the first step is to surgically remove the lesion. Often times that is all that's needed. Unfortunately, for me, this wasn't the case even though it was caught early. 

    I'm hoping and sending prayers that you will be one who only needs surgery. Best to you. Stay strong whatever the outcome. 

    BunnyMom

     

  • KarenSuki
    KarenSuki Member Posts: 9
    #10
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    Found my diagnosis

    Sort of sad that it is scribbled on a business card... Anyway it is Squamous Cell Carcinoma Oral Tongue T2 vs. T3 (Stage II vs. Stage III).

    And yes I had a biopsy, which was cauterized, but broke open later in the evening. I bled all over the place and landed in the ER. The ER doctor was able to recauterize the biopsy site, but that was really scary.

    I'm keeping it short tonight. I worked a 13 hour shift and I'm in enough pain right now I would gladly let someone cut the tumor out. I need to pick up my pain med prescription from the pharmacy tomorrow.

  • FRONT AND CENTER
    FRONT AND CENTER Member Posts: 29
    #11
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    KarenSuki said:

    Found my diagnosis

    Sort of sad that it is scribbled on a business card... Anyway it is Squamous Cell Carcinoma Oral Tongue T2 vs. T3 (Stage II vs. Stage III).

    And yes I had a biopsy, which was cauterized, but broke open later in the evening. I bled all over the place and landed in the ER. The ER doctor was able to recauterize the biopsy site, but that was really scary.

    I'm keeping it short tonight. I worked a 13 hour shift and I'm in enough pain right now I would gladly let someone cut the tumor out. I need to pick up my pain med prescription from the pharmacy tomorrow.

    Squamous Cell Carcinoma

    I know it well.  I also had a lesion on my tongue but I waited.  And waited.  And waited as I treated it as if it was everything but cancer.   It was Stage 3 when diagnosed.  I had surgery to remove the cancerous lesion that had grown to over 3cm.  (It was nasty!)

    IF I had to do it again, I would get the surgery as soon as my canker sore didn't heal!  I believe the earlier the detection (and treatment), the better the outcome. 

    Good luck.  Be strong.  

    Kelly

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #12
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    KarenSuki said:

    Found my diagnosis

    Sort of sad that it is scribbled on a business card... Anyway it is Squamous Cell Carcinoma Oral Tongue T2 vs. T3 (Stage II vs. Stage III).

    And yes I had a biopsy, which was cauterized, but broke open later in the evening. I bled all over the place and landed in the ER. The ER doctor was able to recauterize the biopsy site, but that was really scary.

    I'm keeping it short tonight. I worked a 13 hour shift and I'm in enough pain right now I would gladly let someone cut the tumor out. I need to pick up my pain med prescription from the pharmacy tomorrow.

    karen, welcome to our

    karen, welcome to our family.  i'm very glad you found us and i know you will get much more informed inforation here then on the internet.  SCC is common here with us and T2 isn't that bad.  it will still be a rough road but is very doable.  mine was T2 of the larynx.  i'm 2 yrs cancer free now.  had rad tx then surgery.  i'm glad the doc got that bleeding stopped.  wow, that must have really been scary.  thank goodness for er's.  wow, 13 hours is a long, long shift.  are you in the medical field?  my niece is a nurse and she used to work 12 hour shifts :0(   well, just want to say welcome and i'm glad you are here but so sorry for the reason.  ask any quesion you have or vent when you feel angry or upset and share good news when you feel happy.  nothing is off limits, post whatever you are feeling.  we will be here to help you thru your jouney.

    God bless you,

    dj

  • Bart T
    Bart T Member Posts: 62 Member
    #13
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    HAD THE SURGERY

    Sounds a lot the same diagnosis I had. Shortly after the diagnosis, I had a procedure called a  Hemiglossectomy, where part of the tongue was removed and reconstructed. At the same time I had a neck dissection where a batch of lymph nodes were removed. The surgery wasn't that terrible.

    Going into the surgery, I was very worried about the impact the surgery would have on my speech and eating. I was out of the hospital in a few days, and within a couple of weeks, speech was about back to normal, and within a few weeks I was back to eating solid foods and feeling just about 100%.

    One of my lymph nodes came back positive, so I had to have radiation. With any luck, you may need nothing more than the surgery. The radiation was much worse than the surgery and left me with some side effects which are very annoying, although they do not interfere with my ability to go about all my normal activities. The only advice I would offer at this point is to stay calm, find a surgeon who specializes in this type of surgery, and hope for the best. If you're so inclined, a prayer or two won't hurt. At this point, your cancer is not only treatable, after a brief recovery period, you’ll be back to just about normal.

     

    Best of luck to you. Feel free to send me a private message if you do get scheduled for the same surgery and want me to share my experience in greater detail. 

  • Robyn64
    Robyn64 Member Posts: 124
    #14
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    Hello

    Hi Karen,

     

    Wishing you the very best with your upcoming treatment. I also have squamous cell cancer of the base of tongue T1 & T2 , hpv. My treatment starts on the 23rd. Scarey journey that a few of us will be starting shortly, look ahead and focus on the end result :-)

    Take good care of yourself ,

    Robyn

  • Guzzle
    Guzzle Member Posts: 710
    #15
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    Robyn64 said:

    Hello

    Hi Karen,

     

    Wishing you the very best with your upcoming treatment. I also have squamous cell cancer of the base of tongue T1 & T2 , hpv. My treatment starts on the 23rd. Scarey journey that a few of us will be starting shortly, look ahead and focus on the end result :-)

    Take good care of yourself ,

    Robyn

    Good Luck

    Karen, just got through treatment for tonsil cancer spread to a couple of nodes and hence left neck dissection. Cant add much to above other than to say sorry you are here but as has been said it is treatable and the very best to you, G.

  • patricke
    patricke Member Posts: 570
    #16
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    GETTING STARTED

    Hey Karen,

    I am very sorry to hear that you have been attacked by the beast, but it sounds like your doc caught it at a fairly early stage, that's the good news.  As you have no doubt heard from others there is no magic tumor shrink product available.  Back in the day when I got my beasty news, I locked my mind into battle mode, decided to do what needed to be done, and to hit the ground running;  and most importantly stay positive.  What you think and believe as you go through your treatment and recovery journey are the two things that you will have control of, so I encourage you to stay in the positive mind set as much as possible; easier said than done, I know.  The words that always and still do pull me through challenges at all levels are: "I Can Do This," which I sometimes have said and do say upon opening my eyes in the morning.  I now share, and pass these very powerful words and thoughts on to you to literally say to yourself when you need the push, "I Can Do This!"  And, You Will, one day, hour, minute, second, or nanosecond, whichever unit is appropriate at the time you need to remind yourself.

    PATRICK 

  • KarenSuki
    KarenSuki Member Posts: 9
    #17
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    Thank you for all the

    Thank you for all the encouragement... I am in the newspaper/publishing business so when special projects come up I work long hours. I think I'm back to a normal shift of a few weeks. 

    I spent all weekend crabbing and fishing. Only caught small dungeness crabs so a commercial fisherman took pity on my husband and handed him a very large crab off the boat with just one claw. (can't sell that one).

    Finally, yesterday afternoon I found myself in a cow pasture beside a weedy long pond. I actually caught two trout, 12 and 13 inches long. So I cooked them up, but was too tired to eat them last night. I'll get to them tonight though.

    Still haven't got the PET scan scheduled. I have to go to a medical facility about 100 miles away, but the place has not called me. I know they have the insurance claim approved, but that did not happen until last Thurs. 

  • eadunaway
    eadunaway Member Posts: 3
    #18
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    KarenSuki said:

    Thank you for all the

    Thank you for all the encouragement... I am in the newspaper/publishing business so when special projects come up I work long hours. I think I'm back to a normal shift of a few weeks. 

    I spent all weekend crabbing and fishing. Only caught small dungeness crabs so a commercial fisherman took pity on my husband and handed him a very large crab off the boat with just one claw. (can't sell that one).

    Finally, yesterday afternoon I found myself in a cow pasture beside a weedy long pond. I actually caught two trout, 12 and 13 inches long. So I cooked them up, but was too tired to eat them last night. I'll get to them tonight though.

    Still haven't got the PET scan scheduled. I have to go to a medical facility about 100 miles away, but the place has not called me. I know they have the insurance claim approved, but that did not happen until last Thurs. 

    Hang in There

    Hang in there, Karen. My dad was diagnosed with the same thing and it was on the base of his tongue. He went to Vanderbilt as well and they treated him with surgery, then radiation and chemo. I highly reccommend Dr. Burkey and Dr. Netterville at Vanderbilt if you're anywhere near Tennessee. We had a 4 hour drive for every treatment, but as far as we know, they're the best in the region. Best of luck.

  • eadunaway
    eadunaway Member Posts: 3
    #19
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    PJ47 said:

    Hello Karen

    Surgery is usually first line if the tumor is not too advanced, so it is actually good news.  It is scary, but in the hands of a good surgeon you will be fine.  I had TORS (trans oral robotic surgery).  Mine was BOT (base of tongue).  I went to Vanderbilt for my surgery and Hopkins was my back up plan.

    Great news that your CT showed no spread!

    As far as shrinking the tumor, only thing I know you can do to help contain it is maybe take curcumin, drink lots of green tea and continue eating healthy, but that will not make it go away.

    Radiation "melts" the tumors often, but if it can be removed surgically that may be your best option with fewest side effects.  If you are going to a Cancer Center or teaching hospital, they will have a tumor board and that will mean many professionals will give you their recommendations for treatment (more eyes and check and balances).

    Assuming you have had a biopsy done, has the ENT tested the tissue for HPV?  That will be a  good thing to know.

    Best to you,

    PJ

    Vanderbilt

    My dad went to Vanderbilt, too. Did you have Drs. Netterville and Burkey?

  • PJ47
    PJ47 Member Posts: 376
    #20
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    eadunaway said:

    Vanderbilt

    My dad went to Vanderbilt, too. Did you have Drs. Netterville and Burkey?

    Yes I had Dr. N and Dr. Beckney a resident & Dr. Kelly Groome

    For the biopsy surgery.  Then Dr. N and Mark Van Dussen chief resident and Eric Wertz fellow for the TORS and neck disection.  They were all excellent.

    How is your Dad doing?  

    PJ

  • KarenSuki
    KarenSuki Member Posts: 9
    #21
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    Well my PET Scan is scheduled

    Well my PET Scan is scheduled for Thursday June 12 at 8am. I am going to St. Peter's in Lacey, WA. 

    Then I have to tangle with the insurance company since they are causing problems with my ENT Specialist. But It sounds like I'm being sent to the University of Washington Medical Center in Seattle. I seen where they work with the Fred Hutchinson Institute. 

     

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