Your average, run of the mill tongue tumor (longish)

Tonita
Tonita Member Posts: 197 Member
edited September 2017 in Head and Neck Cancer #1

My history is SCC of the tongue, right side, relatively small removed March 2016 along with 42 lymph nodes all clear, clean margins.  I had no chemo and no radiation for which I am extremely grateful, but I do have some problems and wonder if there are any others in my situation.  I realize that no two surgeries or tumors are the same, but I can't believe I'm the only one either.

At my three month check up with the surgeon, I told him that the tongue he left me with was extremely uncomfortable borderline painful.  The tumor was removed from the right side of my tongue and he just curved the tip of my tongue to the right and sort of puckered it together and sutured it closed leaving a mis-shaped tongue with a big bulge and a couple of jagged pieces on the edge.  At that visit, he said he could fix that, out patient no problem.  I didn't schedule anything at that time because it was too soon after the surgery and just didn't want to.  Since I was moving he referred me to a surgeon he knew at Dartmouth where I get all my medical care.

At my visit to the new doctor, he essentially told me I brought it on myself because I smoked and said that I would most likely have to learn to live with my tongue the way it is.  He couldn't give me anything to calm down inflammation - nothing to help.  He sent me to speech therapy. 

This past July, I revisited the original surgeon to discuss what he told me about fixing my tongue and he changed his position and said there wasn't much he could do.  I was crushed.

So, about a week after that visit, I noticed a sore on the right side of my tongue that was really painful.  Everything I ate stung.  I was kind of scared so I went to my Dr. here in NH for a check.  She took a little biopsy and it came back with "possible recurrance" but they really didn't see anything that looked like cancer.  In the meantime, I went to the dentist and he smoothed out the teeth right under the sore spot and it made a world of difference.  It seems like the sore is healing and it is pain free. 

So, I have questions about the shape of my tongue.  I recently had MOHS surgery on my nose and they removed a growth.  So, the dermatologist/surgeon removed the area and then Plastic Surgery comes in to close the area.  The surgeon who removed my tumor was doing what he is supposed to do - remove the tumor.  I doubt he is concerned about how the tongue looks or feels afterward.  He did his job.  But where does that leave me?  Live what's left of my lifetime with this extreme discomfort?  That's why I'm asking if anyone had the same experience.  Tumor removal with no treatment afterward.  I can't be the only one.

Thanks

Comments

  • swopoe
    swopoe Member Posts: 492
    #2
     My husband also had a small,

     My husband also had a small, stage 1, tumor on his tongue, if you remember. Right side too. His surgeon removed it completely, also with clean margins. But his tongue barely looks any different from how it looked before. There wasn't a plastic surgeon involved in the original surgery, but my husband's doctor is the best in Houston, and I guess for good reason. I don't see why you have to live with this tongue discomfort forever. There has to be another surgeon (someone in Boston maybe?) that can give you another opinion. I am sorry for all you are dealing with, Tonita.

  • Tonita
    Tonita Member Posts: 197 Member
    edited September 2017 #3
    swopoe said:

     My husband also had a small,

     My husband also had a small, stage 1, tumor on his tongue, if you remember. Right side too. His surgeon removed it completely, also with clean margins. But his tongue barely looks any different from how it looked before. There wasn't a plastic surgeon involved in the original surgery, but my husband's doctor is the best in Houston, and I guess for good reason. I don't see why you have to live with this tongue discomfort forever. There has to be another surgeon (someone in Boston maybe?) that can give you another opinion. I am sorry for all you are dealing with, Tonita.

    Thanks swopoe.  I think it

    Thanks swopoe.  I think it wasn't the tumor that was all that big, but the cutting to finally get a clean margin might be the culprit.  Not enough tongue removed to justify a graft but enough to cause malformation that I can't accept in my mouth.

    I am seeing a plastic surgeon later this month for a re check on my MOHS surgery.  I'm going to ask him about it.

  • Tonita
    Tonita Member Posts: 197 Member
    #4
    I wonder, if I had some kind

    I wonder, if I had some kind of freak accident that took out a small chunk from my tongue, who would ER call in?  I seriously doubt they would call the Head and Neck Cancer doctor to fix it.

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    edited September 2017 #5
    New Doctor

    Hi Tonita, that really is awful about your tongue.  Having a plastic surgeon look at it is the wisest course of action IMO.  My Head and Neck doctor has a partner who is a plastic surgeon.  He works alongside to attempt to fix any problems like yours.  Oral cancer can surely do a number on a mouth.  We get very sensitive to not looking or talking normal.  It took me a few weeks to talk straight again and my tongue is lopsided where he removed a medium sized tumor from the base.  Lucky for me I still have a tongue.  That was my worst fear going under.  Wondering if I'd wake up w/o a tongue.  Hope it goes well from here on in.

  • headandnecksurgeon
    headandnecksurgeon Member Posts: 1
    edited September 2017 #6
    hi tonita. sorry to hear

    hi tonita. sorry to hear about your problem. I will try to answer some of your questions. The indication to perform some type of graft or reconstruction or to just close things primarily (stiches only) is very subjective. Smaller resections are very amenable to primary closure or a skin graft wheras larger resections will require a free flap. From the rest of your posts it sounds like you have two different issues 1)pain and discomfort and 2) tongue assymetry. There is little you can do in regards to the shape of the tongue unless it is excessively tethered in which case you might be a candidate for a release of the tongue and scar tissue. My recommendation is to find a head and neck surgeon with extensive training that has a large portion of their practice dedicated to treating head and neck cancer. The majority of fellowship trained head and neck surgeons (both otolaryngologists and oral and maxillofacial surgeons) currently are trained in both the removal and reconstruction of the tumor and should be able to give you some guidance. all the best.

  • Tonita
    Tonita Member Posts: 197 Member
    #7
    Both of my doctors are all

    Both of my doctors are all that you listed, one at Yale who did the original surgery and the other at Dartmouth. 

    I am not a candidate for a release.  I can move my tongue every which way with no problem.

    I did see the plastic surgeon for a follow up.  He did the "close" at my MOHS surgery.  I did ask him about my tongue and said he could do something to correct this and I should talk to my surgeon again about it.  I may do that but I certainly am not anxious for another surgery on my tongue.  At my follow up with the plastic doc, I'll get more detail about what he can do.  Also, not sure if insurance would cover this as it isn't "necessary".

    Thanks for the responses.

     

  • Tonita
    Tonita Member Posts: 197 Member
    edited September 2017 #8
    tommyodavey said:

    New Doctor

    Hi Tonita, that really is awful about your tongue.  Having a plastic surgeon look at it is the wisest course of action IMO.  My Head and Neck doctor has a partner who is a plastic surgeon.  He works alongside to attempt to fix any problems like yours.  Oral cancer can surely do a number on a mouth.  We get very sensitive to not looking or talking normal.  It took me a few weeks to talk straight again and my tongue is lopsided where he removed a medium sized tumor from the base.  Lucky for me I still have a tongue.  That was my worst fear going under.  Wondering if I'd wake up w/o a tongue.  Hope it goes well from here on in.

    Thanks.  I was sent for

    Thanks.  I was sent for speech therapy.  I was never concerned about my speech.  It didn't help.  It can't change the shape of my tongue. 

    At this moment, I'm pain free and back to the tongue being an annoyance and uncomfortable.  And you're right, things could always have been worse.

  • Tonita
    Tonita Member Posts: 197 Member
    #9
    swopoe said:

     My husband also had a small,

     My husband also had a small, stage 1, tumor on his tongue, if you remember. Right side too. His surgeon removed it completely, also with clean margins. But his tongue barely looks any different from how it looked before. There wasn't a plastic surgeon involved in the original surgery, but my husband's doctor is the best in Houston, and I guess for good reason. I don't see why you have to live with this tongue discomfort forever. There has to be another surgeon (someone in Boston maybe?) that can give you another opinion. I am sorry for all you are dealing with, Tonita.

    I know that after he removed

    I know that after he removed the tumor he had to keep cutting to finally get clean margins.  I don't think my tumor was all that big.  I'm sure no two tumors/surgeries are the same.  How long was your husband's surgery.  Mine was about 5 1/2 hours.  I had 42 lymph nodes removed as well.

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