What to expect with SCC excision on lateral tongue

I was recently diagnosed with SCC of the right lateral tongue.  I was one of those rare cases in which lichen planus turns to cancer.  I will be undergoing surgery next Friday at Moffitt Cancer Center.  Although pain is not something that particularly bothers me, there seems to be a recurrent theme of "pain" in relation to this surgery.  The physician who biopsied my tongue repeated three times that "It is going to hurt like hell."  At the cancer center, they upped the ante indicating that if I imagined how badly it hurt biting my tongue, multiply that by 100 and that is what it is going to feel like.  Apparently due to margin protocol, my surgeon will be excising about 10 percent of my tongue and the plan is to leave the main lesion open for heeling.  She indicated that by healing that way, the tongue will ideally feel more full when healed.  

Although my lymph nodes feel okay, the plan is to excise lymph nodes on the side of my neck in conjunction with the procedure.  Now assuming that I get lucky and there is no lymph node involvement and the margins are good (diagnosis from pathology was T1N0), what can I expect in relation to being able to get food down and most important to me as a very active athlete, when might I be able to commence exercising again?  

I am hoping to get through this without a narcotic type pain reliever after the first couple of days.  

Thanks for any input.  What I fear most is the unknown.  I have an airline pilot's mentatlity (retired airline pilot) and hence love to be in control and always have a plan.  Now I am relegated to lots of variables and everything seems a bit out of my control.  

 

 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hello, and welcome to our

    hello, and welcome to our family, the one nobody wants to join and we're always sad to get new members.  as far as you eating, that will depend on how much of your tongue the doc removes.  there are several here who had some/part/most of their tongue removed and the eating experience was quite different depending on how much was left.  will you get other tx after the surgery?  if not, you're pretty lucky as it is not an easy road.  however, we are many!!  survivors, that is!!!  since you are in great health, you may do pretty well with all of it.  as for exercising, again, that will depend on you and how well you recover.  i would think you'd have no problems getting back to it.  there are several here who couldn't wait to get back to the gym and are back to their regular workout.  get through surgery first, then worry about exercising.  i think you may be surprised how quickly you get back to it.  i will be praying for you.

    God bless you,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    pedalmasher,

    Welcome to the H&N forum, sorry you landed here, but maybe you can pedal away soon.

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, radiation & Erbitux).  The surgery on my neck and tongue did not hurt very much and did nothing to slow me down on eating.  It wasn’t until I had radiation treatments that eating difficulties multiplied 10 fold.

    The doctors always expected me to be in great pain but I never really was, just very uncomfortable.  I had lots of narcotics for pain but never consumed very much, but I would not hesitate one second to not take it and I was always prepared.

    You did not mention whether surgery was the extent of your treatment, if it is I would hope that you would heal quickly. 

    Matt

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome and sorry you need to be here. Mine was SCC in the larynx and they only biopsied bace of tongue. I did have a lung procedure and the doctor sail he would give my everything he could legally, but it would not do S**t. That was over 30 years ago and I still respect him for telling me the truth. On a scale of 1 ~10 it was at least an 11. and that was with doubleing the pain meds and two shots of morophine.

    They have much better pain meds now and when I had this surgery which was 8 hours and cut ear to ear, I had some days where there was no pain at all. Some would get to a 5 or 6 but they got it right down to 3+.  You will have some swelling so don't be too alarmed when you look in the mirror. It will get better.

    Bill

  • MrsBD
    MrsBD Member Posts: 615 Member
    Pain

    Welcome to the group. My first thought when reading your post was, "My, doesn't he have a cheerful bunch taking care of him!" Most medical staff will tell you it will be 'mildly uncomfortable ' but they will also tell you they'll do everything possible to alleviate  the pain. Right after eradicating the cancer, pain management should be a primary concern for your doctors. I would ask them why they won't be able to manage the pain, especially at such a large cancer center. It does make sense that they would leave the wound open so it can fill in as it heals naturally. My husband recently had a cut on his foot and that is what the doctor did. The mouth heals fairly quickly (think wisdom tooth extraction). It shouldn't be long until you are able to exercise. Check in again and let us know how quickly you got back on that bike. 

  • Barbaraek
    Barbaraek Member Posts: 626
    Welcome & all the best

    welcome Pedalmasher - I wish you all the best in your upcoming surgery and hope that the docs are able to manage the pain that accompanies it. Try to keep a positive attitude, we'll be pulling for you here.

     

    Barbara

  • pedalmasher
    pedalmasher Member Posts: 2
    Barbaraek said:

    Welcome & all the best

    welcome Pedalmasher - I wish you all the best in your upcoming surgery and hope that the docs are able to manage the pain that accompanies it. Try to keep a positive attitude, we'll be pulling for you here.

     

    Barbara

    Thanks for the replies

    Thanks for all of the replies gang!  The plan at the moment for my surgery at Moffitt Cancer Center is for a partial Glossectomy with the plan to take a 1 cm margin.  The surgeon indicated that I would lose about 10% of my tongue predicting a return to normal speech after healing.  They will also be excising lymph nodes on the side of the cancer which is on the left lateral tongue at about the midpoint.  From what I can gather, everything will be dependant on whether or not there is any lymph node involvement and clear margins.  If I get lucky, my uderstanding is that I will able to avoid any additional treatment such as radiation and/or chemo.   As an aside, I see that my biopsy results were listed as a T1N0.  One question I did not think of to ask his how they coud assign a number of N0 when no lymph nodes were biopsied.  I would assume that they would have just not mentioned that letter value as they did with the M value which was not listed. 

    I probably make the mistake of exuding a very positive, joking attitude and I was given the unsolicited pain analogy by the male nurse who works with the female surgeon.  He seemed like a salty type of guy and I probably come off the same way being a very active, successful athlete (currently the top rated 1500 meter runner in the USA in the 75+ age group).  Frotunately, I handle pain quite well.  My only concern is that my wife leaves to compete in the Triathlon World Championships two days after the surgery and I am hoping that I can handle the pain with no narcotics after I am released from the hospital in that I will be alone for about 3 days.  It is difficult to imagine being able to consume solid food with an open tongue lesion in that it is painful to eat now just with come lichen planus lesions on my tongue.  I will beat this!!

  • wmc
    wmc Member Posts: 1,804

    Thanks for the replies

    Thanks for all of the replies gang!  The plan at the moment for my surgery at Moffitt Cancer Center is for a partial Glossectomy with the plan to take a 1 cm margin.  The surgeon indicated that I would lose about 10% of my tongue predicting a return to normal speech after healing.  They will also be excising lymph nodes on the side of the cancer which is on the left lateral tongue at about the midpoint.  From what I can gather, everything will be dependant on whether or not there is any lymph node involvement and clear margins.  If I get lucky, my uderstanding is that I will able to avoid any additional treatment such as radiation and/or chemo.   As an aside, I see that my biopsy results were listed as a T1N0.  One question I did not think of to ask his how they coud assign a number of N0 when no lymph nodes were biopsied.  I would assume that they would have just not mentioned that letter value as they did with the M value which was not listed. 

    I probably make the mistake of exuding a very positive, joking attitude and I was given the unsolicited pain analogy by the male nurse who works with the female surgeon.  He seemed like a salty type of guy and I probably come off the same way being a very active, successful athlete (currently the top rated 1500 meter runner in the USA in the 75+ age group).  Frotunately, I handle pain quite well.  My only concern is that my wife leaves to compete in the Triathlon World Championships two days after the surgery and I am hoping that I can handle the pain with no narcotics after I am released from the hospital in that I will be alone for about 3 days.  It is difficult to imagine being able to consume solid food with an open tongue lesion in that it is painful to eat now just with come lichen planus lesions on my tongue.  I will beat this!!

    You have the attitude needed to beat this.

    T1; N0; MO is very good. They do not suspect or see anything in lymph glands. The CT can see them and they feel your neck and can pretty much tell. Before my surgery I was T4;N2;M0; but after I was T3;N0;M0 because my lymph glands were all clear. They removed 48 on left, and 38 on right as a precaution.

    Bill