Leukoplakia... anyone, any insight, appreciated.

Options
My mom was diagnosed with tonsil cancer (I believe T1N2b) which was HPV positive. She had neck dissection, all lymph nodes on right side removed (3 were cancerous, 1 was not encapsulated - the one not encapsulated is one she originally noticed, and it was approx 2.5" at time of removal), had raditation seeds implaned in her tonsil, 3 rounds of chemo (cisplatin), and 28 sessions of radiation. At first follow up, in March, she had PET scan and was told it was negative and she was clear and looked great. Yesterday, she had her second follow up (no PET). The doctors again looked down her throat with scopes and felt her lymph nodes in neck, etc., and said she looked great, and they really think this tonsil cancer is behind her. However, her surgeon noticed leukoplakia on her tongue. She explained to him that she had been having pain there since the treatment, and that her tongue was still swollen and she kept biting it (I was hoping, and am still hoping, that it is NOT leukoplakia, but appears that way because she was biting her tongue... wonder if this could be it? She also tried to eat a "lean cuisine" meal before going to her appts., but it was very spicy and she could not eat it - could this have caused a reaction??).

Her surgeon recommended, given her age (67) and history with this cancer (mind you, before this cancer, she was healthy - on NO medications aside from vitamins, did not drink, did not smoke, ate tons of vegetables, no red meat, all lean protein... better than me :( ) that she get it removed surgically on July 20th. He said he does NOT think it is cancerous, but it MAY be precancerous, so he feels taking it out is best. However, her radiation oncologist said she did not have to do the surgery and he recommends monitoring it and only acting if it looks problematic in the future. In truth, I got very upset because he did not give me a medically understandable reason as to why... instead, he said that most malignancies in oral leukoplakias take approx. 10 years to develop, and that only 5% of all leukoplakia is malignant, and she could live "to about 90" without a problem, "which is a long life!" I got upset - and I think it is understandable! How, and why, could you put an end date on my mom's life? If the surgery could extend her life EVEN MORE than 10 years, why WOULD HE NOT recommend it? He couldn't answer that question, except to say that leukoplakia usually comes back and she would essentially be "chasing it continually," which may result in several surgeries (which I guess could result in a substantial loss of her tongue), and again justifying it with his feeling of the "unlikelihood" that it would ever turn malignant given the low percentage that do, and if it did, that it would be 10 or so years from now.

I guess I just don't understand why he would not recommend she still get the surgery - wouldn't preemtive and preventative care be the best??? Also, I'm so concerned that this may mean a recurrence. If it is a recurrence, I'm so scared... I just am very confused, upset, and need more information.

I've read posts on this site so many times... I did not have the strength to post on here several months ago, after she was initially diagnosed (still coming to terms with everything), and did not do so when she was going through treatment because I felt like answers were being given by the doctors, and that everything I was reading helped supplement questions and concerns I had. Plus, I was happy because she was doing really well and everything with the treatment following the tonsil cancer seemed to be so positive. I'm just scared now, and I want some information from anyone who has experienced what we are going through.

Comments

  • elucibello
    elucibello Member Posts: 4
    Options
    I meant to say 2.2 cm when
    I meant to say 2.2 cm when diagnosed! Not 2.5 cm
  • katenorwood
    katenorwood Member Posts: 1,912
    Options

    I meant to say 2.2 cm when
    I meant to say 2.2 cm when diagnosed! Not 2.5 cm

    positive thoughts sent !
    Hello !
    Can't give advice on this one. Just wanted to let you know others should chime in with advice. Also bless you for being an advocate for your Mother ! It's not an easy walk. All my warmest thoughts are sent your Moms way and yours ! Good luck, Katie
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Options
    leukoplakia means " a white patch"
    and a white patch can be caused by many things. Including just biting your tongue, as you have surmised. It can also be cancer, or precancer. What has been recommended is not reasonable. And this stuff about chasing this area around is simply a bunch of hot air. Dont panic. There is plenty of time to handle this. But dont accept the advice youve already been given, either. It is time for a second opinion from someone qualified to render it. Pick another ENT oncologist. Get the records organized. And get her examined again.

    best to you


    Pat
  • hwt
    hwt Member Posts: 2,328 Member
    Options
    thrush
    Sounds very much like the thrush I am encountering. Thrush is a yeast infection. White spots in my mouth and burning tongue. Not uncommon for chemo patients.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Options
    hwt said:

    thrush
    Sounds very much like the thrush I am encountering. Thrush is a yeast infection. White spots in my mouth and burning tongue. Not uncommon for chemo patients.

    Opinion alert....
    My opinoin only ...but I certainly defer to longtermsurvior as the best to go with comment.

    So you have an ENT who would go a surgery and the Oncologist did not suggest the surgery if I read that correctly.

    Me, am type A ...I'm going for the "kill" fist time in and as for follow-up...same mentality. I always appreciate the doctors (and truly feel I have good ones) but one thing I noticed about my doctors is I don't feel as informed as I would like too...when I ask questions I don't get dismissed, but I just don't get meat and potatoes back from them (something for me to chew on solid). Like when I asked my ENT why I did not have my lymph node removed, he asked me "why would you" ...that was a bit annoying in the fact that I want you to tell me not ask me.

    Go for the 2nd opinion and a 3rd if you feel you need to. Bring your records (all) and take good notes on the questions you have and what you would do (with the understanding of your lack of knowledge vs. their, the doctors, depth of knowledge) and then let them lead you why they agree or disagree with you plan...that seems to help me get more answers and understanding.

    We may not understand our disease they way doctors do ...but our lives (and are spouses and childrens lives as well) are on the line and I like to think most doctors do try and empathize with us in that respect thus show us some patience and talk us thru this and that by giving us stats and then why they feel the way they do about our next step.

    Best,

    Tim
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Options
    I tried to pm you
    but it boinced back saying you dont accept pm. What is this about, if you know?
  • Ingrid K
    Ingrid K Member Posts: 813
    Options

    I tried to pm you
    but it boinced back saying you dont accept pm. What is this about, if you know?

    time for a change
    FIND A NEW DOCTOR...definitely get a 2nd opinion.

    don't panic, but get the records together and find another ENT, preferably at a large comprehensive cancer center.
  • elucibello
    elucibello Member Posts: 4
    Options

    I tried to pm you
    but it boinced back saying you dont accept pm. What is this about, if you know?

    I tried to send you a
    I tried to send you a private message, could you please let me know if you get it? If not, I will reply again here. I will also continue trying to figure out why messages are not reaching me. Thank you.
  • elucibello
    elucibello Member Posts: 4
    Options

    I tried to pm you
    but it boinced back saying you dont accept pm. What is this about, if you know?

    I'm not sure if I am
    I'm not sure if I am replying to the correct responses, I thought I replied to "longtermsurvivor" before, but it appears I replied to the most recent post instead? If so, that specific response was intended for "longtermsurvivor" - and, if you are reading this, did you see my post here? Did you get my response (via private message)?

    Everyone else who replied to me, thank you. It truly is so amazing to me how wonderful, supportive, helpful, and selfless everyone on this site is. It makes me feel, as I am sure it does all of you, that we are ALL a part of this FIGHT, and NONE OF US are alone... When we would go to my mom's radiation sessions with her, I was amazed by the camraderie felt there. Everyone had the same mission and goal in mind - all of the doctors, nurses, nutritionists, techs - we were all fighting, all supporting. Everyone there became such an integral, important part of our lives. You are all amazing for continuing to do that.

    Now, about my post and to clarify, the ENT surgeon is the one who found the leukplakia and who also recommended surgery. The radiologist confirmed the leukoplakia but is the one who did not recommend surgery (not the first time they have been at odds with treatment and/or diagnosis, though). Tomorrow, we meet with her oncologist (we follow up with all three doctors every three months) - and I will know more tomorrow and will update you once I have more information. But for now, thank you... thank you for responding, for your support, and for your offering of information.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Options

    I'm not sure if I am
    I'm not sure if I am replying to the correct responses, I thought I replied to "longtermsurvivor" before, but it appears I replied to the most recent post instead? If so, that specific response was intended for "longtermsurvivor" - and, if you are reading this, did you see my post here? Did you get my response (via private message)?

    Everyone else who replied to me, thank you. It truly is so amazing to me how wonderful, supportive, helpful, and selfless everyone on this site is. It makes me feel, as I am sure it does all of you, that we are ALL a part of this FIGHT, and NONE OF US are alone... When we would go to my mom's radiation sessions with her, I was amazed by the camraderie felt there. Everyone had the same mission and goal in mind - all of the doctors, nurses, nutritionists, techs - we were all fighting, all supporting. Everyone there became such an integral, important part of our lives. You are all amazing for continuing to do that.

    Now, about my post and to clarify, the ENT surgeon is the one who found the leukplakia and who also recommended surgery. The radiologist confirmed the leukoplakia but is the one who did not recommend surgery (not the first time they have been at odds with treatment and/or diagnosis, though). Tomorrow, we meet with her oncologist (we follow up with all three doctors every three months) - and I will know more tomorrow and will update you once I have more information. But for now, thank you... thank you for responding, for your support, and for your offering of information.

    I have sent you an email
    go to "My CSN Space" and click on the edit tab. There is a box on that page you can check that allows you to receive PM's.

    Pat