Mucoepidermoid Carcinoma Low Grade

245

Comments

  • jen2609
    jen2609 Member Posts: 14
    #22
    Hi Mary!

    Hi Mary!

    Thank you :).  Was a huge weight off my mind.  The fistula is healing well and unexpectedly may heal completely overtime.  If not the surgeon has recommended trying a permanent obturator rather than surgery to close the gap.  The obtuator I have just now is rubbish but apparently this is just a temporary one!  I'm in the UK and over here, for me anyway, I have only ever met with the surgeon but he consults with a multidisciplinary team.  So I haven't actually met the oncologist but he is part of that multidisciplinary team and wrote reports following my scan and surgery.  As I don't need further treatment I will not need to meet with the oncologist but not sure if it is different for other people? 

  • Mom68
    Mom68 Member Posts: 108 Member
    #23
    Thanks, Jen!

    Sorry it has taken so long for me to reply to you. That is so neat that you get that whole interdisciplinary approach to your treatment. Mine has been the 2 surgeons and my primary. I'm so happy to know that your fistula is healing nicely. I sure hope and pray it seals up completely. I look forward to being declared "cancer free" after my surgery, which has finally been scheduled for the 22nd of June. I just wish I could get the breast growth business over with. It keeps knocking on the door of my reality. I've had the mammogram, the ultrasound and the breast MRI. The MRI results should be coming this week. Phew! You know, I'm just taking it one day at a time with that bit. 

    On another note, I have my final appointment with the surgeon the 19th. Any advice on what I should ask prior to surgery? Yogi Bear gave me some really great advice. He suggested asking the surgeon to show me where the skin will be removed. That will be a great visual for me. Any other ideas?

    Thanks to all of you. We are not alone in this and we'll get through this. God Bless...Mary

  • Mom68
    Mom68 Member Posts: 108 Member
    #24
    Have to Share Breast MRI Results Here

    So, it looks as though my breast MRI was okay. It showed "no discrete masses are evident." It says to follow up in 6 months for another mammogram. So, Yay! Yippee!!! Normally, I'd edit these exclamation points, but I'm very excited about this result. This narrows my life down to one, count it, ONE cancer. Yay! So, meeting with the surgeon on the 19th, surgery on the 22nd. Phew! Breathing now....

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #25
    Add One More

    I just wanted to post into this thread that I too had MEC, base of tongue.  My DX was completely different than yours so my opinion may not have any bearing.  Just a simple note to say we are a small group here with this rare type of oral cancer.  My complete story can be read by clicking my profile.

    Heal quickly!

  • LC2313
    LC2313 Member Posts: 16
    edited June 2017 #26
    LC

    Sorry , it's taken so long to reply. I was declared cancer free on my first follow up after the doc read all the final patholgy reports.... What a relief that was ! No Chemo or radiation !!!! I am at 2 months and things seem to be healing... I opted for no temp obtuator ( it was a pain and bothersome). Doc seems to think fistula will heal complelety. It went from 5mm to 2mm... we will see on the next follow up which is JULY. After that if all is progressing well, we will set up follow ups in 6 months time. Good Luck to everyone !

     

  • Mom68
    Mom68 Member Posts: 108 Member
    edited June 2017 #27
    Weekend Before Surgery

    Thanks for replying, LC! That is so awesome about being cancer free. I cannot wait to hear those words. Please keep us posted on how you heal. I pray that the fistula heals very well, very soon. How has the skin healed from the silver dollar sized removal? 

    Hi Tommyodavey! I read your page when I first checked out this site. I noticed that you're also from Las Vegas? We're locals. It'll be 115 this week! Phew! I can deal with the temp up to 106, but beyond that, I'm a hobbit, living indoors. I saw that your picture is of a motorcycle. My hubby was involved in a hit and run on his bike about a month ago. The person who hit him left him with a broken leg and a totalled bike. He's up and walking again, thank God! 

    Cannot wait for my surgery to be over with this Thursday. This is a pretty rare cancer indeed. I think we're the only ones on here currently. God Bless you all. We've got this! 

  • Mom68
    Mom68 Member Posts: 108 Member
    #28
    Surgery Tomorrow

    I have to admit I'm a bit nervous. Surgery is tomorrow. Phew! I probably won't sleep a bit tomorrow. It'll be interesting, as the surgeon said the hospital here has "real time" pathology. So, what she'll do is cut around the margins she wants to aim for and have them tested immediately to make sure those are the correct margins. Then, she'll complete the surgery. Fingers crossed. Wish me luck! Best Wishes to you all...Mary

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #29
    How Are You?

    Hi Mom68,

    How about an update when you feel up to it?  Did you get clear margins or not?  Got my fingers crossed hoping the best for you.

    Tom

  • Mom68
    Mom68 Member Posts: 108 Member
    #30
    I'm okay

    A quick drug addled update: surgery done and am home. The surgeon sutured a huge bandage on the roof of my mouth. Makes me cough a lot. But! The initial pathology showed NO CANCER. Yay! So, on to healing. I see the doc in a week to get the bandage out. Blessings to you all. Mary

  • Mom68
    Mom68 Member Posts: 108 Member
    edited June 2017 #31
    Do I have a fistula?

    Okay, I have a call into the doctor about this, but...now when I swallow water comes out my nose. And I can't hold my breath. Do I have a fistula? It sure sounds like it. 

  • jen2609
    jen2609 Member Posts: 14
    #32
    No Cancer!

    Mary - Glad to hear your initial pathology showed no cancer, that is amazing!  Also impressed at how quickly you got that news as I had to wait 4 weeks for pathology results.  It sounds like you have a fistula, but your doctor will be best placed to discuss this with you.  I hope you heal well and recover quickly :).

    Take care,

    Jen x

  • Mom68
    Mom68 Member Posts: 108 Member
    #33
    jen2609 said:

    No Cancer!

    Mary - Glad to hear your initial pathology showed no cancer, that is amazing!  Also impressed at how quickly you got that news as I had to wait 4 weeks for pathology results.  It sounds like you have a fistula, but your doctor will be best placed to discuss this with you.  I hope you heal well and recover quickly :).

    Take care,

    Jen x

    Pathology

    Yeah, apparently they test the margins the surgeon wants to take and pathology either affirms them or recommends taking more. With mine, they recommended more. So I've had 2cm taken out, no bone though. Final pathology should be ready in a week. Also, she didn't want to use the word "fistula" so she used "sinuses" something  (can't remember what term). It's a fistula. She said it is tiny and should heal in a week. I'll believe it when I feel it. Overall, life is good. I'm coming off the medicine and will see how much pain I'm actually in. I'm very grateful for you all. Warmest regards,  Mary 

  • jen2609
    jen2609 Member Posts: 14
    #34
    Fistula

    Let us know how the final pathology results go!  It's amazing how quickly my fistula has been healing and I had bone removed.  It's really small now but unfortunately not quite small enough to stop liquids pouring out my nose.  Hopefully yours will heal completely, as my surgeon was really surprised that mine has shrunk as much as it has.  Our bodies can do amazing things.  

    I had an appointment earlier this week and I asked more questions about the final pathology results as I didn't understand everything last time.  It was a grade 1 tumour, so that's the best possible result.  So that's me for 6 months then I'll have an MRI scan. i've finally managed to give up googling worst case scenarios and feel a bit more positive.  Glad we all found each other on here.  It's been good to find people who understand!  

    Jen 

     

  • Mom68
    Mom68 Member Posts: 108 Member
    #35
    Update

    I've been so grateful to you all and for this forum. Grade 1 tumor? That's awesome! 

    My check up is tomorrow...it'll be one week ago today I had the surgery. So, I should be receiving final pathology tomorrow, along with my plan of action. My big thing has been the section that the surgeon cut out around the right top of my mouth. My wisdom tooth and the tooth next to it on the right side are now very exposed, as she had to cut a lot of skin from there. So, that will be painful just do to the exposure. I'm taking Ibuprofen right now. I have pain meds, but I try to hold off on those unless I really need them. 

    As for the fistula, I have to really work to keep any liquid out of the roof of my mouth, or it will come out my nose. Not fun.

    And the talking? It is so hard for people to understand me. I haven't ventured out and spoken with people yet, as I'm too embarrassed. When my own family can't understand me, I don't think others will. 

    What foods were you all able to eat? I'm doing Boost and smoothies. Best Wishes...Mary

  • jen2609
    jen2609 Member Posts: 14
    #36
    Talking and eating

    I had initial difficulties with people understanding what I was saying, as my speech was nasal sounding, even with the obturator in.  It's improved a lot though and I'd say with the obturator in I don't sound any different now to how I did before surgery.  I found that the more I spoke, the clearer my speech became.  Even without the obturator now people can understand what I'm saying - I just sound like I'm blocked up / have the cold.   

    I am able to eat most foods now, but initially I could only handle soup, smoothies, yogurt etc.  

  • Mom68
    Mom68 Member Posts: 108 Member
    #37
    Pathology

    Finally! The surgeon finally called today with pathology results. I am officially CANCER FREE!!!!!!!!!! Soooooo thrilled!

    Initially, she cut 1cm out of my mouth and sent it to pathology at the hospital, but they saw the expected cancer in there, but it was deeper than they thought. So, she ended up cutting out 3cm, thus causing my fistula. The second round of pathology found no cancer. And then they did final pathology, which found no cancer, and certainly no spread to the nodes or nerves. 

    So, now, time for healing and celebrating. I don't know if I told you all or not, but she had to remove all the skin up to the bone. So now I have all the bone showing in the middle roof of my mouth and right side of my mouth. Its not too bad, but there is the fistula/deep hole and then another hole to the left of center of the roof of my mouth where I have to keep stuff out of. By stuff I mean liquids. I haven't eaten anything solid or soft yet. But as we all know, the mouth heals quickly, so hopefully stuff will start to seal up fairly soon. 

    Oh, and she said that if my fistula doesn't heal well, she'll probably fit me for an obturator this week. 

    Best Wishes...Mary

  • caregiver wife
    caregiver wife Member Posts: 234
    #38
    The waiting is the worst!

    So glad you got such wonderful news!!

    Wishing you a SPEEDY recovery!

    Crystal

  • LC2313
    LC2313 Member Posts: 16
    #39
    update

    my fistula is down to 1mm after 3 months post op. Doc is doing another CT scan because some lymph nodes in my neck are a little swollen. Nerves set in till I get the results! He said he wants to make sure all is ok. The waiting game starts again and it's so nerve wrecking. Praying all is ok. 

  • jen2609
    jen2609 Member Posts: 14
    #40
    LC2313 said:

    update

    my fistula is down to 1mm after 3 months post op. Doc is doing another CT scan because some lymph nodes in my neck are a little swollen. Nerves set in till I get the results! He said he wants to make sure all is ok. The waiting game starts again and it's so nerve wrecking. Praying all is ok. 

    CT Scan

    Praying all goes ok for you!! I'm almost 3 months post op and was initially asked to go for a follow-up MRI scan of my head/neck & chest in December 2017 but now I've got to go for a chest CT scan next week. So I'm a bit nervous too, but hopefully all will be well for the both of us :). Let us know how you get on.  

  • Mom68
    Mom68 Member Posts: 108 Member
    edited July 2017 #41
    Praying for you both, Jen and LC

    God Bless you both, Jen and LC! I'll be praying for you both. I'm sorry I haven't checked this in a few days. LC, have you had the CT scan yet? When is it? Jen, when is your chest CT scan next week? I'll be sure to pray, especially when you all are getting the scans done. On a good note, the doctors are taking really good care of you both, in that if they see/feel anything, they want to get it checked. Jen, why did they ask for the chest scan, if I may ask? 

    Warmest wishes, Mary

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