Hi I have Low Grade Mucoepidermoid Carcinoma, Stage 2

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Mom68
Mom68 Member Posts: 108 Member
edited May 2017 in Head and Neck Cancer #1

Hi Everyone. I had surgery to remove a growth on my soft palate on the right side. That was 4/10/2017. The surgeon sent it off to pathology and he told me I had mucoepidermoid carcinoma (MEC) on 4/17. I'm 48, BTW. I've met with the 2nd surgeon, the one who will do a wider excision, and she has ordered 2 CT scans. So far, no further cancer has been noted. She wants to do a PET scan to make sure of no further cancer, and then we'll set the surgery date. Any thoughts? Any advice? The surgeon has told me that no radiation nor chemo should be needed and no nodes will need to be removed, so far as we know right now. Approximately 1cm will be removed to establish margins, so I'm told. I had a hole in the roof of my mouth at 2mm (from the initial surgery) and thought, "well, this is terrible!" HA! Right. 1cm to go! But honestly, after reading some of the threads on here, I feel very lucky about my diagnosis overall. From people who have had surgery on the palate, how was the recovery? Did the hole ever seal back up? Did people get fitted for obturators? Did the palate recover? Does food taste the same? How long were you all on a liquid/soft food diet? Anything else folks would like to share? Or any reading material you would recommend? Thanks in advance for your time. 

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  • Mom68
    Mom68 Member Posts: 108 Member
    edited May 2017 #2
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    What is the average recovery time from surgery?

  • ken12
    ken12 Member Posts: 4
    #3
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    Mom68 said:

    What is the average recovery time from surgery?

    Hi, you will need almost 8

    Hi, you will need almost 8 months to recover ,  to fill in the "" hole"" is amazing what our body can do ,  you will have some hard time to drink fluids , takes time , you will be all most the same , with taste buds  and smell , we had our surgery almost  3 years ago we are past recovery and we hope for the best , from now and on , all the best  ,you aren't alone here 

  • Mom68
    Mom68 Member Posts: 108 Member
    #4
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    Thanks!

    Oh! Thank you for replying! I hope the PET scan shows no spread, and I "just" have surgery. A bit scared but other people have gone through far worse. Bless you for replying. I'm so glad I found this site. God bless, Mary

  • Mom68
    Mom68 Member Posts: 108 Member
    edited May 2017 #5
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    Ken12

    And honestly, after rereading your comments, I'm so glad to read that you are cancer free and living your life again for 3 whole years! Amen! That really warms my heart, and I'm sure yous and your family's as well! :) God Bless you...and congratulations on being cancer free! NED...here we ALL COME! 

  • LC2313
    LC2313 Member Posts: 16
    #6
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    8 Months

    I just had my surgery on 4/7/17... I had MEC Low Grade (No stage) I do have a hole in my soft palate. I also have 2 oronasal fistulas. WOW 8 months to fully heal. I am just praying that my oronasal fistual closes ... I have two about 1-2MM.

    Thats awesome to hear that 3 years cancer free... this scares the crap out of me but I refuse to let it bring me down.

     

  • Mom68
    Mom68 Member Posts: 108 Member
    #7
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    Healing Time

    LC, did you have bone removed? Or did the surgery on the soft palate compromise the nasal cavity? 

  • Mom68
    Mom68 Member Posts: 108 Member
    #8
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    Also...

    I had the PET Scan and it allowed me to be staged T1N0M0...meaning Tumor stage 1, no nodes and no metastasizing. So, yay! The scan did find a growth on my breast that needs to be checked out, so I'm going for a diagnostic mammogram tomorrow (hoping nothing arises from that).  The surgeon wants to do surgery to establish clear margins after my daughter gets out of school (I'm the mommy "limo driver" for her), so that should be mid June. 

  • Yogi_Bear12
    Yogi_Bear12 Member Posts: 7
    #9
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    Also wondering of recovery time. Had 1 cm margins cut out two weeks ago. No effect on nasal cavity at all. Wound is getting a little better everyday and also appears better. Have a toothache that comes and goes, more comes than goes lol. It is managed by ibuprofen at the moment. Not sure if toothache was related to trauma of the surgery or not so called my surgeon's office. They said that it wasn't related, which I find odd since I have no cavities and take good care of my teeth. I'm sure its different for everyone, but does someone have a time frame of how long this darn hole will fill in completely or atleast not effect my speech anymore. I've moved on from soft foods only to softer "normal" foods. No palatal retainer thingy anymore. That was removed after 7 days. Thanks all and good luck

  • Mom68
    Mom68 Member Posts: 108 Member
    #10
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    Had Toothache as Well

    Hi Yogi! I had a toothache where the initial growth was removed. I think it was related to the surgery, even though my initial surgeon said it wasn't related as well. It also comes and goes. From what I've read on this site, I gathered that others had similar issues related to their surgeries. The general comments were that it takes time to heal and different people have different issues. I think my "toothache" is actually where the nerves were exposed. 

    Have you gotten your pathology after getting your 1cm margins cut out? Best wishes to you all...we've got this! Mary

  • Tallkidsmom
    Tallkidsmom Member Posts: 9
    #11
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    Yogi_Bear12 said:

    Also wondering of recovery time. Had 1 cm margins cut out two weeks ago. No effect on nasal cavity at all. Wound is getting a little better everyday and also appears better. Have a toothache that comes and goes, more comes than goes lol. It is managed by ibuprofen at the moment. Not sure if toothache was related to trauma of the surgery or not so called my surgeon's office. They said that it wasn't related, which I find odd since I have no cavities and take good care of my teeth. I'm sure its different for everyone, but does someone have a time frame of how long this darn hole will fill in completely or atleast not effect my speech anymore. I've moved on from soft foods only to softer "normal" foods. No palatal retainer thingy anymore. That was removed after 7 days. Thanks all and good luck

    Toothache

    I'm a dental hygienist, and we frequently have patients who present with tooth pain or aching when their sinuses are full of nastiness. The roots of your upper molars typically are very close to where the floor of the sinus is. Until the sinus 'issue' is under control, the teeth might be tender to biting pressure and cold. We usually don't get worried about a tooth until it's sensitive to heat. 

     

    Just my 2 cents worth; but here's hoping things will resolve as treatment progresses. 

  • Yogi_Bear12
    Yogi_Bear12 Member Posts: 7
    #12
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    Tallkidsmom said:

    Toothache

    I'm a dental hygienist, and we frequently have patients who present with tooth pain or aching when their sinuses are full of nastiness. The roots of your upper molars typically are very close to where the floor of the sinus is. Until the sinus 'issue' is under control, the teeth might be tender to biting pressure and cold. We usually don't get worried about a tooth until it's sensitive to heat. 

     

    Just my 2 cents worth; but here's hoping things will resolve as treatment progresses. 

    Thanks

    Thank you for your response TallKidsMom. I appreciate your insight and what you are saying makes sense. Funny thing is I noticed my teeth being sensitive a day or two before the toothache came on strong. It has come and gone and definetly getting better. Today has been the best day so far. Definetly sensitive to cold, not hot

  • Yogi_Bear12
    Yogi_Bear12 Member Posts: 7
    edited May 2017 #13
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    Mom68 said:

    Had Toothache as Well

    Hi Yogi! I had a toothache where the initial growth was removed. I think it was related to the surgery, even though my initial surgeon said it wasn't related as well. It also comes and goes. From what I've read on this site, I gathered that others had similar issues related to their surgeries. The general comments were that it takes time to heal and different people have different issues. I think my "toothache" is actually where the nerves were exposed. 

    Have you gotten your pathology after getting your 1cm margins cut out? Best wishes to you all...we've got this! Mary

    Thanks

    MOM68 (Mary), Thank you for your response. Toothache has come an gone here too, definetly feel like it has been improving though. Today was the best day yet. My initial thought was that one of the tooth's nerves were exposed or the area was just traumatized by the surgery so thats why my teeth were acting up. Thank you for your resonse.

    As for my pathology report, all tissue that was removed was cancer free. Best wishes to you as well!  - Nick

  • LC2313
    LC2313 Member Posts: 16
    #14
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    Mom68 said:

    Healing Time

    LC, did you have bone removed? Or did the surgery on the soft palate compromise the nasal cavity? 

    Healing

    I had no bone removed and the cancer luckily did not reach my nasal cavity.

  • Mom68
    Mom68 Member Posts: 108 Member
    #15
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    LC2313 said:

    Healing

    I had no bone removed and the cancer luckily did not reach my nasal cavity.

    Thanks, LC!

    Thanks for commenting, LC! I'm gearing up for my surgery now. My daughter finishes school on June 8th, and then I'll be free to have the surgery. Right now, the office is battling it out with insurance to get the surgery approved. Fun, huh? Oh no, insurance company, let's just leave the cancer in there, that'll be fine. *sigh*

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