Mucoepidermoid carcinoma

dfritz
dfritz Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
My mother was just diagnosed withh Mucoepdermoid carcinoma , probable metestatic. Four years ago she was diagnosed with paratoid gland adenocarcinoma. She just noticed a spot on the back of her ear on the side of her previous cancer and I had her see a dermatologist to have it biopsied. The pathology report came back with a diagnosis of Mucoepidermoid carcinoma, probable metastatic. I am curious if there is anyone out there with similar situations. I have been reading up on this type of cancer and what i have read is that it can be excised and or radiated. however radiotherapy has not recieved very good reviews.

Please if there is someone out there with similar experiences I would be so interested in hearing what you did. this is a real shock to all of us that this has occurred and I am trying to be the level headed one in the family and try and make the best course of action for my beautiful mother.

I hope someone can give me some advise.

Comments

  • SueBIE2
    SueBIE2 Member Posts: 7
    #2
    I'm a survivor
    I'm a 40 year survivor of mucoepidermoid carcinoma of the parotid, diagnosed at age 8. One recurrance. In 1969, surgery was my only treatment. The original tumor was the size of a small orange. My doctor didn't use radiation or chemo because he didn't want to torture an 8 year old with a poor prognosis. Multiple surgeries later for reconstruction (they had to rebuild the area behind my ear and lots of lymph node biopsies, I was given a clean bill of health.
    I was even able to get a medical waiver to join the Air Force in 1982.

    40 years later, I'm still healthy and happy!
    Good luck to your mom.
  • dfritz
    dfritz Member Posts: 2
    #3
    SueBIE2 said:

    I'm a survivor
    I'm a 40 year survivor of mucoepidermoid carcinoma of the parotid, diagnosed at age 8. One recurrance. In 1969, surgery was my only treatment. The original tumor was the size of a small orange. My doctor didn't use radiation or chemo because he didn't want to torture an 8 year old with a poor prognosis. Multiple surgeries later for reconstruction (they had to rebuild the area behind my ear and lots of lymph node biopsies, I was given a clean bill of health.
    I was even able to get a medical waiver to join the Air Force in 1982.

    40 years later, I'm still healthy and happy!
    Good luck to your mom.

    thank you for your reply and
    thank you for your reply and i will certainly pass this survival story on to my mom. She is thinking the worse at this point and I try to tell her to be positive about the whole thing and I truly do not think this is going to be much a big deal. I will hope and pray that it has not metasticised and that he can get in there and remove it easily. But I can tell you that your story has really inspired me and I will most definitly pass this along and thank you for your wishes. I wish you 40 more years of health.
  • Lynndon
    Lynndon Member Posts: 1
    #4
    SueBIE2 said:

    I'm a survivor
    I'm a 40 year survivor of mucoepidermoid carcinoma of the parotid, diagnosed at age 8. One recurrance. In 1969, surgery was my only treatment. The original tumor was the size of a small orange. My doctor didn't use radiation or chemo because he didn't want to torture an 8 year old with a poor prognosis. Multiple surgeries later for reconstruction (they had to rebuild the area behind my ear and lots of lymph node biopsies, I was given a clean bill of health.
    I was even able to get a medical waiver to join the Air Force in 1982.

    40 years later, I'm still healthy and happy!
    Good luck to your mom.

    Can you tell me a bit more...
    Hi Sue
    My 12 year old son was just diagnosed on Friday 12/11. We have not been able to sleep, eat, or function in any way since that time. What a shock it was to find that a small lump in his cheek was cancer. He was diagnosed with low grade MCE. Can you recall how you and your parents got through each day without worrying each other sick? Did you have any good information to read on the low grade variety and statistic for survival, treatment options, etc.,. Right now they feel the surgery is all he needs though he has a further pathology report pending and a chest x-ray that we will get the news on next week.
    Any information you have would be greatly appreciated. I love reading your post and how you are a survivor of forty years- that gives me hope. What stage/grade were you?
    Lynndon
  • FamilyForce5
    FamilyForce5 Member Posts: 7
    #5
    My husband was just diagnosed on 11/05/09 will Mucoepidermoid cancer. I have posted our story if you want to read. My husband is scheduled for surgery on 12/21 to core out the tumor on his upper palate. If cancer is found to have spread to the sinus cavity (there was swelling on the CT scan) then they will go ahead and do the hemi maxillectomy(sp?)6 wks. of radiation to mouth and neck, and possibly chemo.

    I would love comments, advice etc......we are still in the dark about a lot of things. His cancer was in the intermediate stages back the beginning of Nov. and is being treated as high. The surgery was supposed to be 3 weeks ago, but they forgot to set up the appt. to get the prosthetic made for his upper palate. We have seen a growth in the tumor lately and I am very concerned! My husband is a 32 yr. old non-smoker and we have 3 young boys. I would appreciate hearing from anyone - we are counting down the days to surgery and I am so nervous. Anyone have any info. on how speech is affected? My boys are asking about this.
  • FamilyForce5
    FamilyForce5 Member Posts: 7
    #6
    SueBIE2 said:

    I'm a survivor
    I'm a 40 year survivor of mucoepidermoid carcinoma of the parotid, diagnosed at age 8. One recurrance. In 1969, surgery was my only treatment. The original tumor was the size of a small orange. My doctor didn't use radiation or chemo because he didn't want to torture an 8 year old with a poor prognosis. Multiple surgeries later for reconstruction (they had to rebuild the area behind my ear and lots of lymph node biopsies, I was given a clean bill of health.
    I was even able to get a medical waiver to join the Air Force in 1982.

    40 years later, I'm still healthy and happy!
    Good luck to your mom.

    Anyone out there with MEC? We are feeling so alone :(


    My husband was just diagnosed on 11/05/09 will Mucoepidermoid cancer. I have posted our story if you want to read. My husband is scheduled for surgery on 12/21 to core out the tumor on his upper palate. If cancer is found to have spread to the sinus cavity (there was swelling on the CT scan) then they will go ahead and do the hemi maxillectomy(sp?)6 wks. of radiation to mouth and neck, and possibly chemo.

    I would love comments, advice etc......we are still in the dark about a lot of things. His cancer was in the intermediate stages back the beginning of Nov. and is being treated as high. The surgery was supposed to be 3 weeks ago, but they forgot to set up the appt. to get the prosthetic made for his upper palate. We have seen a growth in the tumor lately and I am very concerned! My husband is a 32 yr. old non-smoker and we have 3 young boys. I would appreciate hearing from anyone - we are counting down the days to surgery and I am so nervous. Anyone have any info. on how speech is affected? My boys are asking about this.
  • Scambuster
    Scambuster Member Posts: 973
    #7
    FamilyForce5 said:

    Anyone out there with MEC? We are feeling so alone :(


    My husband was just diagnosed on 11/05/09 will Mucoepidermoid cancer. I have posted our story if you want to read. My husband is scheduled for surgery on 12/21 to core out the tumor on his upper palate. If cancer is found to have spread to the sinus cavity (there was swelling on the CT scan) then they will go ahead and do the hemi maxillectomy(sp?)6 wks. of radiation to mouth and neck, and possibly chemo.

    I would love comments, advice etc......we are still in the dark about a lot of things. His cancer was in the intermediate stages back the beginning of Nov. and is being treated as high. The surgery was supposed to be 3 weeks ago, but they forgot to set up the appt. to get the prosthetic made for his upper palate. We have seen a growth in the tumor lately and I am very concerned! My husband is a 32 yr. old non-smoker and we have 3 young boys. I would appreciate hearing from anyone - we are counting down the days to surgery and I am so nervous. Anyone have any info. on how speech is affected? My boys are asking about this.

    News
    Hi Family Force,

    Just following up and hoping all went well in the surgery. I Imagine you have been through a rough time but I am hoping you have a good result. It seems not so many of this forum have had your condition hence a lack or response.

    Just want to you both to know there will be a lot of people on here praying for you.

    Send news when you can.

    Regds
    Scambuster
  • carolynss
    carolynss Member Posts: 4
    #8
    FamilyForce5 said:

    My husband was just diagnosed on 11/05/09 will Mucoepidermoid cancer. I have posted our story if you want to read. My husband is scheduled for surgery on 12/21 to core out the tumor on his upper palate. If cancer is found to have spread to the sinus cavity (there was swelling on the CT scan) then they will go ahead and do the hemi maxillectomy(sp?)6 wks. of radiation to mouth and neck, and possibly chemo.

    I would love comments, advice etc......we are still in the dark about a lot of things. His cancer was in the intermediate stages back the beginning of Nov. and is being treated as high. The surgery was supposed to be 3 weeks ago, but they forgot to set up the appt. to get the prosthetic made for his upper palate. We have seen a growth in the tumor lately and I am very concerned! My husband is a 32 yr. old non-smoker and we have 3 young boys. I would appreciate hearing from anyone - we are counting down the days to surgery and I am so nervous. Anyone have any info. on how speech is affected? My boys are asking about this.

    24 yr survivor


    I had a mucoepidermoid carcinoma in 1986 when I was 17. You can see from my story that I was fortunate and mine was caught early and hadn't spread to bone. I was told that this was not an aggressive cancer. So, I am hopeful that your husband's can just be removed and then maybe some local radiation and then this will be over for you. Know that you and your family are in my prayers. I know how scary it is. But it can be defeated.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    carolynss said:

    24 yr survivor


    I had a mucoepidermoid carcinoma in 1986 when I was 17. You can see from my story that I was fortunate and mine was caught early and hadn't spread to bone. I was told that this was not an aggressive cancer. So, I am hopeful that your husband's can just be removed and then maybe some local radiation and then this will be over for you. Know that you and your family are in my prayers. I know how scary it is. But it can be defeated.

    Hi Carolynss

    Glad to have you here with us on CSN, I love to see people who have been through treatment here to help others who are just going through it themselves. There are a lot of us here who believe in the power of Prayer.

    Thanks for becoming part of the family, God bless you

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