Mucoepidermoid of the salivary gland

cherylt
cherylt Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
If anyone has had this type of cancer (stage II), please contact me.
Thanks,
Cheryl

Comments

  • jackie7964
    jackie7964 Member Posts: 16
    #2
    Hi, Cheryl. I was just diagnosed with mucoepidermoid of the minor salivary glands earlier this month. I have had surgery and will be starting radiation therapy in February (after I heal from the surgery). My doctors have told me that mine is Stage 1, but it was in there a long time, which makes me worry. I spent almost all of last year getting the run around from a number of doctors, dentists, periodontists, etc., even a shrink (they thought I was a hypochondriac) for worrying about this lump on my tongue. I wish I had just been a hypochondriac, but oh, well, it's there, I guess I need to deal with it now. Better to find out now, right?

    Don't know what your whole story is, but would be happy to "talk" with you during our upcoming challenges. It would be nice to have company, as from what my doctors have been saying (about how rare this particular cancer is), we may be the only two people in the U.S. that have it!

    Have faith! It's pretty curable, from what I've learned!


    Jackie
  • cherylt
    cherylt Member Posts: 6
    #3
    jackie7964 said:

    Hi, Cheryl. I was just diagnosed with mucoepidermoid of the minor salivary glands earlier this month. I have had surgery and will be starting radiation therapy in February (after I heal from the surgery). My doctors have told me that mine is Stage 1, but it was in there a long time, which makes me worry. I spent almost all of last year getting the run around from a number of doctors, dentists, periodontists, etc., even a shrink (they thought I was a hypochondriac) for worrying about this lump on my tongue. I wish I had just been a hypochondriac, but oh, well, it's there, I guess I need to deal with it now. Better to find out now, right?

    Don't know what your whole story is, but would be happy to "talk" with you during our upcoming challenges. It would be nice to have company, as from what my doctors have been saying (about how rare this particular cancer is), we may be the only two people in the U.S. that have it!

    Have faith! It's pretty curable, from what I've learned!


    Jackie

    Hi Jackie,
    I can't believe that someone else actually has this. Did you have the neck dissection?
    She is going in on 2/5 for her surgery in Boston. Are you a smoker? They say it is not from
    smoking supposedly. She was going to the doctor for 4 years about pain in her neck/face. They
    finally sent her to an ENT who looked with a scope and saw it on the base of her tongue.
    Basically near her voice box in the salivary gland. Hers is in the minor salivary gland and her
    Cancer is intermediate with a stage II. I am going to print out your e-mail to give to her.
    She will be grateful to hear some of your experience with this. Supposedly, if you have low-grad
    there is a 95% success rate/ High grade no chance and she is in between that so hopefully,
    she will make it through. It seems the post-op healing is what is the worst part.
    How are you feeling now? Did you have to have it taken out via your neck?
    Well, take care,
    Cheryl
  • jackie7964
    jackie7964 Member Posts: 16
    #4
    cherylt said:

    Hi Jackie,
    I can't believe that someone else actually has this. Did you have the neck dissection?
    She is going in on 2/5 for her surgery in Boston. Are you a smoker? They say it is not from
    smoking supposedly. She was going to the doctor for 4 years about pain in her neck/face. They
    finally sent her to an ENT who looked with a scope and saw it on the base of her tongue.
    Basically near her voice box in the salivary gland. Hers is in the minor salivary gland and her
    Cancer is intermediate with a stage II. I am going to print out your e-mail to give to her.
    She will be grateful to hear some of your experience with this. Supposedly, if you have low-grad
    there is a 95% success rate/ High grade no chance and she is in between that so hopefully,
    she will make it through. It seems the post-op healing is what is the worst part.
    How are you feeling now? Did you have to have it taken out via your neck?
    Well, take care,
    Cheryl

    Hey, Cheryl! Mine was on the back of my tongue, but not as far down in the throat as your moms. They took it out through the mouth. Didn't have the neck dissection. I asked the doctor why, and he said that they hadn't seen any lymph nodes on the MRI or CAT scans. Also, I am Stage 1, due to the size and non-spread of the cancer. But it is also Intermediate Grade. The stats that I've heard on Intermediate grade are somewhat more encouraging than what your mom is hearing, I think. I have been told by three doctors now that they think they can completely cure me. One (my
    ENT) is more conservative than the others, but the radiation oncologist told me point blank that he's never had anyone die of this and didn't intend to start now. He said that he was sure he could cure it, but what he was most concerned with was the side effects of the radiation (the dry mouth thing). I'm not sure if your mom's has spread to her nodes or not, but if I were her (or you), I'd take a look at some of the information out on the National Cancer Institute web page regarding the cancer and see if you don't find some more positive information. It's a shame that it sat in there for so long without being discovered.
  • jackie7964
    jackie7964 Member Posts: 16
    #5
    cherylt said:

    Hi Jackie,
    I can't believe that someone else actually has this. Did you have the neck dissection?
    She is going in on 2/5 for her surgery in Boston. Are you a smoker? They say it is not from
    smoking supposedly. She was going to the doctor for 4 years about pain in her neck/face. They
    finally sent her to an ENT who looked with a scope and saw it on the base of her tongue.
    Basically near her voice box in the salivary gland. Hers is in the minor salivary gland and her
    Cancer is intermediate with a stage II. I am going to print out your e-mail to give to her.
    She will be grateful to hear some of your experience with this. Supposedly, if you have low-grad
    there is a 95% success rate/ High grade no chance and she is in between that so hopefully,
    she will make it through. It seems the post-op healing is what is the worst part.
    How are you feeling now? Did you have to have it taken out via your neck?
    Well, take care,
    Cheryl

    BTW, I am not a smoker, but have smoked for a couple years in the distant past. I'm 36 right now, and my smoking years were in college. What I've read is that this cancer is most often caused by exposure to radiation (the only thing I can think of is either radon or my cell phone that would have exposed me to radiation), and sometimes silica dust and a diet high in animal fats. Don't know where I would have gotten into silica dust (other than some makeup and powders), but my diet is probably not the best.
  • cherylt
    cherylt Member Posts: 6
    #6
    jackie7964 said:

    BTW, I am not a smoker, but have smoked for a couple years in the distant past. I'm 36 right now, and my smoking years were in college. What I've read is that this cancer is most often caused by exposure to radiation (the only thing I can think of is either radon or my cell phone that would have exposed me to radiation), and sometimes silica dust and a diet high in animal fats. Don't know where I would have gotten into silica dust (other than some makeup and powders), but my diet is probably not the best.

    Hi Jackie,
    I believe she is having a radical neck. They will break her jaw and go in through the side of her neck.
    She is having it done on Monday morning. I will keep you posted next week on her recovery
    period. She does have some lymph node involvement and they will know more after the
    surgery.
    Take care,
    Cheryl
  • jackie7964
    jackie7964 Member Posts: 16
    #7
    cherylt said:

    Hi Jackie,
    I believe she is having a radical neck. They will break her jaw and go in through the side of her neck.
    She is having it done on Monday morning. I will keep you posted next week on her recovery
    period. She does have some lymph node involvement and they will know more after the
    surgery.
    Take care,
    Cheryl

    I wish her the best, and will be praying for her over the weekend and on Monday.
  • madison
    madison Member Posts: 3
    #8
    cherylt said:

    Hi Jackie,
    I can't believe that someone else actually has this. Did you have the neck dissection?
    She is going in on 2/5 for her surgery in Boston. Are you a smoker? They say it is not from
    smoking supposedly. She was going to the doctor for 4 years about pain in her neck/face. They
    finally sent her to an ENT who looked with a scope and saw it on the base of her tongue.
    Basically near her voice box in the salivary gland. Hers is in the minor salivary gland and her
    Cancer is intermediate with a stage II. I am going to print out your e-mail to give to her.
    She will be grateful to hear some of your experience with this. Supposedly, if you have low-grad
    there is a 95% success rate/ High grade no chance and she is in between that so hopefully,
    she will make it through. It seems the post-op healing is what is the worst part.
    How are you feeling now? Did you have to have it taken out via your neck?
    Well, take care,
    Cheryl

    Last year I was diagnosed with tongue cancer and it spread to the lymphnodes in my neck. I am only 22 years old and have found no one else to talk to. My cancer was stage III and I am doing good right now. If you do get the neck dissection it takes awhile for swelling and stiffness to go down but it does gradually go away. I was stage III and I survived. If you ever want someone to talk to you can always talk to me.
  • jackie7964
    jackie7964 Member Posts: 16
    #9
    madison said:

    Last year I was diagnosed with tongue cancer and it spread to the lymphnodes in my neck. I am only 22 years old and have found no one else to talk to. My cancer was stage III and I am doing good right now. If you do get the neck dissection it takes awhile for swelling and stiffness to go down but it does gradually go away. I was stage III and I survived. If you ever want someone to talk to you can always talk to me.

    Hi, Madison! I'm glad you did so well. What kind of tongue cancer did you have? Were/are you a smoker? The kind I had was a weird one that isn't related to smoking or drinking--just hits out of the blue, I guess, or can be caused by exposure to radiation (which I can't think I was exposed to). Did you end up having radiation or chemo?

    I'm sorry it hit you so young, and that you have no one else to talk to--I think people feel kind of strange when they're confronted with someone so young with cancer.

    Did you find that for a while you were paranoid about every lump or bump you had in your mouth? I'm going through that right now--everytime I feel anything remotely weird in my mouth, I worry that it's some kind of bad lump. While making sure to do self breast exams is getting a lot of press these days (and rightly so), I am the only person I know who does self tongue and mouth exams! I would be very happy if this paranoia ended soon.
  • dkeats
    dkeats Member Posts: 11
    #10
    cherylt said:

    Hi Jackie,
    I can't believe that someone else actually has this. Did you have the neck dissection?
    She is going in on 2/5 for her surgery in Boston. Are you a smoker? They say it is not from
    smoking supposedly. She was going to the doctor for 4 years about pain in her neck/face. They
    finally sent her to an ENT who looked with a scope and saw it on the base of her tongue.
    Basically near her voice box in the salivary gland. Hers is in the minor salivary gland and her
    Cancer is intermediate with a stage II. I am going to print out your e-mail to give to her.
    She will be grateful to hear some of your experience with this. Supposedly, if you have low-grad
    there is a 95% success rate/ High grade no chance and she is in between that so hopefully,
    she will make it through. It seems the post-op healing is what is the worst part.
    How are you feeling now? Did you have to have it taken out via your neck?
    Well, take care,
    Cheryl

    Hi!
    I, too, am a survivor of muco-epidermoid cancer. I posted a somewhat long response to b4giving in the head and neck forum. I had this cancer 6 years ago and then a re-occurance this past May. You might want to go read it and see if there's any help there. Mine was high grade, stage III and I'm still hanging in there! IF I can be of any help, please ask!
    Marilyn
  • fox
    fox Member Posts: 2
    #11
    Hi!

    I had the same tumor... how much time ago?

    fox
  • Rhinonixx
    Rhinonixx Member Posts: 6
    #12
    jackie7964 said:

    Hi, Madison! I'm glad you did so well. What kind of tongue cancer did you have? Were/are you a smoker? The kind I had was a weird one that isn't related to smoking or drinking--just hits out of the blue, I guess, or can be caused by exposure to radiation (which I can't think I was exposed to). Did you end up having radiation or chemo?

    I'm sorry it hit you so young, and that you have no one else to talk to--I think people feel kind of strange when they're confronted with someone so young with cancer.

    Did you find that for a while you were paranoid about every lump or bump you had in your mouth? I'm going through that right now--everytime I feel anything remotely weird in my mouth, I worry that it's some kind of bad lump. While making sure to do self breast exams is getting a lot of press these days (and rightly so), I am the only person I know who does self tongue and mouth exams! I would be very happy if this paranoia ended soon.

    Hi Jackie,
    I developed Mucoepidermoid under my left upper lip in 1997. I lost my nose in Nov 2000 and 4 teeth and part of my palate and had to have a graft put into the center of my face in Jun 2002. I worked in front of a computer with the standard CRT monitor (unshielded - my present monitor has an ALLSOP radiation screen on it)for 5 years when this tumor appeared out of nowhere. Cathode Ray Tubes (CRTs)put out Pulsed Electo Magnetic Radiation. I found a web site that addressed the problem with necrosis in micro organisms that were were placed in close proximaty to the screen. I think this may be what caused mine, however I never heard anyone ever admit that radiation was a cause of this type of cancer. Where did you hear that radiation caused this type of cancer? I would love to know. Please drop a line here or at Rhinonixx@aol.com.
    God Bless,
    Randy
  • jackie7964
    jackie7964 Member Posts: 16
    #13
    fox said:

    Hi!

    I had the same tumor... how much time ago?

    fox

    Hi, Fox!

    Sorry it's been such a delay in my responding to you. I sort of lost track of the CSN bulletin board. Which is a good thing, I guess. :-)

    My cancer was surgically treated in January 2001, and I've been okay since then. So, about 3.5 years. I'm looking forward to hitting that 5-year mark, although my ENT has pretty much already told me that he thinks it's been cured.

    I was very fortunate--didn't need radiation, and the surgery was pretty easy to deal with, since it was caught when the tumor was still small (mostly because I didn't worry about the doctors thinking I was an annoying pain-in-the butt and kept going back and pestering them about it even though they kept assuring me that my painful tongue lump "was nothing to worry about").

    How are you doing? How long has it been for you?

    Hope you're well,

    Jackie
  • jackie7964
    jackie7964 Member Posts: 16
    #14
    Rhinonixx said:

    Hi Jackie,
    I developed Mucoepidermoid under my left upper lip in 1997. I lost my nose in Nov 2000 and 4 teeth and part of my palate and had to have a graft put into the center of my face in Jun 2002. I worked in front of a computer with the standard CRT monitor (unshielded - my present monitor has an ALLSOP radiation screen on it)for 5 years when this tumor appeared out of nowhere. Cathode Ray Tubes (CRTs)put out Pulsed Electo Magnetic Radiation. I found a web site that addressed the problem with necrosis in micro organisms that were were placed in close proximaty to the screen. I think this may be what caused mine, however I never heard anyone ever admit that radiation was a cause of this type of cancer. Where did you hear that radiation caused this type of cancer? I would love to know. Please drop a line here or at Rhinonixx@aol.com.
    God Bless,
    Randy

    Hey, Randy! Just happened to be passing thru the CSN boards and noticed your post. Glad that you're doing well now, although I'm so sorry that you had such a tough time of it at first.

    I heard about the radiation connection when I asked my ENT however I might have gotten the cancer. I'm young (well, I FEEL young, anyway--I just turned 40, but the tumor appeared when I was just 35), a non-smoker, no family history, etc. His reply was, "Well, have you ever been around radiation?" Since I really hadn't been thinking about CRTs or cell phones (both of which I used frequently due to my job), I pretty much wrote it off as a fluke. Just my bad luck, ya know? But maybe there's something to it.

    Anyway, thanks for your post, and hope you're continuing to beat the disease!

    Take care,

    Jackie
  • Bobzcat
    Bobzcat Member Posts: 1
    #15
    jackie7964 said:

    Hi, Fox!

    Sorry it's been such a delay in my responding to you. I sort of lost track of the CSN bulletin board. Which is a good thing, I guess. :-)

    My cancer was surgically treated in January 2001, and I've been okay since then. So, about 3.5 years. I'm looking forward to hitting that 5-year mark, although my ENT has pretty much already told me that he thinks it's been cured.

    I was very fortunate--didn't need radiation, and the surgery was pretty easy to deal with, since it was caught when the tumor was still small (mostly because I didn't worry about the doctors thinking I was an annoying pain-in-the butt and kept going back and pestering them about it even though they kept assuring me that my painful tongue lump "was nothing to worry about").

    How are you doing? How long has it been for you?

    Hope you're well,

    Jackie

    I've just been diagnosed with mucoepidermoid cancer in a minor salivary gland, it has metastasized to the lymph gland on the right side of my neck. I'm still in the diagnosis stage and am scheduled for an FNA tomorrow to try for a definitive diagnosis of lung nodules. I had a PET scan last week that showed the cancer in my SGs and lymph node but showed negative for my lungs. My doctors are being ultra-conservative, thus the FNA. Does anyone out there have experience with lymph node metastasis? Or with suspicous lung nodules?
  • HarveyT
    HarveyT Member Posts: 2
    #16
    Bobzcat said:

    I've just been diagnosed with mucoepidermoid cancer in a minor salivary gland, it has metastasized to the lymph gland on the right side of my neck. I'm still in the diagnosis stage and am scheduled for an FNA tomorrow to try for a definitive diagnosis of lung nodules. I had a PET scan last week that showed the cancer in my SGs and lymph node but showed negative for my lungs. My doctors are being ultra-conservative, thus the FNA. Does anyone out there have experience with lymph node metastasis? Or with suspicous lung nodules?

    Bob,
    I've got mucoepidermoid cancer in my right salivary gland with metastasis to the nearby lymph nodes as well as the lung, liver, and bony areas. My understanding is that PET/CT scans are notorious for erroneous results. Don't waste a single day with your diagnosis. If you do have spread, your options are basically chemo only and a very poor prognosis. If it's contained, you have a decent chance but only with aggressive surgery and probably followup radiation and/or chemo. Best of luck to you.
    Harvey
  • cjkraker
    cjkraker Member Posts: 3
    #17
    dkeats said:

    Hi!
    I, too, am a survivor of muco-epidermoid cancer. I posted a somewhat long response to b4giving in the head and neck forum. I had this cancer 6 years ago and then a re-occurance this past May. You might want to go read it and see if there's any help there. Mine was high grade, stage III and I'm still hanging in there! IF I can be of any help, please ask!
    Marilyn

    mucoepidermoid survivor
    Just wondering how you are doing and what your treatment was. My husband is fighting the same thing, high grade also. Do you have any suggestions? He has had 3 surgerys so far and now it is surface blisters. We have been to Ohio State University Cancer Center but not sure what more to do.
  • cjkraker
    cjkraker Member Posts: 3
    #18
    Bobzcat said:

    I've just been diagnosed with mucoepidermoid cancer in a minor salivary gland, it has metastasized to the lymph gland on the right side of my neck. I'm still in the diagnosis stage and am scheduled for an FNA tomorrow to try for a definitive diagnosis of lung nodules. I had a PET scan last week that showed the cancer in my SGs and lymph node but showed negative for my lungs. My doctors are being ultra-conservative, thus the FNA. Does anyone out there have experience with lymph node metastasis? Or with suspicous lung nodules?

    How are you doing now?

    How are you doing now?
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #19
    cjkraker said:

    How are you doing now?

    How are you doing now?

    Cjkraker
    Hi there. I'm thinking that you will probably not get a response from any of the posters here, because this thread is 11 years old, almost. There are people here with Mucoepidermoid cancers, you can try to send them a private message, or you can start a new thread with a more specific question, and I'm am sure that you will get more help that way. I think the following are MEC survivors, Tommyodavey, ekdennie, kingcole42005, LTRII, ajerger, VancouverGirl, deb e19, there might be more, but I cannot think of them right now. They do not post often, but you might try. Also, a lot of us have different cancers, but have all gone through many similarities with our treatments, so depending on your issue or question, someone else may be able to help, even if they didn't have MEC.

    If you need any help posting a new thread, or sending a private message, just let me know.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #20
    sweetblood22 said:

    Cjkraker
    Hi there. I'm thinking that you will probably not get a response from any of the posters here, because this thread is 11 years old, almost. There are people here with Mucoepidermoid cancers, you can try to send them a private message, or you can start a new thread with a more specific question, and I'm am sure that you will get more help that way. I think the following are MEC survivors, Tommyodavey, ekdennie, kingcole42005, LTRII, ajerger, VancouverGirl, deb e19, there might be more, but I cannot think of them right now. They do not post often, but you might try. Also, a lot of us have different cancers, but have all gone through many similarities with our treatments, so depending on your issue or question, someone else may be able to help, even if they didn't have MEC.

    If you need any help posting a new thread, or sending a private message, just let me know.

    Memory
    Sweetblood22, Your memory of who's had what is amazing. My driving cap is tipped to you!

    Cjkraker,

    I have Mucoepidermoid Carcinoma of the base of my tongue (tumor removed a month ago), and it metastasized to my right lymph node. That is my next surgery, to remove the lymph node and all those surrounding it. Lucky for me it is slow growing and is why the 2nd surgery was put off until after Christmas. I just asked if it was okay to enjoy the holiday as Thanksgiving was ruined. Of course now I'm regretting asking for that. I want the cancer out of me ASAP.

    E-mail me or use PM to contact me if you need to chat. My e-mail is: freeon2@yahoo.com

    Tommy

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