MY RARE CANCER recently diagnosed

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mjdouty
mjdouty Member Posts: 6
edited March 2014 in Head and Neck Cancer #1
I was diagnosed with sinonasal mucosal melenoma. Statistics are few. I had a continuing sinus infection on one side of my face then was finally sent for endoscopic surgery and path came back this cancer. Shock to both me and surgeon. Oncology head and neck surgeon to do cranial facial sinus obliteration in 2 days. Yes it's as bad as it sounds. Survival statistics doc's say 1 1/2 years to 5 yrs. Cure of sinus cancer may be possible with radiation but ultimately non curabile due to metastisis in future wich is expected. I have no metastisis (spread) from the original site. I am frightened of the surgery, pain, future radiation, chemotherapy and death. I'm getting married tomorrow and that is keeping me occupied. I any one has something to say I'd like to hear. Even though I'm a nurse I have no experience with this kind of thing.

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  • abbimom
    abbimom Member Posts: 87 Member
    #2
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    be positive
    I know it is hard to hear that but it helps. I'm so sorry you are going through this and you are getting married tomorrow. Congrats on the wedding. I had tongue cancer that spread to the lymphnodes in my neck. I was 21 years old and in college. I had the surgery, chemo and radiation and when I finished I went back to school. All doctor have to say survival rates but I don't think they mean much. My doctors gave me 2 years because I was a stage 4 and I'm still here 10 years later. I don't know how your surgery or treatments are going to be but they will be hard. I just remember always thinking of everything as a step. surgery step 1, recovery from surgery step 2 etc. I kept doing everything without really thinking about it. I think it helped because I didn't dwell so much. It is hard physically and mentally. As for you and your future husband this will bring you closer. My boyfriend when I diagnosed is now my husband and we both agree that our best moment was when he stayed the night with me after my surgery. Having support is key. I know we didn't have the same cancer but any questions and if you want to complain you can email me. I'm so sorry you have to go through this. stay strong and positive and enjoy being taken care of for a little while. Best wishes
    Linda
    iloveev@hotmail.com

    I will keep you in my thoughts and prayers
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
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    abbimom said:

    be positive
    I know it is hard to hear that but it helps. I'm so sorry you are going through this and you are getting married tomorrow. Congrats on the wedding. I had tongue cancer that spread to the lymphnodes in my neck. I was 21 years old and in college. I had the surgery, chemo and radiation and when I finished I went back to school. All doctor have to say survival rates but I don't think they mean much. My doctors gave me 2 years because I was a stage 4 and I'm still here 10 years later. I don't know how your surgery or treatments are going to be but they will be hard. I just remember always thinking of everything as a step. surgery step 1, recovery from surgery step 2 etc. I kept doing everything without really thinking about it. I think it helped because I didn't dwell so much. It is hard physically and mentally. As for you and your future husband this will bring you closer. My boyfriend when I diagnosed is now my husband and we both agree that our best moment was when he stayed the night with me after my surgery. Having support is key. I know we didn't have the same cancer but any questions and if you want to complain you can email me. I'm so sorry you have to go through this. stay strong and positive and enjoy being taken care of for a little while. Best wishes
    Linda
    iloveev@hotmail.com

    I will keep you in my thoughts and prayers

    Congrats on your wedding.
    I am sorry to read about your diagnoses. I am not familiar with your type of cancer, obviously. I do however, understand what it is to live with a very rare genetic blood disorder and SCC HNC stage IV. I am 43 and have already outlived the statistics for my blood disorder of 22 or so years old. As far as the HNC goes I had a tumor on the left side of my neck. 23 lymph nodes and salivary gland removed with 3 of those nodes positive. That was the mets and they never found my primary. I did ask for my staging but I have to say that not one of my doctors ever said you have 'X' amount of time left. I am 20 months out and still kickin'. I would not and have not ever listened to statistics. Attitude is everything.

    Be well.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
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    abbimom said:

    be positive
    I know it is hard to hear that but it helps. I'm so sorry you are going through this and you are getting married tomorrow. Congrats on the wedding. I had tongue cancer that spread to the lymphnodes in my neck. I was 21 years old and in college. I had the surgery, chemo and radiation and when I finished I went back to school. All doctor have to say survival rates but I don't think they mean much. My doctors gave me 2 years because I was a stage 4 and I'm still here 10 years later. I don't know how your surgery or treatments are going to be but they will be hard. I just remember always thinking of everything as a step. surgery step 1, recovery from surgery step 2 etc. I kept doing everything without really thinking about it. I think it helped because I didn't dwell so much. It is hard physically and mentally. As for you and your future husband this will bring you closer. My boyfriend when I diagnosed is now my husband and we both agree that our best moment was when he stayed the night with me after my surgery. Having support is key. I know we didn't have the same cancer but any questions and if you want to complain you can email me. I'm so sorry you have to go through this. stay strong and positive and enjoy being taken care of for a little while. Best wishes
    Linda
    iloveev@hotmail.com

    I will keep you in my thoughts and prayers

    Hi mjdouty
    There are a lot of us here with all kinds of different types of head or neck cancer, I am NPC myself. I know it is hard to take at first but just hang in there and keep focus and like Linda said keep positive as well. It is OK to be afraid we all know what you are going
    through right now; this is the right place for you to get all the support and help you need.

    I too have been dealing with a sinus infection for the passed 8 months and can’t find an ENT to do anything about it; maybe I need to see yours.

    Take care and welcome here to the Family
    Hondo
  • kingcole42005
    kingcole42005 Member Posts: 178
    #5
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    I'm very sorry for your diagnosis and I hope they are wrong.
    I'm very sorry for your diagnosis and I hope they are wrong. I have/had a very rare cancer also called mucoepidermoid carcinoma, it's not funny but it's like we "win" the cancer lottery in rareness. My cancer also is virtually unstudied I was told. It is terrifying and I can imagine the thoughts that are going through your head and I want you to know that I'm here for you, and I'm sure there are alot of other people in our group that will support you through your treatment. I'd like to know how they can guarantee metastisis if they can cure it thorough radiation? Sounds like an oxymoron? I know you will hear a million times as I did to stay positive, but you know what it's ok to feel like crap too and when you do, come on here and let us know. That's what this site is all about, we are all here to support one another. I will send a million positive thoughts and prayers your way tonight as I try to sleep. I don't sleep much anymore, I tend to worry about me about all of you and about life in general. Try to take care of yourself. I hope you have THE most beautiful wedding and it is everything you have ever dreamed about. BE good to yourself. Take care, Shelly
  • ekdennie
    ekdennie Member Posts: 238 Member
    #6
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    rare cancer
    there are so many cancer's out there, but when you find out you have a rare one it can really take a whollop out of you. I am like shelly in that I also have mucoepidermoid carcinoma (salivary gland cancer of the minor salivary glands). mine was in my hard palate and had grown into my maxillary sinuses. it was pressing on my septum and my upper jaw. it was clinically stage 4, pathologically stage 2 with no metastasis or spread to lymph nodes. mine in intermediate grade.
    I don't have the same type of cancer, but they did radiation to my sinuses. do not be afraid of the radiation. it will dry your nose out, but with saline it was not as bad as I expected. they also did radiation on my remaining hard and soft palate...that part as well as the areas that hit my tongue and throat hurt more than the sinuses did.
    as for statistics...don't' believe them...there are so many advances that there is no way to say how long someone will live. and all a doctor means when they say that can't guarantee you a cure is that it might someday possibly come back...but even they don't know for sure. have the surgery, then the radiation and give yourself the best odds. no one knows how long they will be alive anyway...don't focus on the statistics...there just isn't enough information for them to know anyway. I had looked up the statistics for my tumor type...I was getting myself so depressed, then I read the fine print...what had been looking like a not so great prognosis was biased by the age of those involved in the study...most had died, but they had died due to old age. it is hard to run a 15 year study when most of the participants where in their late 60's or early 70's at diagnosis. but based on my age (31), my prognosis was already looking up...one study even said that because I was under the age of 60 that I had a good chance to survive 20 years, but if I was over 60 my chances were much lower...isn't that true for most of the population?
    it sounds like you are going to have an in-depth surgery. if you believe in the doctor doing your surgery, then he/or she will do the best they can. I will be keeping you in my thoughts and prayers as you go through this. I didn't have your type of cancer, but I do understand about rare cancers, and I understand about a cancer that often comes back somewhere else even after surgery and radiation. mine does that too. I refuse to dwell on a possibility that hasn't even occurred yet. if you are at all like me, they will do the surgery, then you will go through radiation, and then you will see doctor after doctor for the rest of your life...not as frequent, but you will see them. you can trust that hopefully they will see anything while it is still in an early stage. it hasn't spread yet...maybe you will be one who never has it spread...you never know.
    enjoy your wedding...what a beautiful moment. the moment when you marry the person you love with all your heart. focus on the future the two of your wish to have together. cancer is now a part of your lives, but you don't have to let it rule you, to take a moment of happiness from you, or to fill you with fear. it has always helped me to remember that yes there will be pain...but pain is just a part of healing. you are having surgery as an eviction notice to the cancer, then radiation to clean up anything that the nasty non-paying tenant left behind...if you need chemo, then it is the deep clean for the carpets because the tenants had nasty pets. pain can be moderated by medication...many fear addiction to pain killers, that will only happen if you are on the wrong pain med or if you don't take it right. you are a nurse, but now you will be the patient. just tell your doctor(s) about any concerns you have, tell them when you have pain...don't try to tough it out, and you will make it through this.
    wishing you the best of luck and because I think you really need one...HUGE HUG!
    if you ever wanna talk, just send me a message. I am so sorry that you have to come to a site like this, but I am glad you found us...there are a lot of people who can help you through each stage of treatment even if they don't have the same type of cancer. there was no one online with my type when I started, then I met two amazing women who helped me know I wasn't alone in this battle. you are not alone.
    Hugs again!
    elizabeth
  • nkimber
    nkimber Member Posts: 46
    #7
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    ekdennie said:

    rare cancer
    there are so many cancer's out there, but when you find out you have a rare one it can really take a whollop out of you. I am like shelly in that I also have mucoepidermoid carcinoma (salivary gland cancer of the minor salivary glands). mine was in my hard palate and had grown into my maxillary sinuses. it was pressing on my septum and my upper jaw. it was clinically stage 4, pathologically stage 2 with no metastasis or spread to lymph nodes. mine in intermediate grade.
    I don't have the same type of cancer, but they did radiation to my sinuses. do not be afraid of the radiation. it will dry your nose out, but with saline it was not as bad as I expected. they also did radiation on my remaining hard and soft palate...that part as well as the areas that hit my tongue and throat hurt more than the sinuses did.
    as for statistics...don't' believe them...there are so many advances that there is no way to say how long someone will live. and all a doctor means when they say that can't guarantee you a cure is that it might someday possibly come back...but even they don't know for sure. have the surgery, then the radiation and give yourself the best odds. no one knows how long they will be alive anyway...don't focus on the statistics...there just isn't enough information for them to know anyway. I had looked up the statistics for my tumor type...I was getting myself so depressed, then I read the fine print...what had been looking like a not so great prognosis was biased by the age of those involved in the study...most had died, but they had died due to old age. it is hard to run a 15 year study when most of the participants where in their late 60's or early 70's at diagnosis. but based on my age (31), my prognosis was already looking up...one study even said that because I was under the age of 60 that I had a good chance to survive 20 years, but if I was over 60 my chances were much lower...isn't that true for most of the population?
    it sounds like you are going to have an in-depth surgery. if you believe in the doctor doing your surgery, then he/or she will do the best they can. I will be keeping you in my thoughts and prayers as you go through this. I didn't have your type of cancer, but I do understand about rare cancers, and I understand about a cancer that often comes back somewhere else even after surgery and radiation. mine does that too. I refuse to dwell on a possibility that hasn't even occurred yet. if you are at all like me, they will do the surgery, then you will go through radiation, and then you will see doctor after doctor for the rest of your life...not as frequent, but you will see them. you can trust that hopefully they will see anything while it is still in an early stage. it hasn't spread yet...maybe you will be one who never has it spread...you never know.
    enjoy your wedding...what a beautiful moment. the moment when you marry the person you love with all your heart. focus on the future the two of your wish to have together. cancer is now a part of your lives, but you don't have to let it rule you, to take a moment of happiness from you, or to fill you with fear. it has always helped me to remember that yes there will be pain...but pain is just a part of healing. you are having surgery as an eviction notice to the cancer, then radiation to clean up anything that the nasty non-paying tenant left behind...if you need chemo, then it is the deep clean for the carpets because the tenants had nasty pets. pain can be moderated by medication...many fear addiction to pain killers, that will only happen if you are on the wrong pain med or if you don't take it right. you are a nurse, but now you will be the patient. just tell your doctor(s) about any concerns you have, tell them when you have pain...don't try to tough it out, and you will make it through this.
    wishing you the best of luck and because I think you really need one...HUGE HUG!
    if you ever wanna talk, just send me a message. I am so sorry that you have to come to a site like this, but I am glad you found us...there are a lot of people who can help you through each stage of treatment even if they don't have the same type of cancer. there was no one online with my type when I started, then I met two amazing women who helped me know I wasn't alone in this battle. you are not alone.
    Hugs again!
    elizabeth

    Rare too...
    I know it doesn't sound like it's rare since there are three of us in a row who have posted with Mucoepidermoid Carcinoma, but I promise it's very rare too :) I think Shelly, Elzabeth and I are the only three on this board with that type of cancer, and we are fairly close in terms of treatment times. Believe me, I know how scary it can be... so many times I leave the doctor saying, "why can't I have a normal cancer???" They have no clue why certain things are happening. For me what halps the most (and I'm sure you know this because you're a nurse) is finding a doctor whom you trust. I finally have that... after four months with my first oncologist. My new doctor is amazing, and while neither he nor anybody knows exactly what to do to treat me, I absolutely believe he is doing the right things.

    If you ever want to chat please just send me a message and I will be happy to do anything I can! I have met some incredible people on this site (Elizabeth being one of them) who have helped me get through the tough times... I don't know what I would have done without them!

    Sending lots of hugs your way... congratulations on the wedding and my hope for you is that you are able to put this out of your mind at least for the time being. Get mad at it if you need to :)

    Nicole
  • mjdouty
    mjdouty Member Posts: 6
    #8
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    nkimber said:

    Rare too...
    I know it doesn't sound like it's rare since there are three of us in a row who have posted with Mucoepidermoid Carcinoma, but I promise it's very rare too :) I think Shelly, Elzabeth and I are the only three on this board with that type of cancer, and we are fairly close in terms of treatment times. Believe me, I know how scary it can be... so many times I leave the doctor saying, "why can't I have a normal cancer???" They have no clue why certain things are happening. For me what halps the most (and I'm sure you know this because you're a nurse) is finding a doctor whom you trust. I finally have that... after four months with my first oncologist. My new doctor is amazing, and while neither he nor anybody knows exactly what to do to treat me, I absolutely believe he is doing the right things.

    If you ever want to chat please just send me a message and I will be happy to do anything I can! I have met some incredible people on this site (Elizabeth being one of them) who have helped me get through the tough times... I don't know what I would have done without them!

    Sending lots of hugs your way... congratulations on the wedding and my hope for you is that you are able to put this out of your mind at least for the time being. Get mad at it if you need to :)

    Nicole

    Rare Canccer
    i had a wonderful wedding. My husband and I renewed our vows after 33yrs.my children 25yrs and 23 years participated in reading the couples prayer it was only family. It was very spiritual experience. I have not been able to smell for a couple of years but i could smell my beautiful bouquet very strongly.Next is heal for about 4 wks then radiation, not exactly sure what to expect. One Day At A Time.
  • lawchk
    lawchk Member Posts: 12
    #9
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    mjdouty said:

    Rare Canccer
    i had a wonderful wedding. My husband and I renewed our vows after 33yrs.my children 25yrs and 23 years participated in reading the couples prayer it was only family. It was very spiritual experience. I have not been able to smell for a couple of years but i could smell my beautiful bouquet very strongly.Next is heal for about 4 wks then radiation, not exactly sure what to expect. One Day At A Time.

    One day at a time
    Congratulations on renewing your vows. Be so very thankful that you have someone that stays by your side throughout all of this.

    I was married in Sept 2009 and diagnosed with stage 2 esthesioneuroblastoma, a rare cancer of the olfactory (smelling) nerves that was supposed to be found primarily in older males. I'm a 27 y/o female, am a health nut & have found myself constantly asking over the last year...why me? why now? I was so lucky to have my husband there next to me. He cooked for me, never left my side & even took me to all of my doctor's visits & MRIs even though he hates docs & can't stand the sight or thought of blood/needles. We celebrated our one year anniversary this past September & I celebrate being cancer free one year next week :)

    You're absolutely right that it's one day at a time. For the 11 months following surgery (which btw was removed entirely endoscopically through my nose), I have only been able to smell one or two random days a month. The docs have prescribed me a low dose steroid nasal rinse I use in conjunction with a saline nasal rinse. A week after I started it, I've been able to smell every day. It's amazing how much the small things in life matter right :)

    What I've realized through this whole experience is to live every day to its fullest and to appreciate everything that you have. From the major things like a loving caring family to the small things like being able to smell.

    Congrats & take care through this journey called life!

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