MEC salivary gland cancer (submandibular), newly diagnosed
Hi! I am thyroid cancer survivor and now being Dx with salivary gland cancer (mec of submandibular gland). This may have been caused by radioactive iodine treatment for thyroid cancer... So one was done the other came in. Im so sad! I just had two wonderful babies and i cant enjoy them as i have to concentrate on all these doc appointments, surgeries etc. And Im soo worried I will not be here to see them grow! I am still to have the surgery and the ENT is one of the best out there. The biopsy report did now show the grade of the cancer, but noted necrosis, which is usually associated with more aggressive ones. Please pray for me that the final Dx will be the low grade cancer. Thank you!
Comments
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Welcome to the Forum
Hi Kiev1996,
I'm sorry you had to join our group of survivors but the good news is that the people here are fantastic at supporting you through the process of treatment.
I am currently cancer free from Mucoepidermoid Carcinoma (MEC) base of tongue and right lymph nodes.
Mine was a low grade with clear margins and I will pray that yours too is the same. MEC is fairly rare and is mostly treated with surgery and radiation. Depending on the cancer, your doctor will decide if chemo is a good choice or not. With me, it was not. I had a medium sized tumor removed from the base of my tongue and then had a radical right neck dissection due to it spreading to my lymph nodes. They removed about 40 + or - with two positive. How I got mine they can't say. It could have been due to owning the worst offender of a radiation emitting cell phone or maybe not.
Let us know what comes next and the grade too when you find out. Either way, you WILL recover from this. MEC is normally very treatable.
Tom
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Thank you Tom!tommyodavey said:Welcome to the Forum
Hi Kiev1996,
I'm sorry you had to join our group of survivors but the good news is that the people here are fantastic at supporting you through the process of treatment.
I am currently cancer free from Mucoepidermoid Carcinoma (MEC) base of tongue and right lymph nodes.
Mine was a low grade with clear margins and I will pray that yours too is the same. MEC is fairly rare and is mostly treated with surgery and radiation. Depending on the cancer, your doctor will decide if chemo is a good choice or not. With me, it was not. I had a medium sized tumor removed from the base of my tongue and then had a radical right neck dissection due to it spreading to my lymph nodes. They removed about 40 + or - with two positive. How I got mine they can't say. It could have been due to owning the worst offender of a radiation emitting cell phone or maybe not.
Let us know what comes next and the grade too when you find out. Either way, you WILL recover from this. MEC is normally very treatable.
Tom
Tom, Thank you so much for your support! I've been reading the Survivor trend as well and that helps a lot. My doc doesnt seem to want to take out too many nodes. He said he will do only the "close by" ones. I'll be talking to him soon as I want to understand why. I rather take more out. Everywjere is says that MEC in submandibular has worse prognosis than in parotid
, so I would like to be more aggressive with the surgery. I already had modified dissection of the left side for thyroid cancer, not seems to be the turn to do the right side.Anyway, I'm very happy you are doing great after this ordeal and wish you continuing strength and health!
V
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Welcome to the H&N Group
Welcome to the group, but also sorry you have to be here. Mine was SCC T3 supraglotti, just above my larynx. Yes, I will add you to my prayer list, and hope it is low grade. Just take one day at a time, and Never Give Up. You and your family will be in my thoughts and prayers.
Bill
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Sorry You need us but glad
Sorry You need us but glad You found us. Welcome. I know what you mean about your kids. We have 2 girls. When my husband got diagnosed with nasopharyngeal scc they were 3 years and 5 months old. I think they were his biggest reasons to fight. Thankfully he did well and I'll be praying that all goes well for you too.
This is a good place to get support at any time. I wish you the best
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mec
I had high grade mec in my submandibular. Diagnosed 2010. Almost 5 years, knock on wood. I suggest not reading anything on the internet, it will just scare the crap out if you. I survived it, you will too. Eat super healthy, meditate, try yoga, treat your mind , body and soul, not just your body. Wish someone had told me this at the beginning. It's a miserable fight, but build up your tool box asap, and you'll make it through. Prayers and postivity for you and your family. Shelly
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Congratulations on your 5 year mark!kingcole42005 said:mec
I had high grade mec in my submandibular. Diagnosed 2010. Almost 5 years, knock on wood. I suggest not reading anything on the internet, it will just scare the crap out if you. I survived it, you will too. Eat super healthy, meditate, try yoga, treat your mind , body and soul, not just your body. Wish someone had told me this at the beginning. It's a miserable fight, but build up your tool box asap, and you'll make it through. Prayers and postivity for you and your family. Shelly
Shelly, thank you thank you! I am happy to hear you are doing well 5 years later!
How did it go with radiation for you? Did you have same side effects as the other fellows here?
For me looks like they are going to just cut where the tumor is, about 2inches horizontally. I am feeling like i want the modified dissection, where they cut longer and more vertically and take more nodes. I did have it done before on the other side for thyroid cancer. Not sure why the doc prefers that. I am going to ask when he calls with MRI and biopsy slides review.
Veronika
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High grade MEC of submandibular
Hi there - I was diagnosed late last year with high grade MEC with extensive perineural invasion, skull base invasion at foramen ovale and positive margins ( luckily lymph nodes were clear). I only had the surrounding 12 nodes removed during surgery. I just had my first scan after radiation last month and it was NED. While there is a possibility of cancer coming back, for now things are looking good.
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Yay!eulerphi said:High grade MEC of submandibular
Hi there - I was diagnosed late last year with high grade MEC with extensive perineural invasion, skull base invasion at foramen ovale and positive margins ( luckily lymph nodes were clear). I only had the surrounding 12 nodes removed during surgery. I just had my first scan after radiation last month and it was NED. While there is a possibility of cancer coming back, for now things are looking good.
Eulerphi, congratulations on NED!!! Thank you for posting. I've sent you private message.
V
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I am so glad your hubby didavisemi said:Sorry You need us but glad
Sorry You need us but glad You found us. Welcome. I know what you mean about your kids. We have 2 girls. When my husband got diagnosed with nasopharyngeal scc they were 3 years and 5 months old. I think they were his biggest reasons to fight. Thankfully he did well and I'll be praying that all goes well for you too.
This is a good place to get support at any time. I wish you the best
I am so glad your hubby did well! Yes, my heart hurts so much when thinking that my babies can be without their mom! I will do all i possibly can for that not to happen! Thank you for keeping me in your prayers!
V
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MEC here too!
I had T2N0M0 MEC, low grade two years ago. It was a large tumor that had broken through my lower left jaw. It took two surgeries to remove it along with 24ish nodes removed. I have a titanium jaw and a few false teeth, but the awful cancer is gone! I just celebrated my two years of cancer free. It was a tough treatment and this group got me through it all. I am thankful to God for the healing and for my CSN family for a good kick in the butt when I needed it!
Wishing you only the best!!!!0 -
Kiev1996, welcome to the
Kiev1996, welcome to the family nobody wants to join. we will be here to help you get through this. i'm so sorry you are facing this. you've found a good place to be though. i am definitely praying for it to be low grade and for you to get through tx and back to living. hang in there and know that we are here for you. we're on the sidelines cheering you on, listen and you'll hear us....lol
God bless you and your family,
dj
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hello
Hello,
I am so sorry you had to meet all of us here, but I am glad that there are so many amazing people on here to help offer support! I am not on here as often as I used to be. I am busy enjoying being mom to four kiddos! I was Intermediate Grade MEC of the Hard Palate with growth into my sinuses. Since my initial tumor removal, I have had 30 rounds of radiation, 2 sinus surgeries, 2 rounds of esophagus dilations and I will probably have a few more esophagus dilations. My initial biopsy reports said my tumor was Low Grade, but post removal it was Intermediate and Clear Cell Variant. I only needed radiation because of the clear cell variant. I had clear margins, but the clear cell was why I qualified for radiation. I hope your results are low grade.
Enjoy life with your kids, even with all the appointments. I know how hard it is, but it can be done! Sending you many hugs!
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I have been reading your posts!ekdennie said:hello
Hello,
I am so sorry you had to meet all of us here, but I am glad that there are so many amazing people on here to help offer support! I am not on here as often as I used to be. I am busy enjoying being mom to four kiddos! I was Intermediate Grade MEC of the Hard Palate with growth into my sinuses. Since my initial tumor removal, I have had 30 rounds of radiation, 2 sinus surgeries, 2 rounds of esophagus dilations and I will probably have a few more esophagus dilations. My initial biopsy reports said my tumor was Low Grade, but post removal it was Intermediate and Clear Cell Variant. I only needed radiation because of the clear cell variant. I had clear margins, but the clear cell was why I qualified for radiation. I hope your results are low grade.
Enjoy life with your kids, even with all the appointments. I know how hard it is, but it can be done! Sending you many hugs!
Hi! Thank you for hugs, i need them!
I have been reading your old posts and they are very encuraging to me. And yes, this family here is very nice and supportive. So many posts here are touching my heart! It feels that I personally know many of them by now. I think this is the only positive from this diagnosis - meeting all these wonderful people and seeing their strength and souls and hearts.
I just had my MRI done today and will do the pre surgery exam and blood tests tomorrow. So hopefully mid next week i will have some news or even get moved for earlier surgery date.
Veronika
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Good newsKiev1996 said:I have been reading your posts!
Hi! Thank you for hugs, i need them!
I have been reading your old posts and they are very encuraging to me. And yes, this family here is very nice and supportive. So many posts here are touching my heart! It feels that I personally know many of them by now. I think this is the only positive from this diagnosis - meeting all these wonderful people and seeing their strength and souls and hearts.
I just had my MRI done today and will do the pre surgery exam and blood tests tomorrow. So hopefully mid next week i will have some news or even get moved for earlier surgery date.
Veronika
Thank you All for your prayers! They have been answered! My MEC turned out to be low grade and even though the size is borderline stage 1-2 at 2cm, there is no lymph node involvement!!! It also turned out to be in a more favorable gland - parotid instead of submandibular. Apparently, the whole parotid gland was gone - burnt by radioactive iodine treatment i had for thyroid cancer 5 yrs ago. About 2 years ago at started to swell and remained swelled and inflamed for a month or two. I think this is when it was dying. So the whole gland was gone just the tumor remaned on the bottom of it.
Recovery from the surgery is not bad, but so far out of 3 neck surgeries i had (thyroidectomy, left selective neck dissection, and now right smaller dissection) this one is the hardest. Even though this one was an outpatient one. I think this is mostly due to one of the muscles being cut and repaired. So my right bottom lip is paralized and i can bite a piece of bread or chew on the right side. I was told this should recover in a couple of months.
So, first I was upset i need surgery for benign mass that has a high chance of lip paralysis. Then i was even more upset by finding that was not benign mass. Then more upset by some not good looking things on biopsy. Now I am so happy with the low grade report, that i am not so much upset by cancer or paralyzed lip. Funny how mind works.
Thank you all so much for your support! I would not be able to go through this without you!
Veronika
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kiev, i'm so happy for yourKiev1996 said:Good news
Thank you All for your prayers! They have been answered! My MEC turned out to be low grade and even though the size is borderline stage 1-2 at 2cm, there is no lymph node involvement!!! It also turned out to be in a more favorable gland - parotid instead of submandibular. Apparently, the whole parotid gland was gone - burnt by radioactive iodine treatment i had for thyroid cancer 5 yrs ago. About 2 years ago at started to swell and remained swelled and inflamed for a month or two. I think this is when it was dying. So the whole gland was gone just the tumor remaned on the bottom of it.
Recovery from the surgery is not bad, but so far out of 3 neck surgeries i had (thyroidectomy, left selective neck dissection, and now right smaller dissection) this one is the hardest. Even though this one was an outpatient one. I think this is mostly due to one of the muscles being cut and repaired. So my right bottom lip is paralized and i can bite a piece of bread or chew on the right side. I was told this should recover in a couple of months.
So, first I was upset i need surgery for benign mass that has a high chance of lip paralysis. Then i was even more upset by finding that was not benign mass. Then more upset by some not good looking things on biopsy. Now I am so happy with the low grade report, that i am not so much upset by cancer or paralyzed lip. Funny how mind works.
Thank you all so much for your support! I would not be able to go through this without you!
Veronika
kiev, i'm so happy for your good news!!! cancer does have a way of making us upset. i'm glad you are able to calm down and be pleased with the new report. i hope you can be patient about the lip and i pray full movement comes back. we all seem to have some side effect from tx. i think that's a requirment of surviving cancer....lol.
God bless you,
dj
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Glad for you......Kiev1996 said:Good news
Thank you All for your prayers! They have been answered! My MEC turned out to be low grade and even though the size is borderline stage 1-2 at 2cm, there is no lymph node involvement!!! It also turned out to be in a more favorable gland - parotid instead of submandibular. Apparently, the whole parotid gland was gone - burnt by radioactive iodine treatment i had for thyroid cancer 5 yrs ago. About 2 years ago at started to swell and remained swelled and inflamed for a month or two. I think this is when it was dying. So the whole gland was gone just the tumor remaned on the bottom of it.
Recovery from the surgery is not bad, but so far out of 3 neck surgeries i had (thyroidectomy, left selective neck dissection, and now right smaller dissection) this one is the hardest. Even though this one was an outpatient one. I think this is mostly due to one of the muscles being cut and repaired. So my right bottom lip is paralized and i can bite a piece of bread or chew on the right side. I was told this should recover in a couple of months.
So, first I was upset i need surgery for benign mass that has a high chance of lip paralysis. Then i was even more upset by finding that was not benign mass. Then more upset by some not good looking things on biopsy. Now I am so happy with the low grade report, that i am not so much upset by cancer or paralyzed lip. Funny how mind works.
Thank you all so much for your support! I would not be able to go through this without you!
Veronika
That is much better then you thought, and good news in away.
Remember.....You are never alone, and Never Give Up. Everyone here is like family and we are here for each other. It is nice to beable to tell someone who really does understand. I'm comming up on my two years [ at 22 months] but I will always be here.
Bill
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Bill, yes, so true- you guyswmc said:Glad for you......
That is much better then you thought, and good news in away.
Remember.....You are never alone, and Never Give Up. Everyone here is like family and we are here for each other. It is nice to beable to tell someone who really does understand. I'm comming up on my two years [ at 22 months] but I will always be here.
Bill
Bill, yes, so true- you guys trully understand and know what to say!
Now I need to learn how not to see cancer in every ache and pain. This cancer thing is not only physical diease but also mental. Life is never the same again even when we try for it to be the same.
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