MEC of tongue, looking for hope and guidance

riles89

Hello all,

My boyfriend of 3 years was recently diagnosed with a MEC of salivary gland, intermediate grade. I am looking for some advice, guidance, and hope at this time. I have been reading a lot of these discussion boards and have found them very helpful.

 

My boyfriend had a 15.5 hour surgery on 08/1, in which the base of his tongue was reconstructed with the tissue/blood vessels from his forearm. The biopsy from the week prior stated that my boyfriend had a MEC of salivary gland, intermediate grade. The doctor/surgeon felt MEC was in his tongue, which is unusual as this type of carcinoma typically occurs in salivary glands (so, I guess, he felt slightly counter to biopsy). Treatment would include surgery followed by 6-weeks of radiation.

During surgery the doctor gave us 3 updates throughout the day. The second one, around 3:30PM, was that they had to remove lymph nodes as they tested one and it came back positive for cancer cells; this would add time to the surgery, as they hadn’t yet started the reconstruction. At 9:30PM we received another update, which was that some of the frozen samples were coming back positive for cancer cells. The doctor made the decision to remove another centimeter of tissue from around my boyfriend's tongue. He also said he felt the tumor may have started in a salivary gland—but he didn’t mention which one. Because he took an additional centimeter, they made the decision to remove a part of my boyfriend's pectoral muscle to reconstruct more of the base of tongue and floor of mouth. To add, the sensory nerve on right side (lingual nerve) of tongue had to be removed.

There is not much more information that I have at this point; his family and I haven't even been able to arrange a family meeting. To add, the doctor made the (I think misguided) decision to tell us a survival rate % during the last update—after 14 hours of being at the hospital waiting for the surgery to be over.

My boyfriend is currently in the step-down unit after having spent 5-days in the ICU. He has improved each day; he has started to talk (with trach in place), had peg placed two days ago, and even (fingers crossed) swallowed water today. The doctor's were not sure he would be able to do that at all, and as I type this he is getting an x-ray to make sure that the water did not travel to his lungs.

As I know many of you can imagine--and have experienced first-hand as patients and loved-ones--I am scared and anxious out of my mind. We all feel in the dark, and especially my boyfriend. He has not voiced many of his questions, and he has a positive mind-set. I have a million questions about what could be the final pathology from the surgery. Below are just a few of my questions. I don't know if any of them can be answered, but anything anyone can offer I would sorely appreciate it.

1) Which salivary gland would most likely be involved? I am hoping sublingual rather than submandibular.

2) If the entire (or most) of the lingual nerve was removed, does that mean cancer cells could be lurking within some cranial nerves or base of the skull?

3) Does MEC respond well to radiation? I have heard that MEC does not really respond to chemo; but, if there was one chemo drug that could help--which one could it be?

Thank you all, and all the best.

 

CivilMatt

welcome

riles89,

Welcome to the H&N forum, I am very sorry to hear your boyfriend’s story, but be comforted in the fact that MEC patients are responding well to treatments and he should respond well too.  There are a number of H&N members who have dealt with MEC and some which check the boards regularly and hopefully will respond.  Additionally, there are a number of members who have gone through reconstruction of the tongue and live a fairly normal life.

I don’t know  the particulars of your case and do not know which salivary gland  is  involved.  It does sound like they removed much of the cancer and will go after the rest with additional treatment.  MEC is different than SCC, but there are some members with a number of years post.

This is a tough situation, anyway you look at it.  You have already started some aggressive  treatments and should have a good outcome when he is finished.  The difficult  time will most likely continue for a while, but there are things the patient can do during treatment which help, it just depends on the issues.

Good luck,

Matt

riles89

CivilMatt said:

welcome

riles89,

Welcome to the H&N forum, I am very sorry to hear your boyfriend’s story, but be comforted in the fact that MEC patients are responding well to treatments and he should respond well too.  There are a number of H&N members who have dealt with MEC and some which check the boards regularly and hopefully will respond.  Additionally, there are a number of members who have gone through reconstruction of the tongue and live a fairly normal life.

I don’t know  the particulars of your case and do not know which salivary gland  is  involved.  It does sound like they removed much of the cancer and will go after the rest with additional treatment.  MEC is different than SCC, but there are some members with a number of years post.

This is a tough situation, anyway you look at it.  You have already started some aggressive  treatments and should have a good outcome when he is finished.  The difficult  time will most likely continue for a while, but there are things the patient can do during treatment which help, it just depends on the issues.

Good luck,

Matt

Thank you so much for your

Thank you so much for your quick reply, CivilMatt. I am encouraged to read that MEC patients can respond well to treatment. The surgery is definitely the first (aggressive) step within this process. I can certainly keep writing here once I get more information from the doctors. Unfortunately we just don't have any additional information yet.

All the best,

Megan

tommyodavey

MEC Too

Hi riles89,

I too had MEC but of the base of my tongue.  Lucky for me they only took a medium chunk out from the bottom so my speech wasn't affected too badly.  A little off at first but I improved with time.  

Yes, MEC is one of the rare ones.  I don't know the percentages of survival with intermediate grade so I cannot comment on that.  What I do know is that it coming back is less common than other cancers as long as it's not the severe case.  There are three kinds of MEC.  Low grade, intermediate, and high grade.  Mine was the low grade and responded well to radiation.  No, it does no good getting chemo for it like your doctor said.

Feel free to click on my profile and read my story.  PM me if you like and we'll talk some more.  We only have a few members here who have had it so they'll post as soon as they see this thread.

Hang in there.  You're in the right place.

Tom

Mom68

Also have MEC

Hi! I also have had MEC. I had it on the roof of the mouth. The doc took all the skin off the roof of the mouth in June. There are a couple of others who have MEC as well, who are on here currently, and they all had it on the roof of the mouth as well. Tommyodavey is the one person I thought of (Hi Tommy!) when you posted this thread. MEC is USUALLY found in the parotid gland, and then it can also show in either the roof or the base of the mouth. 

MEC is very treatable. They do categorize MEC into 3 levels: low, intermediate, and high. I notice that your boyfriend's MEC is intermediate grade, and that is much better than high grade. It sounds as if he was put through quite the surgical experience, and my thoughts and prayers are with you. 

One of the things that brought me so much comfort was to go through the "Roll Call" threads (and thanks to CivilMatt for creating those...you are so very much appreaciated!) and look at all the MEC survivors here. What you can do is hit "ctrl" and "F" and a Find window will pop up in the right hand corner of your screen (this is on a windows computer), and then you can type in "mucoepidermoid" and then you can use the down arrows to read each survivors' story and it will bring you great information about who here has it, what treatment they received, and how they're doing now. Talk about helping to reduce blood pressure! Phew! That calms me every time. And it lets me also know that I'm not alone. 

You are not alone either. I would also suggest that you read about folks who have SCC around the tongue area, and read their stories about healing, radiation, PEGs, the blessings of having Magic Mouthwash handy during radation, and tips for getting calories...not to mention lots of other helpful advice around here. You can also use that same Find function and type in tongue in the same Roll Call thread, and that should also show you lots of people who've gone through tongue reconstruction as well. The reason I suggest this is that intermediate grade MEC acts in a SOMEWHAT similar fashion to SCC, and treatment is very much the same. 

If you have any questions, please don't hesitate to post here or message me. This is not a club you want to join, but now that you're here, you'll find many fantastic people who listen and care. These are some of the finest people who give lots of support and guidance. 

Warmest Regards, Mary

caregiver wife

as to percentages...

I cannot speak to MEC, so I will address percentages.  Oncologists are in a rough situation of just how much knowledge to share.  Some people want to know. Some do not.  My husband had advanced Head and Neck cancer about 7 years ago now.  The percentages gave him about 3 months to live due to the advanced stage.  Over the years several progressions developed that, by the numbers, he should not have survived.  We got through all the ups and downs together and he is in remission, just having his 73rd birthday.

It sounds as though he has a top notch team.  The only thing I can say about percentages and averages is, they apply to NO single person.

Best wishes for his continued recovery,

riles89

Thank you

Thank you all so much for your responses. I will keep you posted once I receive more information. My boyfriend should be discharged from the step-down unit within the next two days.

 

All the best,

Megan

Mom68

riles89 said:

Thank you

Thank you all so much for your responses. I will keep you posted once I receive more information. My boyfriend should be discharged from the step-down unit within the next two days.

 

All the best,

Megan

How is he?

Hi Megan! How is your boyfriend? Has he been discharged from the step down unit? Warmest Regards, Mary

riles89

Mom68 said:

How is he?

Hi Megan! How is your boyfriend? Has he been discharged from the step down unit? Warmest Regards, Mary

Thanks for your note

Hi Mom68, 

Thank you for checking in. Sorry, I have been out of town for a couple days and haven't logged in here until now! My boyfriend was discharged from the step-down unit on August 15. He had his first follow-up with the surgeon today. The doctor didn't give much more information, but did say at this point there is no evidence of disease. I'm guessing that means clear margins? Unfortunately, as the cancer cells were spreading along nerves and possibly in artieries, the doctor said that radiation AND chemo may be used...and before he just said radiation. I'm not quite sure how to take that, and there doesn't seem to be much transparency on behalf of the surgeon. My boyfriend met with the radiation medicine doctor too, who he said was very nice. 

 

I'm thinking maybe the chemo is procautionary given that nerves and arteries may be involved? Trying to stay positive! 

 

Thank you again for reaching out,

Megan 

riles89

Updates, boyfriend's last radiation and chemo

Hello all,

I haven't been here in many weeks and wanted to post an update about my boyfriend. He has officially completed, as of yesterday (11/7), all 35 radiation treatments and 6 chemos!

Of note is that, the MRI he had the first week in September--about a month post-surgery and prior to starting rads/chemo--showed that cancer cells remained along some of his facial nerves and were attempting to spread to his brain. We also found out that as opposed to MEC, the cells were in fact SCC.

I noticed in some of the other discussions that it is typical to wait 12 weeks post-treatment for PET/CT scans. I'm already very nervous. Any words of wisdom and input from patients and caregivers would be helpful.

All the best,

Megan

Mom68

Thanks for keeping us posted

Hi Megan!

Thanks for the update. So, he doesn't have MEC, but rather SCC? I would imagine he has further treatment ahead for him? What is the plan now?

Warmest Regards, Mary

riles89

rcaulder said:

Wait for post treatment X-rays

Take the analogy of dropping an ice cream cone on the floor. When you pick it up there's still remaining ice cream there. You generaly need a sponge to get the rest up. Same to remove cancer in some cases. Surgery removed the bulk of cancer and the next step, radiation and chemo will clear up the rest. Put your mind at ease. Just wait for post treatment radiology studies.  

Thank you!

Thank you, analogies are definitely useful.

All the best,

Megan

riles89

Mom68 said:

Thanks for keeping us posted

Hi Megan!

Thanks for the update. So, he doesn't have MEC, but rather SCC? I would imagine he has further treatment ahead for him? What is the plan now?

Warmest Regards, Mary

Yes, SCC rather than MEC

Yes, it seems like the frozen samples he had during the surgery in August came back as mostly SCC. We actually were told that from the medical oncologist and not the ENT surgeon, despite having a post-op meeting in which we asked about pathological reports. His treatment thus far has included that August surgery, plus 35 rads (200 each time, I believe; IMRT and stereo) and 6 chemos (was shooting for 7 but last WBC came back low). I believe the plan is PET/CT scans in 12 weeks.

All the best,

Megan

rcaulder

Wait for post treatment X-rays

Take the analogy of dropping an ice cream cone on the floor. When you pick it up there's still remaining ice cream there. You generaly need a sponge to get the rest up. Same to remove cancer in some cases. Surgery removed the bulk of cancer and the next step, radiation and chemo will clear up the rest. Put your mind at ease. Just wait for post treatment radiology studies.  

riles89

Two scans under belt, next one beginning of July

Hi all,

I am back on and have been browsing the board. I want to make more of an effort to respond to others as well. I wanted to let you know that my fiance (we got engaged at the end of November  ) had a good scan at the end of January--had full-body PET/CT and MRI of head and neck. It seems the only thing to keep an eye on is that, as he had the SCC in a facial nerve, some of his nerves look structurally different from the radiation; this could be his new basline for his nerves. No hotspots on PET! His MRI of head and neck in April was OK as well. His next scan is first week in July; he will have MRI of head and neck as well as PET/CT of lungs.

I find that I am still constantly worried about the next scan. I doubt that feeling will go away?

My fiance is still working on swallowing. He pulled out his PEG tube in April and is mostly drinking high calorie shakes, Soylent, Ensure. He can eat soft bread, applesauce--which is good. He goes to speech/swallow therapy weekly. I am trying to keep his spirits up. He is working so hard at trying to regain the ability to swallow--something most take for granted.

All the best,

Megan

Dean54

I always worry about the next scan myself

And have an MRI next week. I never had any trouble swallowing but another thing we take for granted is the ability to ENJOY food. That is totally gone at least for me and really don't think it's ever coming back at this point. Now I dread each meal and just hope I can gag it down and not bite the back of my tongue AGAIN.

I always say that I can deal with the side effects as long as I'm cancer free but it sure has changed the way I go thru life now. I always pass when the friends call wanting to go out to eat and the wife goes without me.

Can only hope things get better for you and your fiance Megan.

riles89

Dean54 said:

I always worry about the next scan myself

And have an MRI next week. I never had any trouble swallowing but another thing we take for granted is the ability to ENJOY food. That is totally gone at least for me and really don't think it's ever coming back at this point. Now I dread each meal and just hope I can gag it down and not bite the back of my tongue AGAIN.

I always say that I can deal with the side effects as long as I'm cancer free but it sure has changed the way I go thru life now. I always pass when the friends call wanting to go out to eat and the wife goes without me.

Can only hope things get better for you and your fiance Megan.

Thanks for your input, Dean54

Thanks for your input, Dean54! You are right about enjoying food as well. I hope that your MRI next week goes well.