Mucoepidermoid carcinoma, grade II
Comments
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SurgeryLeoS2323 said:Hi ekdennie
Hi Elizabeth
I just wanted to say I found your posts really inspirational - as someone who has tackled the same cancer at a similar age (I am 34) and with a young family (I have a little girl aged 3 and a little boy aged 17 months) I take comfort from you having beaten it and come out the other side.
I hope to get to where you are someday, able to look back on having won!
You must be brave to have another little one though, two are tough enough for me even without this business! Four I take my hat off to anyone for managing.
Like your MEC mine has been graded as intermediate, although the oncologist thought the behaviour (speed of development and size, not lighting the PET scan up) are towards the low end. One thing I couldn't believe was that you had yours for over 5 years!
If the situation is as it was when I had my PET scan just before Christmas and as the doctors think it is then I can handle it and take it on. I guess I have been most scared that in the 2 months from the PET to the removal of the met that it might have gone somewhere else like a kidney or something and made things totally different.
I suppose in the grand scheme of these things and the length of time these things can take to develop 2 months isn't much time - especially as it hadn't done much in 4 months from the metastatic node appearing to when I had the PET scan, so little they missed it.
The oncologist is sending me for an MRI of my head and neck area next as I have had PET already and MRI is the only scan I haven't had yet. I think his main aim in doing this is to try to find the primary which is hiding.
He doesn't seem to be worrying it could have moved elsewhere which is encouraging, and said that he thought it to be 'single figure' chances in my case it has moved to any other nodes apart from the one I had removed which also sounds good.
Nonetheless he is taking all those nodes on that side of my neck out in a few weeks just to make sure, I guess better safe than sorry! We don't need them all anyway I suppose..:)
Thanks for your posts Elizabeth, they have made me feel better today and I really appreciate it. Its great to hear the good stories when you are just starting out!
All the best
Leo
Hi Leo,
When is your surgery - or have you had it already? I was rereading some posts here and just wanted to check on you. I'm still fretting my scan and appointment - I can sure sympathize with your worry from the time of the scan to the surgery. I will say a prayer for you. Peace to you and your family.0 -
Hidee248 said:MCE
It was grade II. We received all the confirmation yesterday and our treatment plan so far. She will have surgery in 2 weeks to remove it and next week she will have a biopsy on her lymph nodes to check them.
They said hers was close to her sinuses. It's on her upper left side after her last molar. So they said removing it will leave a hole.
I'm curious to know where everyone's was? Did removing it have an side effects?
Hi Dee,
How is your sister doing? I hope all is well and will say a prayer for her. Take care.0 -
My 23-year-old son waskingcole42005 said:Hi Dee,
I'm sorry about your sister and what you and your family must be going through. A cancer diagnosis is terrifying, especially so for young children. You must be pretty young yourself and I can't imagine what you must be thinking. I was diagnosed with MEC Sept. 2010. I had a high grade tumor in my submandibular, on the left side under my tongue. Dr. Eisele at UCSF removed the left floor of my mouth and did a skin graft from my thigh. I was in the hospital for 10 days, with a feeding tube. I also had a neck dissection to remove the lymph nodes in my neck. I believe this is what your sister would be going through. It is tough, but it sounds like she has great support, with a big sister like you watching out for her. It is painful, but they will give her meds for that. Also she might not be able to talk for awhile, I used a pad of paper constantly. She might have to have radiation. They will fit her with a special mask that holds her in place while a machine radiates the cancerous area. The radiation does cause alot of discomfort and pain the longer you receive it. She will be on alot of painkillers and there are many other things to use. I'm sure there is a super thread you can look up to find all the info. I'm sorry your family is going through this and I hope she gets to feeling better soon. Take Care, Shelly
My 23-year-old son was diagnosed with MEC high grade last March. His was also submandibular. We live in Texas so we have been making the three hour drive to MD Anderson Cancer Center in Houston. It is supposed to be one of the best cancer centers in the United States. He just had his surgery last week. He will have to use a flouride tray everyday from now on. He will start his radiation treatment soon and that is going to last for six weeks. It was such a shock to hear this news! His cousin who is also 23 has been dealing with Hodgkin's Lymphoma since August of 2010. I have been so worried about this. I can't sleep good at night. He told me this morning that people take life for granted and when something like this happens, it makes you realize just how quickly your life can be turned upside down. He told me he will never take it for granted again. And, that he will appreciate everyday that God has given him.0 -
Surgery / LatestCLSunshine said:Surgery
Hi Leo,
When is your surgery - or have you had it already? I was rereading some posts here and just wanted to check on you. I'm still fretting my scan and appointment - I can sure sympathize with your worry from the time of the scan to the surgery. I will say a prayer for you. Peace to you and your family.
How are you getting on? It is a difficult stage the waiting - very frustrating. I hope you are coping ok - how is the little one?
I had my surgery last Monday, still in hospital as I had a little complication but nothing too major. My drain has just been taken out and I should be going home tomorrow. The neck dissection looks dramatic with a big scar, but the tonsil is definitely the most painful aspect of the surgery.
With the painkillers it's still tolerable though, I'm sure many people have worse. My surgeon used a special 'transoral' laser for my tongue biopsy as it is a clinical speciality of his and that is much less sore.
I have missed the kids - desperate to see them but didn't want them to be scared or worried by the big scar and the drain etc. so my wife hasn't brought them in (plus UK hospitals are ridden with MRSA etc). The good news about my staying in this long is they will take out my staples before I go - I was worried they would scare Charlotte! She is 3 but very switched on, she wouldn't have liked them at all!
Surgery can be quite tough, but we heal from it and I think my team are trying to help me avoid treatment if they can. If my neck nodes are clean then the chances are I will for now. I get the feeling my oncologist thinks they will be based on my scans etc. But wanted to do this to be safe as there could just be a couple of cells escaped into other nodes which a scan doesn't pick up.
The other bits were typical places an MEC primary could turn up.
With MEC there is a chance the original node could have actually been the primary. Or my immune system could have killed the primary off. I may already be cured but I expect that isn't the most likely scenario. I just hope for clean results next week from this operation because that will put me in a really, really positive position. I won't regret having it done if so or feel that I have gone through this for nothing because I wanted to be safe.
When are your scan and results? Please do keep me updated, I am just a step ahead of you so will do my very best to help you know what comes next. We are both young parents - too young for this! But our little ones will help us find the courage to make it through and beat, this. Don't forgets MEC is a very curable form of cancer, it is generally what he calls 'indolent' and not prone to spreading.
If you look up salivary gland cancer on the American cancer society website, it actually says 'advanced' salivary gland cancer is so rare they are still in the clinical trials stage for chemotherapy (basically it doesn't usually get past surgery and radio).
The most likely place it moves is your lymph nodes but it seems yours hasn't even got there yet as you don't have a neck lump do you? If not you should be in a great position to beat this. I'm not your doctor so don't know your exact circumstances but my oncologist is an amazing guy - an H&N oncology professor who actually sits on panels that make national policy decisions in the UK - so I'm passing on what he tells me about our form of cancer in general as it may be of comfort (it has a been to me!).
He has called my situation 'incredibly' and 'eminently' curable on several occasions and I'm taking huge encouragement from that.
All the best
Leo0 -
Not FairRachel_Lynn said:My 23-year-old son was
My 23-year-old son was diagnosed with MEC high grade last March. His was also submandibular. We live in Texas so we have been making the three hour drive to MD Anderson Cancer Center in Houston. It is supposed to be one of the best cancer centers in the United States. He just had his surgery last week. He will have to use a flouride tray everyday from now on. He will start his radiation treatment soon and that is going to last for six weeks. It was such a shock to hear this news! His cousin who is also 23 has been dealing with Hodgkin's Lymphoma since August of 2010. I have been so worried about this. I can't sleep good at night. He told me this morning that people take life for granted and when something like this happens, it makes you realize just how quickly your life can be turned upside down. He told me he will never take it for granted again. And, that he will appreciate everyday that God has given him.
So sorry to hear of two so young having to deal with cancer. I feel hard done to at 34 years old, but 23 is crazy young and will make them grow up way before they should.
I wish them both the very best in their recoveries.
Leo0 -
Hey LeoLeoS2323 said:Not Fair
So sorry to hear of two so young having to deal with cancer. I feel hard done to at 34 years old, but 23 is crazy young and will make them grow up way before they should.
I wish them both the very best in their recoveries.
Leo
We both went through almost the same stuff for MEC. And now we even look the same! Your swelling will go down fairly fast so don't fret. If you want to see what mine looked like after surgery, go to my expressions page. I posted some pictures there.
Heal Well my UK Friend,
Tommy0 -
Hey Tommytommyodavey said:Hey Leo
We both went through almost the same stuff for MEC. And now we even look the same! Your swelling will go down fairly fast so don't fret. If you want to see what mine looked like after surgery, go to my expressions page. I posted some pictures there.
Heal Well my UK Friend,
Tommy
Hi Tommy
Yes your case and mine seem to be following a very similar path! For what it's worth I'm glad the individual whose experience has been most similar to mine is such a positive, encouraging person as you are! Excellent role model for me in this.
I will have a look at the scar and try to post pics of mine. I am on my way home shortly. I had my staples out this morning and the scar doesn't look anywhere near as dramatic! Very excited about seeing the ids very soon!
How is your post rads situation coming along tommy? Taste etc?
All the very best
Leo0 -
Also...tommyodavey said:Hey Leo
We both went through almost the same stuff for MEC. And now we even look the same! Your swelling will go down fairly fast so don't fret. If you want to see what mine looked like after surgery, go to my expressions page. I posted some pictures there.
Heal Well my UK Friend,
Tommy
I noted your tumor was found BOT. My discharge sheet notes 'prominent lymphoid tissue at left Tongue base'. Maybe they found it?
That would be a good thing, finding the 'unknown primary'. At least we could move forward with a definite plan and hopefully cure it for good.
Kind of strange hoping for them to find cancer! :-) results tomorrow so we will see...
All the best
Leo0 -
Glad you're getting to go home!LeoS2323 said:Also...
I noted your tumor was found BOT. My discharge sheet notes 'prominent lymphoid tissue at left Tongue base'. Maybe they found it?
That would be a good thing, finding the 'unknown primary'. At least we could move forward with a definite plan and hopefully cure it for good.
Kind of strange hoping for them to find cancer! :-) results tomorrow so we will see...
All the best
Leo
Leo, glad you're going home....I'm still waiting for my journey to begin, next Monday!!
Stay positive!!!0 -
Yeah Leo!!!LeoS2323 said:Also...
I noted your tumor was found BOT. My discharge sheet notes 'prominent lymphoid tissue at left Tongue base'. Maybe they found it?
That would be a good thing, finding the 'unknown primary'. At least we could move forward with a definite plan and hopefully cure it for good.
Kind of strange hoping for them to find cancer! :-) results tomorrow so we will see...
All the best
Leo
It's homeward bound for YOU!! Great news
. I know exactly what you mean about being glad they may have found the "unknown primary"....I had nervous days before going to find out about the PET, since my ENT couldn't see anything when he scoped me....I hope that's precisely what it means on your discharge papers...
BTW...have you even flown a kite? Ditto did that, and I'm still smiling about it...if you haven't you have time before rads begin...
p0 -
Finished Radiationphrannie51 said:Yeah Leo!!!
It's homeward bound for YOU!! Great news. I know exactly what you mean about being glad they may have found the "unknown primary"....I had nervous days before going to find out about the PET, since my ENT couldn't see anything when he scoped me....I hope that's precisely what it means on your discharge papers...
BTW...have you even flown a kite? Ditto did that, and I'm still smiling about it...if you haven't you have time before rads begin...
p
Leo,
I finished on April 3rd and really expected to be in good shape by now. For the most part I'm doing well. My taste buds came back to about 80-90% just a few days ago. Sweet is still not operating correctly.
A few throat sores popped up last week so the Magic Mouthwash is still being used, but overall my eating is almost back to normal. My cough is getting better and better by the day. Kept aspirating for so long I think some liquid got down into my lungs somehow. I have a sharp pain below my right breast that feels just like Pleurisy. I had it as a teenager and know what it feels like. Last time I had a bout with bad Bronchitis so that explained that. This one I'm not sure, it could just be a pulled muscle from coughing so hard. Wednesday I see my Rad Onc and will mention it.
The healing is slow and I'm impatient. Just the last two days I haven't felt the need to take a nap during the day so now I want to go to work again. My wife says "chill baby" and I'm a good obeying husband so I'll take it easy for a bit longer.
So they think the primary may be BOT? Yes, I agree it would be best to know where it is and remove it. Then you can move on to a complete recovery. If not, the radiation will kill whatever is left. Are you getting Rads?
Glad to hear you're healing well,
Tommy0 -
Radical / Selectivetommyodavey said:Finished Radiation
Leo,
I finished on April 3rd and really expected to be in good shape by now. For the most part I'm doing well. My taste buds came back to about 80-90% just a few days ago. Sweet is still not operating correctly.
A few throat sores popped up last week so the Magic Mouthwash is still being used, but overall my eating is almost back to normal. My cough is getting better and better by the day. Kept aspirating for so long I think some liquid got down into my lungs somehow. I have a sharp pain below my right breast that feels just like Pleurisy. I had it as a teenager and know what it feels like. Last time I had a bout with bad Bronchitis so that explained that. This one I'm not sure, it could just be a pulled muscle from coughing so hard. Wednesday I see my Rad Onc and will mention it.
The healing is slow and I'm impatient. Just the last two days I haven't felt the need to take a nap during the day so now I want to go to work again. My wife says "chill baby" and I'm a good obeying husband so I'll take it easy for a bit longer.
So they think the primary may be BOT? Yes, I agree it would be best to know where it is and remove it. Then you can move on to a complete recovery. If not, the radiation will kill whatever is left. Are you getting Rads?
Glad to hear you're healing well,
Tommy
Hey Tommy
Sounds like you are coping with everything with your usual calm assurance! Glad the cough is improving and a good proportion of your taste is back, and I hope the right sided pain doesn't prove to be anything too major.
Looked at your scar pics - interesting to see yours went right across both sides, but wasn't it just one side that was dissected? There are some differences in the dissections we have had, as yours was a 'radical' and mine was 'selective'. I looked up the differences and it seems the selective spares certain nerves while the radical doesn't. Not sure I understand why this is, surely they should always be trying to spare nerves and function? I couldn't find anything to explain in simple terms why some have to be radical (this does explain the differences in our shoulder function post surgery).
My surgeon was very thorough with the nodes - he went right from level I to level V so every level, but my function remains near perfect bar a little stiffness. The tonsil and BOT were extremely sore yesterday, almost unbearable to be honest. But I slept deep being back in my own bed and woke feeling like I had done done healing this morning - hopefully the pain has peaked but I'm not counting on it!
With regards to the rads - I will know today. All my scans have shown nothing basically - PET, MRI, CT. no other nodes outside normal ranges, no sign of the primary. So there are several directions it could go. Perfect outcome - no spread to any other nodes, they find a tiny primary and removed with clear margins so no treatment may be cured. Other possible outcomes are: nothing found at all for which he had recommended no treatment, monthly checkups and annual PET scans to monitor me. If a few cells escaped into any other nodes aside the one they removed I will be having rads to the neck to be safe. If they found the primary and it's a bit bigger then I will be having rads to wherever it is they find it.
Out of interest am I right in saying you didn't get the PEG? Unless my onc suggests otherwise I am going to try to do it without. I am 6"3 230lbs so about the size of an NFL tight end or possession receiver - I think I have the bulk to get through one lot without it and I hope one round is all I'd need.
I have my pathology results this afternoon around 5pm UK time so I will know exactly where I stand later today. Wish me luck!
All the best
Leo0 -
New to ForumLeoS2323 said:Radical / Selective
Hey Tommy
Sounds like you are coping with everything with your usual calm assurance! Glad the cough is improving and a good proportion of your taste is back, and I hope the right sided pain doesn't prove to be anything too major.
Looked at your scar pics - interesting to see yours went right across both sides, but wasn't it just one side that was dissected? There are some differences in the dissections we have had, as yours was a 'radical' and mine was 'selective'. I looked up the differences and it seems the selective spares certain nerves while the radical doesn't. Not sure I understand why this is, surely they should always be trying to spare nerves and function? I couldn't find anything to explain in simple terms why some have to be radical (this does explain the differences in our shoulder function post surgery).
My surgeon was very thorough with the nodes - he went right from level I to level V so every level, but my function remains near perfect bar a little stiffness. The tonsil and BOT were extremely sore yesterday, almost unbearable to be honest. But I slept deep being back in my own bed and woke feeling like I had done done healing this morning - hopefully the pain has peaked but I'm not counting on it!
With regards to the rads - I will know today. All my scans have shown nothing basically - PET, MRI, CT. no other nodes outside normal ranges, no sign of the primary. So there are several directions it could go. Perfect outcome - no spread to any other nodes, they find a tiny primary and removed with clear margins so no treatment may be cured. Other possible outcomes are: nothing found at all for which he had recommended no treatment, monthly checkups and annual PET scans to monitor me. If a few cells escaped into any other nodes aside the one they removed I will be having rads to the neck to be safe. If they found the primary and it's a bit bigger then I will be having rads to wherever it is they find it.
Out of interest am I right in saying you didn't get the PEG? Unless my onc suggests otherwise I am going to try to do it without. I am 6"3 230lbs so about the size of an NFL tight end or possession receiver - I think I have the bulk to get through one lot without it and I hope one round is all I'd need.
I have my pathology results this afternoon around 5pm UK time so I will know exactly where I stand later today. Wish me luck!
All the best
Leo
Hello, my name is Michele and I'm here with my 64 year old mother Victoria. She was DX with MEC in January of this year. Her's was a small bump on the right side of her nose. She thought an ingrown pimple, it didn't go away so off the doctor she went. They said it was an infected membrane, 2 months later still there, went in & to do a biopsy, but did a rhinoplasty and the bump was still there, so 4 weeks later he did a needle biopsy to see what is was, couldn't get any thing from it. However, that ticked the bump off and it started to grow rapidly, 3 weeks after that, she went in for another biopsy, (This would be the first one!) and they found that it was cancer thinking it a common type. Two days after that she was schedule for surgery, but when we were in pre-op waiting the doctor came in to tell us it was a high grade MEC. She went in and had to have half of her nose and part of her cheek bone removed, obviously very devastating. (Even though she 64 she naturally looks 50 a beautiful lady) a week after surgery she had to go in again because the margins weren't clear, so he had to go even wider and deeper she now has a huge hole in the middle of her face. Mom had my dad cover every mirror in the house as she didn't want to see herself, not out of vanity, but shock! A week after that she went in for reconstruction,(not plastic surgery yet) they had to cut her forehead bring down the skin graft and take cartilage from both ears to help build a nose as well as 2 metal plates. (Praise God the skin graft took) they also put a stint in her eye to keep the duct from closing during radiation. While at a check up she saw her reflection & freaked saying she looked like a monster. It just about killed dad & I. 4 weeks after surgery mom went in for the CT mask for radiation, And then she noticed A screw from the plate came through her gums so she had to go back in for him to fix that before radiation could start. Then radiation wanted to do the CT mask over and this time with her mouth open, anything that could go wrong has! She has to go to the doctor weekly to have the crusties ( bugers) removed, since all her sinus's & nasal cavity has been removed. This can be painful because the doctor pulls them out while attached to the plate & skin. She has been in radiation for 10 days her radiation hits 9 different spots at 2-3 minutes each spot, that's 25 mins. Of radiation with her mouth open and she has 20 more to go. Yesterday she lost it and cried she didn't think she could do any more radiation due to her sore throat & mouth and the sores. but after prayer she felt better. This is what brought me to this site and we thank you for all of your insights They have helped Through this awful, ugly journey she feels Jesus carrying her. We are believers and couldn't get through this without Him.
I'm sure all of you have horror stories as well and I am in no way minimizing what each of you has gone through. We will be praying for all of as well.0 -
Hi Michelle & VictoriaDing said:New to Forum
Hello, my name is Michele and I'm here with my 64 year old mother Victoria. She was DX with MEC in January of this year. Her's was a small bump on the right side of her nose. She thought an ingrown pimple, it didn't go away so off the doctor she went. They said it was an infected membrane, 2 months later still there, went in & to do a biopsy, but did a rhinoplasty and the bump was still there, so 4 weeks later he did a needle biopsy to see what is was, couldn't get any thing from it. However, that ticked the bump off and it started to grow rapidly, 3 weeks after that, she went in for another biopsy, (This would be the first one!) and they found that it was cancer thinking it a common type. Two days after that she was schedule for surgery, but when we were in pre-op waiting the doctor came in to tell us it was a high grade MEC. She went in and had to have half of her nose and part of her cheek bone removed, obviously very devastating. (Even though she 64 she naturally looks 50 a beautiful lady) a week after surgery she had to go in again because the margins weren't clear, so he had to go even wider and deeper she now has a huge hole in the middle of her face. Mom had my dad cover every mirror in the house as she didn't want to see herself, not out of vanity, but shock! A week after that she went in for reconstruction,(not plastic surgery yet) they had to cut her forehead bring down the skin graft and take cartilage from both ears to help build a nose as well as 2 metal plates. (Praise God the skin graft took) they also put a stint in her eye to keep the duct from closing during radiation. While at a check up she saw her reflection & freaked saying she looked like a monster. It just about killed dad & I. 4 weeks after surgery mom went in for the CT mask for radiation, And then she noticed A screw from the plate came through her gums so she had to go back in for him to fix that before radiation could start. Then radiation wanted to do the CT mask over and this time with her mouth open, anything that could go wrong has! She has to go to the doctor weekly to have the crusties ( bugers) removed, since all her sinus's & nasal cavity has been removed. This can be painful because the doctor pulls them out while attached to the plate & skin. She has been in radiation for 10 days her radiation hits 9 different spots at 2-3 minutes each spot, that's 25 mins. Of radiation with her mouth open and she has 20 more to go. Yesterday she lost it and cried she didn't think she could do any more radiation due to her sore throat & mouth and the sores. but after prayer she felt better. This is what brought me to this site and we thank you for all of your insights They have helped Through this awful, ugly journey she feels Jesus carrying her. We are believers and couldn't get through this without Him.
I'm sure all of you have horror stories as well and I am in no way minimizing what each of you has gone through. We will be praying for all of as well.
Firstly welcome to the forum. I have found this to be a place of great understanding and information and I hope it can be for you too.
I am one of the MEC sufferers on here, it is a rare cancer. It's hard for me to relate to what you have had to go through Victoria, it sounds like you have had a torrid time not least because of the grade and location of your tumor and the effect it has had on you physically.
The posters on here I know who have MEC are all of either low or intermediate grade as far as I know, however I believe from previous reading that MEC still has a good rate of cure even with high grade as long as it is caught early enough, which it sounds like it has it your case.
I know this is of little consolation, but the prominent place in which it has appeared at least drew your attention to it immediately - meaning it has been quickly dealt with. Are you scheduled to have a PET scan or any other type of scan on the near future?
The location of your tumor itself sounds really unusual to me - MEC is a salivary gland cancer so I didn't realise it could manifest in your nose. Did the doctors discuss this with you at all? Where is your treatment taking place? Is it a large cancer centre or a local one?
I can't see any mention of scans in your post - usually after diagnosis scans are the first thing to take place to see exactly what the situation is. The reason I ask is your process so far sounds a little unusual, but it may just be there are some things you haven't mentioned so I am trying to get the whole picture.
You really do sound like you have had an incredibly tough time. My experience with MEC and I think the majority of those here have been very different so I am just trying to understand yours a little better so I and others here can offer advice and support.
What I can offer right now is my thoughts, prayers and best wishes that you can get through this.
All the best
Leo0 -
High GradeLeoS2323 said:Hi Michelle & Victoria
Firstly welcome to the forum. I have found this to be a place of great understanding and information and I hope it can be for you too.
I am one of the MEC sufferers on here, it is a rare cancer. It's hard for me to relate to what you have had to go through Victoria, it sounds like you have had a torrid time not least because of the grade and location of your tumor and the effect it has had on you physically.
The posters on here I know who have MEC are all of either low or intermediate grade as far as I know, however I believe from previous reading that MEC still has a good rate of cure even with high grade as long as it is caught early enough, which it sounds like it has it your case.
I know this is of little consolation, but the prominent place in which it has appeared at least drew your attention to it immediately - meaning it has been quickly dealt with. Are you scheduled to have a PET scan or any other type of scan on the near future?
The location of your tumor itself sounds really unusual to me - MEC is a salivary gland cancer so I didn't realise it could manifest in your nose. Did the doctors discuss this with you at all? Where is your treatment taking place? Is it a large cancer centre or a local one?
I can't see any mention of scans in your post - usually after diagnosis scans are the first thing to take place to see exactly what the situation is. The reason I ask is your process so far sounds a little unusual, but it may just be there are some things you haven't mentioned so I am trying to get the whole picture.
You really do sound like you have had an incredibly tough time. My experience with MEC and I think the majority of those here have been very different so I am just trying to understand yours a little better so I and others here can offer advice and support.
What I can offer right now is my thoughts, prayers and best wishes that you can get through this.
All the best
Leo
Michele,
First off, I just want to say how sorry I am for your dear mother and her suffering. Like Leo said, most of the MEC cases we've seen are of a lower grade. The doctors will be able to tell you a lot more than we can. It all sounds so complex it must be very hard to understand exactly what is going on with her.
Try to be the best support coach you can be for her right now. The radiation therapy is one of the most important treatments to get rid of her cancer. Yes it is very painful and will be hard to watch. She probably won't want to even finish it but that is where you and the family come it. It is so very important that she see this through to the end. It will end in a few weeks so just keep telling her to stick with it. All the bad symptoms of it will end some day and then she'll be glad she saw it through.
You have my thoughts and prayers in this trying time.
Tommy
P.S. Leo, no I did not have a PEG. But just do whatever your doctor says. They know best, most of the time. And it sounds like they caught yours really early. Mine had many years to grow, that explains the lymph nodes. And BTW, I think there are mucous membranes in the nose. (glands) There has to be if there was a tumor there. A lot of salivary glands are very small, like the ones on the BOT. Mine was a weird place too.0 -
PEGtommyodavey said:High Grade
Michele,
First off, I just want to say how sorry I am for your dear mother and her suffering. Like Leo said, most of the MEC cases we've seen are of a lower grade. The doctors will be able to tell you a lot more than we can. It all sounds so complex it must be very hard to understand exactly what is going on with her.
Try to be the best support coach you can be for her right now. The radiation therapy is one of the most important treatments to get rid of her cancer. Yes it is very painful and will be hard to watch. She probably won't want to even finish it but that is where you and the family come it. It is so very important that she see this through to the end. It will end in a few weeks so just keep telling her to stick with it. All the bad symptoms of it will end some day and then she'll be glad she saw it through.
You have my thoughts and prayers in this trying time.
Tommy
P.S. Leo, no I did not have a PEG. But just do whatever your doctor says. They know best, most of the time. And it sounds like they caught yours really early. Mine had many years to grow, that explains the lymph nodes. And BTW, I think there are mucous membranes in the nose. (glands) There has to be if there was a tumor there. A lot of salivary glands are very small, like the ones on the BOT. Mine was a weird place too.
Hey Tommy - I guess that question is slightly out of date since my good news!
But of course some time in the future I may still have to make that choice, so thanks as ever for the advice.
All the best my friend - and that spicy stuff will be on the menu soon...:-) I love the really hot stuff myself, my wife puts fresh chillies in many of her creations so I will make sure to max out on it just in case (as soon as the mouth is back to normal operations - the BOT is still a little sore although the tonsil is pretty much fully healed now.
As a nation we are bigger on spicy Indian curries than Mexican over here, although I personally love Mexican too.
Leo0 -
MECtommyodavey said:High Grade
Michele,
First off, I just want to say how sorry I am for your dear mother and her suffering. Like Leo said, most of the MEC cases we've seen are of a lower grade. The doctors will be able to tell you a lot more than we can. It all sounds so complex it must be very hard to understand exactly what is going on with her.
Try to be the best support coach you can be for her right now. The radiation therapy is one of the most important treatments to get rid of her cancer. Yes it is very painful and will be hard to watch. She probably won't want to even finish it but that is where you and the family come it. It is so very important that she see this through to the end. It will end in a few weeks so just keep telling her to stick with it. All the bad symptoms of it will end some day and then she'll be glad she saw it through.
You have my thoughts and prayers in this trying time.
Tommy
P.S. Leo, no I did not have a PEG. But just do whatever your doctor says. They know best, most of the time. And it sounds like they caught yours really early. Mine had many years to grow, that explains the lymph nodes. And BTW, I think there are mucous membranes in the nose. (glands) There has to be if there was a tumor there. A lot of salivary glands are very small, like the ones on the BOT. Mine was a weird place too.
Thanks for responding. We live close to Loma Linda University Medical Center so this is where mom's treatments are taking place. They are using proton to boost radiation. She has not had a PET scan yet, that is one of questions we will ask today with The Dr. Thanks, Michele0 -
SurgeryLeoS2323 said:Surgery / Latest
How are you getting on? It is a difficult stage the waiting - very frustrating. I hope you are coping ok - how is the little one?
I had my surgery last Monday, still in hospital as I had a little complication but nothing too major. My drain has just been taken out and I should be going home tomorrow. The neck dissection looks dramatic with a big scar, but the tonsil is definitely the most painful aspect of the surgery.
With the painkillers it's still tolerable though, I'm sure many people have worse. My surgeon used a special 'transoral' laser for my tongue biopsy as it is a clinical speciality of his and that is much less sore.
I have missed the kids - desperate to see them but didn't want them to be scared or worried by the big scar and the drain etc. so my wife hasn't brought them in (plus UK hospitals are ridden with MRSA etc). The good news about my staying in this long is they will take out my staples before I go - I was worried they would scare Charlotte! She is 3 but very switched on, she wouldn't have liked them at all!
Surgery can be quite tough, but we heal from it and I think my team are trying to help me avoid treatment if they can. If my neck nodes are clean then the chances are I will for now. I get the feeling my oncologist thinks they will be based on my scans etc. But wanted to do this to be safe as there could just be a couple of cells escaped into other nodes which a scan doesn't pick up.
The other bits were typical places an MEC primary could turn up.
With MEC there is a chance the original node could have actually been the primary. Or my immune system could have killed the primary off. I may already be cured but I expect that isn't the most likely scenario. I just hope for clean results next week from this operation because that will put me in a really, really positive position. I won't regret having it done if so or feel that I have gone through this for nothing because I wanted to be safe.
When are your scan and results? Please do keep me updated, I am just a step ahead of you so will do my very best to help you know what comes next. We are both young parents - too young for this! But our little ones will help us find the courage to make it through and beat, this. Don't forgets MEC is a very curable form of cancer, it is generally what he calls 'indolent' and not prone to spreading.
If you look up salivary gland cancer on the American cancer society website, it actually says 'advanced' salivary gland cancer is so rare they are still in the clinical trials stage for chemotherapy (basically it doesn't usually get past surgery and radio).
The most likely place it moves is your lymph nodes but it seems yours hasn't even got there yet as you don't have a neck lump do you? If not you should be in a great position to beat this. I'm not your doctor so don't know your exact circumstances but my oncologist is an amazing guy - an H&N oncology professor who actually sits on panels that make national policy decisions in the UK - so I'm passing on what he tells me about our form of cancer in general as it may be of comfort (it has a been to me!).
He has called my situation 'incredibly' and 'eminently' curable on several occasions and I'm taking huge encouragement from that.
All the best
Leo
Hi Leo! So glad to get an update on you and glad your surgery went well. I assume you are now back at home with your family and healing up. How are your little ones? I bet very happy to have their Dad home!
Since I last posted on here, I've had my CT scan, visit with the specialist and surgery just yesterday. I'm very lucky mine was so small and caught so early. Even as small as it was, they had to take more than expected to obtain clear margins - they had to scrape bone and cut a little into the soft palate. Right now I have a small hole in there that will allow liquids to come out my nose, but they said it should heal up completely - worse case I'll have a very tiny hole. It hadn't spread at all, so I should now be cured. I'll have to have a check-up in two weeks and another CT scan in 2 months as a base for my new 'normal'.
Sounds like we both have very good doctors. My doctor is nationally recognized for dealing with these types of tumors. He has written a book and several chapters in text books. He also told me we're going to cure this. And said I was very fortunate to have caught it so early. I definitely had it easier than many others with this.
I'm so glad to be on the recovery side now and I know my little girl is also relieved. Even though we were very careful not to say too much, it still caused her some worry.
I hope you are enjoying being on the recovery side too. All the best to you and your family! Stay in touch.
Cindy0 -
MEC High Gradekingcole42005 said:Hi Dee,
I'm sorry about your sister and what you and your family must be going through. A cancer diagnosis is terrifying, especially so for young children. You must be pretty young yourself and I can't imagine what you must be thinking. I was diagnosed with MEC Sept. 2010. I had a high grade tumor in my submandibular, on the left side under my tongue. Dr. Eisele at UCSF removed the left floor of my mouth and did a skin graft from my thigh. I was in the hospital for 10 days, with a feeding tube. I also had a neck dissection to remove the lymph nodes in my neck. I believe this is what your sister would be going through. It is tough, but it sounds like she has great support, with a big sister like you watching out for her. It is painful, but they will give her meds for that. Also she might not be able to talk for awhile, I used a pad of paper constantly. She might have to have radiation. They will fit her with a special mask that holds her in place while a machine radiates the cancerous area. The radiation does cause alot of discomfort and pain the longer you receive it. She will be on alot of painkillers and there are many other things to use. I'm sure there is a super thread you can look up to find all the info. I'm sorry your family is going through this and I hope she gets to feeling better soon. Take Care, Shelly
My 23-year-old son was diagnosed with this last March. He had his first surgery in Dallas with his ENT doctor. That was when they told us what it was. We got him into MD Anderson in Houston where he had a second surgery to remove what was left behind. He went through six weeks of radiation. We recently went back to MD Anderson for his checkup and CT scan last week. I wasn't expecting anything but good news since he had the two surgeries and the radiation. The doctor told us that there was a lump on the scan that needed to be biopsied. The doctor did the biopsy on that lump and on a lymph node that he said looked a little enlarged. Both came back positive for cancer. I have been a total basket case. No parent wants to see their child go through this! He is having the same surgery you had. It is being done on October 15. The doctor said he would have to get skin grafting, the feeding tube, and he also mentioned a temporary tracheotomy. I have been so scared. He hasn't been eating good at all. His sister calls me randomly throughout the day crying, and his younger brother has asked me a few times if he is going to die. This whole thing has been a nightmare!0 -
Hi RL ...rlcombs70 said:MEC High Grade
My 23-year-old son was diagnosed with this last March. He had his first surgery in Dallas with his ENT doctor. That was when they told us what it was. We got him into MD Anderson in Houston where he had a second surgery to remove what was left behind. He went through six weeks of radiation. We recently went back to MD Anderson for his checkup and CT scan last week. I wasn't expecting anything but good news since he had the two surgeries and the radiation. The doctor told us that there was a lump on the scan that needed to be biopsied. The doctor did the biopsy on that lump and on a lymph node that he said looked a little enlarged. Both came back positive for cancer. I have been a total basket case. No parent wants to see their child go through this! He is having the same surgery you had. It is being done on October 15. The doctor said he would have to get skin grafting, the feeding tube, and he also mentioned a temporary tracheotomy. I have been so scared. He hasn't been eating good at all. His sister calls me randomly throughout the day crying, and his younger brother has asked me a few times if he is going to die. This whole thing has been a nightmare!
So sorry you are having to endure this...
I'm sure you already know, MD Anderson is tops in this area your son is experiencing...
..also, there are many survivors on here...as you can see if you poke through just the 1st page of threads...
....I lost my Dad and brother the same year to cancer, and then I had to tell my five children ages 2 - 13 I had cancer Base of Tongue Stage III.
Now I am 8 months past my last radiation and I have been given NED (no evidence of disease) ...there is another guy on here (names Pat, longtermsurvivor is his screen name) and boy has he been through it 3 TIMES, the first time 10 years ago..and guess what, his most recent time was only 7 or 8 months ago and he too is NED!!
I won't pretend it's not scary and there are no words, I was fortunate that it was me with cancer and not one of my kids, so I won't pretend I can relate...but my heart goes out to you and I whispered a prayer for your son (and all of you his family) right before I hit the post button.
Keep us posted,
Tim0
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