Tonsil cancer-Mucoepidermold carcinoma
The path to diagnosis started with the appearance of a small lump in the area of my neck under the left jaw. A CTscan revealed a mass 3.4cm by 1.5cm. A fine-needle biopsy revealed what was initially classified as squamous cell carcinoma in the swollen lymph node. A subsequent PET scan identified the primary site as being in my left tonsil. Fortunately no other activity was found.
The next step was a panendoscopy (inspection) of mouth, throat, etc. - together with a tonsilectomy for both of my tonsils. (I'm early in this process, but the recovery from the tonsilectomy has been about as painful as anything I ever want to endure--but, I digress.)
A biopsy of the tonsil revealed a new diagnosis of mucoepidermold cancer vs squamous cell.
From what I've been able to learn, which is not much, the treatment is virtually the same for the two types.
My planned treatment program starts February 21st, and consists of seven (7) weeks of radiation combined with a week's worth of chemotheraphy during weeks 1 and 5. I have already made arrangements for a PEG feeding tube to be installed 4 days prior to the start of radiation.
I have a pretty good idea of what I'm facing, but I'm just starting to get my arms around the whole idea. If I did not KNOW that I have cancer, I would say that I was healthy and doing pretty well.
First question, has anyone else heard of a diagnosis of tonsil cancer involving muceopidermold carcinoma? I would love to hear anything you can add.
Second question, regardless of the type of tonsil cancer, can anyone who has gone thru what I'm facing offer any suggestions of things to:
1. consider;
2. questions to ask;
3. things you did or did not do, that you would change,
if (God forbid), you had to do it over again?
4. did you bother with second opinions?
Thanks, any and all comments will be appreciated
Len
Comments
-
mucoepidermoid carcinoma
Hi Len,
I was also diagnosed with mucoepidermoid carcinoma (MEC), but mine was in the hard palate and then grew into my sinuses. nkimber on here also has MEC, but hers is around her larynx I believe as well as she has some spread...she can tell you better what she is going through. kingcole has MEC of the parotid gland. we are the only ones online right now who have MEC and/or have finished treatment.
I had mine surgically removed and then when it was determined to be intermediate grade I had 30 radiation treatments using IMRT. the main thing to know about MEC is that it means you have a complex multiple cell tumor. however, it responds best to surgery and radiation. I don't know about chemo for it as it is only helpful in some cases. Nkimber has had some success and some non-success with the chemo she had been on. we are hopeful that the trial she is on right now is the answer for her. MEC can occur in any mucous secreting cell or salivary glands, minor and major ones. it is a very rare cancer. most common in the parotid gland, then the hard palate, but even with the hard palate like mine there are only about a dozen cases a year. there is not a lot of research done. be careful of any stats that you read online. read the fine print if you read any of them. one had me worried and then I noticed that the average age of the patients was 65 and that the mortality rates included that all but 1 had died from natural causes, but when you looked at the numbers it looked much higher.
MEC is easier to treat than squamous cell carcinoma. they treat it very close to the same, but the cells can respond differently.
you need to ask what stage is my tumor, did they get clean margins, what grade is the tumor. then you need to ask why do they want to do chemo and radiation.
I did not bother with second opinions per se...I have friends in the medical field...I had already emailed them with my details and asked them what they would recommend. when the doctor said it was intermediate grade I already knew I was going to have radiation. I also knew I wanted IMRT. I had researched ever possible type of treatment before I saw the dr for my follow up appointment post surgery.
I used a great lotion during treatment called radiaplex rx gel...it helped keep the burns less. I also used caphosol four to ten times a day throughout treatment to help keep mucositis down. I also did daily jaw exercises as well as swallowing exercises so I didn't lose my ability to swallow or open my mouth.
there is no going around it...it hurt. when you have treatment tell your doctor if you have any pain, they will adjust your dosage...do not try to tough your way through...it will only slow down your recovery.
ask any and all questions. I was told my several of my doctors that if you were going to get cancer MEC was preferable over squamous cell carcinoma...but they never said why, beyond that it is easier to treat.
MEC has no known cause. many of the people who had been on here have survived a very long time after treatment.
I wish you the best, feel free to ask any questions you might have. I am not on every day, but I will try to answer when I am.
ekdennie0 -
Tonsil C
Hi Len,
Welcome to the board, but sorry you have need to be here. I had SCC st.4 of my right tonsil. The tonsil was the primary. Went through the same as you the now dreaded tonsillectomy. Also a right neck dissection. In my case, the worst part of the treatment. In answer to your questions, have you had your teeth checked? Mine were not in the best condition and I had several pulled by an oral surgeon. This is important because the radiation can deteriorate your jaw bones and having to get teeth pulled later can be a big ordeal. I never got a 2nd opinion because I was comfortable from the start with my team of doctors. My ENT was and still is great as are both oncologists. My ENT and Rad onco were very helpful with any pain issues I had. This is extremely important. Your body can't fight the c as well when it is fighting pain.
It is good you have found your way here before your treatment has begun. The folks here are very kind and helpful. By the way, I was diagnosed last Jan. 15th, and while I am a little different I am doing great. Got my port out last Friday and have been given a clean bill of health from all of my Doc's. So ask away and the "Family" here will come to help you through this battle. It is doable and you can beat it.
Best,
Steve0 -
MEC in left tonsilekdennie said:mucoepidermoid carcinoma
Hi Len,
I was also diagnosed with mucoepidermoid carcinoma (MEC), but mine was in the hard palate and then grew into my sinuses. nkimber on here also has MEC, but hers is around her larynx I believe as well as she has some spread...she can tell you better what she is going through. kingcole has MEC of the parotid gland. we are the only ones online right now who have MEC and/or have finished treatment.
I had mine surgically removed and then when it was determined to be intermediate grade I had 30 radiation treatments using IMRT. the main thing to know about MEC is that it means you have a complex multiple cell tumor. however, it responds best to surgery and radiation. I don't know about chemo for it as it is only helpful in some cases. Nkimber has had some success and some non-success with the chemo she had been on. we are hopeful that the trial she is on right now is the answer for her. MEC can occur in any mucous secreting cell or salivary glands, minor and major ones. it is a very rare cancer. most common in the parotid gland, then the hard palate, but even with the hard palate like mine there are only about a dozen cases a year. there is not a lot of research done. be careful of any stats that you read online. read the fine print if you read any of them. one had me worried and then I noticed that the average age of the patients was 65 and that the mortality rates included that all but 1 had died from natural causes, but when you looked at the numbers it looked much higher.
MEC is easier to treat than squamous cell carcinoma. they treat it very close to the same, but the cells can respond differently.
you need to ask what stage is my tumor, did they get clean margins, what grade is the tumor. then you need to ask why do they want to do chemo and radiation.
I did not bother with second opinions per se...I have friends in the medical field...I had already emailed them with my details and asked them what they would recommend. when the doctor said it was intermediate grade I already knew I was going to have radiation. I also knew I wanted IMRT. I had researched ever possible type of treatment before I saw the dr for my follow up appointment post surgery.
I used a great lotion during treatment called radiaplex rx gel...it helped keep the burns less. I also used caphosol four to ten times a day throughout treatment to help keep mucositis down. I also did daily jaw exercises as well as swallowing exercises so I didn't lose my ability to swallow or open my mouth.
there is no going around it...it hurt. when you have treatment tell your doctor if you have any pain, they will adjust your dosage...do not try to tough your way through...it will only slow down your recovery.
ask any and all questions. I was told my several of my doctors that if you were going to get cancer MEC was preferable over squamous cell carcinoma...but they never said why, beyond that it is easier to treat.
MEC has no known cause. many of the people who had been on here have survived a very long time after treatment.
I wish you the best, feel free to ask any questions you might have. I am not on every day, but I will try to answer when I am.
ekdennie
Thanks ek, for the great information. I have accumulated a whole page worth of questions from the last two days of probing the internet.
I do need some clarification on a few items. I understand what you mean when you refer to "stage of the tumor" , but "clean margins" and "grade of tumor" are new to me. Can you explain further or point me in right direction?
I really appreciate the recommendation for the gel and the use of caphosol. (I don't know what it is, but I sure will find out.)
As I mentioned in my reply to Steve, I'm a little concerned about the diagnosis of MEC.
I believe I do have cancer, but I need better assurance that the doctors are using the right weapon(s) against a correctly identified enemy. I have not been able to find a single specific reference to MEC of a tonsil anywhere in the last two days of searching the internet.
The radiation oncologist does NOT have my full faith and confidence and I need to solve that issue--somehow.
Any and all suggestions appreciated. Thanks and be well,
Len0 -
2nd Opinions
Hi Len, welcome.
By all means, get a 2nd even 3rd opinion, especially if you are not confident of the present diagnosis and doctors. I believe it is paramount that you have complete confidence in your medical team as you go through treatment. The rad/chemo treatment program is tough enough to get through by itself, you certainly don't need the added burden of being unsure of your doctors. No medical professional should get upset if one of their patients gets a 2nd opinion. This is serious business and you may only have 1 chance to get it right.
People react to the rads/chemo differently. There is no telling how you will react. Some have a relatively easier time of it, for others it can be very trying and difficult. Here's hoping you are one of the luckier ones!!
A good attitude is helpful during treatment. Try to maintain good nutrition, start now- eat as much of everything you enjoy now. It will be more difficult later on. Food is medicine for your body to recover from treatment.
Endeavour to get some exercise each day. It can help in your recovery & your mental health.
Use the baking soda/salt solution to gargle often. Also use L-glutamine as a gargle and swallow. These can help reduce the mouth sores that will probably come.
Finally, visit the dentist ASAP. They will probably recommend to pull any teeth that are or may become a problem.
Good luck with you treatment. Cheers
Jimbo0 -
second opinion etc
len, I would get a second opinion on how your treatment plan should progress if you are not comfortable with the diagnosis. any type of tumor can occur in any body part. you can also find MEC in the lungs or throughout the body, it is just most common in the salivary glands. it is a rare cancer. SCC (squamous cell carcinoma) is more common, as you will find when talking to people online here. regardless of tumor type everyone on here is great at offering support and advice for the type of treatments you will go through!
MEC is unique in that you need to know not just what stage of tumor it is (stage 1, stage 2, stage 3, stage 4 a or b) but your prognosis is dependent upon the grade as well (low grade, intermediate, and high grade). low grade has a better prognosis and most often only needs surgery, sometimes with radiation as a secondary treatment to help insure it doesn't come back. Intermediate grade usually is treated with surgery and radiation. high grade is treated with surgery, when possible, then radiation and chemo. sometimes the location of the tumor is hard to get to so they will opt for chemo and radiation before or in place of surgery.
clean margins: when you had surgery they took out the tumor and they took out what they expected was healthy tissue all around the tumor. the pathologist will then test to make sure that the margins (or the healthy tissue) is actually cancer free and that they have given enough of a margin around the tumor, usually around 5mm. what this means for you: clean margins mean that the tumor is less likely to grow back in that location.
when a doctor is determining a treatment plan for you they have to base it on both the location of your tumor and the type of tumor it is. there are a lot of different type of tumor that can affect any one part of the body. once they know what type it is then they can determine how to fight it.
oh, and MEC tumors are comprised of squamous cells, mucous secreting cells, and intermediate cells. in my case I had MEC clear cell variety. it might be good to get a copy of your path report, then sit in front of your computer and look up every term you don't know. you can ask your doctor to get a second opinion on the path report. they can help you determine how to go about getting that done.
it is very common to have an initial diagnosis of one thing and then to have the final path report come back different. the final path report is done by an expert who looks at the whole sample, whereas the initial diagnosis may have been based on a small sample that didn't tell the whole picture.
http://emedicine.medscape.com/article/848034-diagnosis
this website included information on cancer of the tonsil and how salivary gland tumors are the third most common type of tumor found in the tonsil.
I have to run and take care of my kids.
best of luck, huge hugs, and you will be in my thoughts and prayers.
ekdennie0 -
Trust/Faith in docs: VERY IMPORTANTJimbo55 said:2nd Opinions
Hi Len, welcome.
By all means, get a 2nd even 3rd opinion, especially if you are not confident of the present diagnosis and doctors. I believe it is paramount that you have complete confidence in your medical team as you go through treatment. The rad/chemo treatment program is tough enough to get through by itself, you certainly don't need the added burden of being unsure of your doctors. No medical professional should get upset if one of their patients gets a 2nd opinion. This is serious business and you may only have 1 chance to get it right.
People react to the rads/chemo differently. There is no telling how you will react. Some have a relatively easier time of it, for others it can be very trying and difficult. Here's hoping you are one of the luckier ones!!
A good attitude is helpful during treatment. Try to maintain good nutrition, start now- eat as much of everything you enjoy now. It will be more difficult later on. Food is medicine for your body to recover from treatment.
Endeavour to get some exercise each day. It can help in your recovery & your mental health.
Use the baking soda/salt solution to gargle often. Also use L-glutamine as a gargle and swallow. These can help reduce the mouth sores that will probably come.
Finally, visit the dentist ASAP. They will probably recommend to pull any teeth that are or may become a problem.
Good luck with you treatment. Cheers
Jimbo
I am sorry that you are facing a Head and Neck Cancer. You have found a good place to get support, experiences, and a lot of wisdom.
I am the partner/caregiver of the guy in the picture, diagnosed SCC left tonsil, stage IV, HPV+ in April 2010. He had left tonsil removed, part of his tongue and soft pallet, and a radical neck dissection, which took all the lymph nodes on the left side and the muscle. He has a skinnier neck, but not a big disfigurement. He then did 30 rads. and 5 rounds of chemo.
It is good that ekdennie can talk apples to apples with you regarding your specifc type of cancer. I am always reluctant to talk about Mark's SCC and his treatment to someone who has a different cancer type but the same location. There are some things that can be a fair comparison, but others that are not.
But what I think is true and critical to all who are diagnosed: get to a doctor that you trust and can put your full faith into. NCI (National Cancer Institute) hospitals are the best to be treated at. They are usually teaching hospitals, they draw the top notch doctors, and have the most up to date technology, equipment, and treatments. Mark was diagnosed by a local ENT who does kids tonsils, treats cancer, and everything in between. Mark was content to be treated by him because he had heard he was a good doctor. I said, "Nope, we're going to the city"...and we got an ENT who does (and developed) robotic surgery which was critical to the surgical removal of Mark's cancer. The radiology oncologist was amazing and these doctors listened to Mark's request to preserve quality of life...which he is currently living.
I think if you feel uncertain with what your doctors are saying, I say, trust your gut, and get another opinion. If a bigger, better hospital is further away, it is worth the trip(s). Who treates you and where you are treated can not be understated.
My Best to you,
Kim0 -
Tonsil cstevenl said:Tonsil C
Hi Len,
Welcome to the board, but sorry you have need to be here. I had SCC st.4 of my right tonsil. The tonsil was the primary. Went through the same as you the now dreaded tonsillectomy. Also a right neck dissection. In my case, the worst part of the treatment. In answer to your questions, have you had your teeth checked? Mine were not in the best condition and I had several pulled by an oral surgeon. This is important because the radiation can deteriorate your jaw bones and having to get teeth pulled later can be a big ordeal. I never got a 2nd opinion because I was comfortable from the start with my team of doctors. My ENT was and still is great as are both oncologists. My ENT and Rad onco were very helpful with any pain issues I had. This is extremely important. Your body can't fight the c as well when it is fighting pain.
It is good you have found your way here before your treatment has begun. The folks here are very kind and helpful. By the way, I was diagnosed last Jan. 15th, and while I am a little different I am doing great. Got my port out last Friday and have been given a clean bill of health from all of my Doc's. So ask away and the "Family" here will come to help you through this battle. It is doable and you can beat it.
Best,
Steve
Hi Steve;
Thanks for the post and your kind attitude. I am new to this, but I am assuming that SCC stands for Squamous Cell Carcinoma. Is that correct?
Surgery has not been mentioned as a treatment option. That may be because the cancerous lymph node is located between my jugular vein and the carotid artery, but I don't really know why. It was mentioned that surgery could be disfiguring, cause functional loss and that they normally used a combination of chemo and radiation for head and neck cancers.
At the present time I'm really concerned about two issues.
The first is whether or not the diagnosis is correct about the type of cancer involved. It took 12 days after the tonsilectomy to come back with the final biopsy findings of mucoepidermold carcinoma. A number of biopsy "nips" were also taken during the procedure and they all came back negative. They gave me an explanation for the change in identification, but I did not feel convinced that they were sure. I'm not sure how you go about getting a second opinion on a pathology report, but I think I want one.
The second is somewhat related to the first. During my first meeting with the radiation oncologist (on Wed, Feb 2nd), he explained that muceopidermold carcinoma (MEC for short) is most commonly related to minor salivary gland tumors. Now this is where is gets fuzzy for me. I swear I heard him say that as a result of the type of cancer now identified, that he was going to target the the salivary glands in the left side (the lump side) of my neck, with a lower dosage going to the salivary glands on the right side. My wife was present and she remembers it the same way. Keep in mind that the PET scan only showed cancer in the lymph node and the left tonsil - no where else. Based upon what I've learned in the last few days, I really wonder if the RO knows how to treat this situation.
As for my teeth, they are not great, but there is no known dental work required at this time. I won't make my story longer, but I actually thought the "lump" was related to problems I was having with a couple of teeth. After the teeth were extracted, the lump remained and I sought further advise.
Any and all comments are appreciated as I think I need all the help I can get.
Len0 -
second opinion, etc.ekdennie said:second opinion etc
len, I would get a second opinion on how your treatment plan should progress if you are not comfortable with the diagnosis. any type of tumor can occur in any body part. you can also find MEC in the lungs or throughout the body, it is just most common in the salivary glands. it is a rare cancer. SCC (squamous cell carcinoma) is more common, as you will find when talking to people online here. regardless of tumor type everyone on here is great at offering support and advice for the type of treatments you will go through!
MEC is unique in that you need to know not just what stage of tumor it is (stage 1, stage 2, stage 3, stage 4 a or b) but your prognosis is dependent upon the grade as well (low grade, intermediate, and high grade). low grade has a better prognosis and most often only needs surgery, sometimes with radiation as a secondary treatment to help insure it doesn't come back. Intermediate grade usually is treated with surgery and radiation. high grade is treated with surgery, when possible, then radiation and chemo. sometimes the location of the tumor is hard to get to so they will opt for chemo and radiation before or in place of surgery.
clean margins: when you had surgery they took out the tumor and they took out what they expected was healthy tissue all around the tumor. the pathologist will then test to make sure that the margins (or the healthy tissue) is actually cancer free and that they have given enough of a margin around the tumor, usually around 5mm. what this means for you: clean margins mean that the tumor is less likely to grow back in that location.
when a doctor is determining a treatment plan for you they have to base it on both the location of your tumor and the type of tumor it is. there are a lot of different type of tumor that can affect any one part of the body. once they know what type it is then they can determine how to fight it.
oh, and MEC tumors are comprised of squamous cells, mucous secreting cells, and intermediate cells. in my case I had MEC clear cell variety. it might be good to get a copy of your path report, then sit in front of your computer and look up every term you don't know. you can ask your doctor to get a second opinion on the path report. they can help you determine how to go about getting that done.
it is very common to have an initial diagnosis of one thing and then to have the final path report come back different. the final path report is done by an expert who looks at the whole sample, whereas the initial diagnosis may have been based on a small sample that didn't tell the whole picture.
http://emedicine.medscape.com/article/848034-diagnosis
this website included information on cancer of the tonsil and how salivary gland tumors are the third most common type of tumor found in the tonsil.
I have to run and take care of my kids.
best of luck, huge hugs, and you will be in my thoughts and prayers.
ekdennie
Ek, I can't tell you how much I appreciate the information you are providing. I don't want to sound maudlin, but you really are helping me!!
Using your advice I have already e-mailed my ENT requesting a referral to the nearest NCI Cancer Center--UC Davis in Sacramento for a second opinion on the pathology report, diagnosis and treatment plan.
I had already located the eMedicine article, but had not found anything that explained that explained MEC as clearly as you have.
Many, many thanks and be well!
Len0 -
Trust/faith in Drs.Kimba1505 said:Trust/Faith in docs: VERY IMPORTANT
I am sorry that you are facing a Head and Neck Cancer. You have found a good place to get support, experiences, and a lot of wisdom.
I am the partner/caregiver of the guy in the picture, diagnosed SCC left tonsil, stage IV, HPV+ in April 2010. He had left tonsil removed, part of his tongue and soft pallet, and a radical neck dissection, which took all the lymph nodes on the left side and the muscle. He has a skinnier neck, but not a big disfigurement. He then did 30 rads. and 5 rounds of chemo.
It is good that ekdennie can talk apples to apples with you regarding your specifc type of cancer. I am always reluctant to talk about Mark's SCC and his treatment to someone who has a different cancer type but the same location. There are some things that can be a fair comparison, but others that are not.
But what I think is true and critical to all who are diagnosed: get to a doctor that you trust and can put your full faith into. NCI (National Cancer Institute) hospitals are the best to be treated at. They are usually teaching hospitals, they draw the top notch doctors, and have the most up to date technology, equipment, and treatments. Mark was diagnosed by a local ENT who does kids tonsils, treats cancer, and everything in between. Mark was content to be treated by him because he had heard he was a good doctor. I said, "Nope, we're going to the city"...and we got an ENT who does (and developed) robotic surgery which was critical to the surgical removal of Mark's cancer. The radiology oncologist was amazing and these doctors listened to Mark's request to preserve quality of life...which he is currently living.
I think if you feel uncertain with what your doctors are saying, I say, trust your gut, and get another opinion. If a bigger, better hospital is further away, it is worth the trip(s). Who treates you and where you are treated can not be understated.
My Best to you,
Kim
Kim:
Thanks for the encouragement in obtaining a second opinion. Fortunately we have an NCI Cancer Center about 15 miles from home (Sacramento) and another in San Francisco which is only about 80 miles away. As you can see from my reply to ekdennie, I have already made the request for a second opinion.
This whole situation has developed since Dec 23th (the date of my visit to my GP) and my mind starts swimming at how quickly my life has changed.
I don't know how others have reacted (although I'm going to find out), but I find each little additional piece of information empowering. I figure the more I can learn, the more control I can have over a situation that at times seems totally out of my control.
I hope I continue to hear from you.
Thank you, thank you and be well.
Len0 -
2nd OpinionsJimbo55 said:2nd Opinions
Hi Len, welcome.
By all means, get a 2nd even 3rd opinion, especially if you are not confident of the present diagnosis and doctors. I believe it is paramount that you have complete confidence in your medical team as you go through treatment. The rad/chemo treatment program is tough enough to get through by itself, you certainly don't need the added burden of being unsure of your doctors. No medical professional should get upset if one of their patients gets a 2nd opinion. This is serious business and you may only have 1 chance to get it right.
People react to the rads/chemo differently. There is no telling how you will react. Some have a relatively easier time of it, for others it can be very trying and difficult. Here's hoping you are one of the luckier ones!!
A good attitude is helpful during treatment. Try to maintain good nutrition, start now- eat as much of everything you enjoy now. It will be more difficult later on. Food is medicine for your body to recover from treatment.
Endeavour to get some exercise each day. It can help in your recovery & your mental health.
Use the baking soda/salt solution to gargle often. Also use L-glutamine as a gargle and swallow. These can help reduce the mouth sores that will probably come.
Finally, visit the dentist ASAP. They will probably recommend to pull any teeth that are or may become a problem.
Good luck with you treatment. Cheers
Jimbo
Jimbo, thanks to you also for the encouragement. I guess there is a natural fear that you don't want to offend the people that are in charge of saving your life. Thanks for putting it in the proper perspective.
I have not heard of the baking soda/salt solution gargle or L-glutamine. The only things I have heard of are "magic mouthwash" and a product called Caphosol, which I think may be one in the same.
I've got the dentist covered, as that is where I originally started with the suspect "lump".
Please keep in touch and be well.
Len0 -
info empowered me as well!LTRII said:second opinion, etc.
Ek, I can't tell you how much I appreciate the information you are providing. I don't want to sound maudlin, but you really are helping me!!
Using your advice I have already e-mailed my ENT requesting a referral to the nearest NCI Cancer Center--UC Davis in Sacramento for a second opinion on the pathology report, diagnosis and treatment plan.
I had already located the eMedicine article, but had not found anything that explained that explained MEC as clearly as you have.
Many, many thanks and be well!
Len
len,
I was diagnosed in late June 2010. I have spent months looking for information on MEC. There isn't a lot of information out there, but I found that doing goole searches for "Mucoepidermoid Carcinoma", for "Salivary Gland Cancer", and then later for "IMRT" helped me learn more about what was going to happen. just be careful about what you read for MEC...a lot of it is about dogs!
you might do well to also search for "Tonsil cancer" as well as "Lymph node cancer", then you can at least know what the primary methods of treatment are likely to be.
having a good opinion of your doctor is key in this battle. you need to have a doctor who you believe will help you get rid of your cancer or at least do everything possible to get rid of it. none of us ever know where this journey will take us, but having a doctor who you trust makes the journey less stressful. having cancer is stress enough. I was lucky in finding an ENT that I trusted pretty quickly, but it took a lot of calling to a lot of my regular doctors and hearing him say that he had an idea how to treat me, but he wanted to double check if there was any more recent information on my tumor type. I heard the same thing from my radiation oncologist at our initial consult. It helped me know that neither of them felt they had all the answers, that they were willing to get another opinion, that they were willing to learn what would be needed to help me fight. and they did. just a couple of years ago my ENT would have had to remove my nose to perform the same surgery he was able to do through my nostril and mouth. He had all of these scans done beforehand so that he could practice how he would remove the tumor before I was ever on the operating table. My tumor was the size of a golfball and had grown into my sinus cavity. he was also able to save my teeth...just three years ago I would have had to lose three to four of them. and then my radiation oncologist was able to direct my radiation in such a way that I had very minimal side effects. just dry mouth, sores, dry nose, and radiation burns. yet the lotions they used and the capholsol helped prevent them from being worse.
To have a great doctor is a blessing. you don't have to have the most smooth talking doctor, but one who tells it like it is and who is willing to fight...that is a blessing!
best of luck to you with your second opinion. it never hurts to see if another doctor feels the same way as your current doctor, and then you can chose which one you want to fight with you and your wife!
I am grateful that I have been able to be a help to you. when I first joined this site there were other people fighting cancer, but none at the time had MEC, so I felt alone in learning about my tumor. I am glad that what I have learned I can pass on to someone else. I have done the same with Nkimber (nicole) and kingcole (shelly).
I can give you more info if you have any specific questions...if I don't know the answer, I'll either look it up, or let you know!
wishing you the best...sending you a hug...we all need hugs while going through this!
elizabeth0 -
More questionsekdennie said:info empowered me as well!
len,
I was diagnosed in late June 2010. I have spent months looking for information on MEC. There isn't a lot of information out there, but I found that doing goole searches for "Mucoepidermoid Carcinoma", for "Salivary Gland Cancer", and then later for "IMRT" helped me learn more about what was going to happen. just be careful about what you read for MEC...a lot of it is about dogs! you might do well to also search for "Tonsil cancer" as well as "Lymph node cancer", then you can at least know what the primary methods of treatment are likely to be.
having a good opinion of your doctor is key in this battle. you need to have a doctor who you believe will help you get rid of your cancer or at least do everything possible to get rid of it. none of us ever know where this journey will take us, but having a doctor who you trust makes the journey less stressful. having cancer is stress enough. I was lucky in finding an ENT that I trusted pretty quickly, but it took a lot of calling to a lot of my regular doctors and hearing him say that he had an idea how to treat me, but he wanted to double check if there was any more recent information on my tumor type. I heard the same thing from my radiation oncologist at our initial consult. It helped me know that neither of them felt they had all the answers, that they were willing to get another opinion, that they were willing to learn what would be needed to help me fight. and they did. just a couple of years ago my ENT would have had to remove my nose to perform the same surgery he was able to do through my nostril and mouth. He had all of these scans done beforehand so that he could practice how he would remove the tumor before I was ever on the operating table. My tumor was the size of a golfball and had grown into my sinus cavity. he was also able to save my teeth...just three years ago I would have had to lose three to four of them. and then my radiation oncologist was able to direct my radiation in such a way that I had very minimal side effects. just dry mouth, sores, dry nose, and radiation burns. yet the lotions they used and the capholsol helped prevent them from being worse.
To have a great doctor is a blessing. you don't have to have the most smooth talking doctor, but one who tells it like it is and who is willing to fight...that is a blessing!
best of luck to you with your second opinion. it never hurts to see if another doctor feels the same way as your current doctor, and then you can chose which one you want to fight with you and your wife!
I am grateful that I have been able to be a help to you. when I first joined this site there were other people fighting cancer, but none at the time had MEC, so I felt alone in learning about my tumor. I am glad that what I have learned I can pass on to someone else. I have done the same with Nkimber (nicole) and kingcole (shelly).
I can give you more info if you have any specific questions...if I don't know the answer, I'll either look it up, or let you know!
wishing you the best...sending you a hug...we all need hugs while going through this!
elizabeth
elizabeth:
My ENT e-mailed me back yesterday (yes, Sunday), with answers to some questions that I had posed.
1. I have not been tested for HPV. My ENT said he had not heard of any association with
MEC. Should I ask to be tested? From what I've learned, a positive test may mean
a better statistical prognosis, but no real change in treatment.
2. I posed the question regarding "clean margins" for the excised tumor in my
left tonsil. His response was as follows:
"The path lab measured the tonsil tumor at 1.7cm. The report showed the
tumor extended to the margin of resection. This is not surprising. Your pro-
cedure was a diagnostic one, not a therapeutic one. The intent was not to
attempt a cure, but to get a firm diagnosis. We knew there would be further
treatment later, so no attempt was made to get margins. We would potentionally
have had to attempt margins around each of the other areas biopsied--the other
tonsil, the jaw, behind your nose, etc."
While his response seems perfectly logical and appropriate, does it still make sense
in light of the fact the PET scan ONLY showed activity in the left tonsil and the
previously biopsied lymph node? From what I've read cancer in tonsils can run very deep
in various "nooks and crannies".
Boy are you right about the hugs. Here is a big one for you!
Thanks and be well!
Len0 -
HPVLTRII said:More questions
elizabeth:
My ENT e-mailed me back yesterday (yes, Sunday), with answers to some questions that I had posed.
1. I have not been tested for HPV. My ENT said he had not heard of any association with
MEC. Should I ask to be tested? From what I've learned, a positive test may mean
a better statistical prognosis, but no real change in treatment.
2. I posed the question regarding "clean margins" for the excised tumor in my
left tonsil. His response was as follows:
"The path lab measured the tonsil tumor at 1.7cm. The report showed the
tumor extended to the margin of resection. This is not surprising. Your pro-
cedure was a diagnostic one, not a therapeutic one. The intent was not to
attempt a cure, but to get a firm diagnosis. We knew there would be further
treatment later, so no attempt was made to get margins. We would potentionally
have had to attempt margins around each of the other areas biopsied--the other
tonsil, the jaw, behind your nose, etc."
While his response seems perfectly logical and appropriate, does it still make sense
in light of the fact the PET scan ONLY showed activity in the left tonsil and the
previously biopsied lymph node? From what I've read cancer in tonsils can run very deep
in various "nooks and crannies".
Boy are you right about the hugs. Here is a big one for you!
Thanks and be well!
Len
HPV- I have read of no known link to HPV, you could always ask to be tested, but from what I have read about MEC it wouldn't alter the treatment plan. MEC can occur in anybody regardless of age. there are no known risk factors for MEC. it is one of those cancers that anybody of any age can get. a lot of children get it as well as adults.
Margins- what he says makes perfect sense in that they were going in to get a clear segment of tissue to send for pathology. If they had gone in with the intent to get clean margins they would have had to remove excess tissue around each spot they removed for pathology. what he wrote indicates that they removed a good portion of your tumor, but they knew going in to the surgery that they were going to send you for at least radiation post surgery, so they removed as much as possible without impairing too much function.
It does make sense in that as a precaution they still test the other areas to insure that no precancers are present, that would change how they would treat you and how aggressive they would feel they need to be.
MEC responds very well to radiation so that will be good news for you, or at least all of my research has shown that it responds so well that surgery followed by radiation is the recommended treatment plan. they might add in chemo to try to help shrink the tumor as well as to help decrease the likelihood of metastasis. Chemo worked well for Nkimber in part (she has intermediate grade, which is slow growing)...her older tumors shrank in size, but she also developed new ones. she is now on a trial chemo drug. I didn't have chemo so I don't know much about it.
with my tumor my dr was hoping for a cure (when he thought it was still low grade), so he got clear margins and I have a giant hole in the roof of my mouth now as a result. I use a prosthetic to cover it so i can eat and drink with minimal water going up my nose! you do need to know that if your doctor says that they can not cure you, that just means that they are surgically unable to remove the entire tumor or it is graded such where they can not say you are cured. you can still be cancer free or NED (No Evidence of Disease). with MEC they will only consider you curable if you have a low grade tumor that can be completely removed through surgery, with or without adjuvant radiation. In my case they removed the entire tumor and I had 30 radiation treatments, and there is no sign of any new growth, but they will not say I am cured. they might at five years, but they might not...just depends on how things go. so have hope that if they ever say those words to you that it doesn't mean that there is a time limit here on earth due to the cancer! we all hope to be dancing with NED post treatment! My hope for you is that you too will be able to dance with NED or if you don't dance then you can give him hugs! 0 -
Updateekdennie said:HPV
HPV- I have read of no known link to HPV, you could always ask to be tested, but from what I have read about MEC it wouldn't alter the treatment plan. MEC can occur in anybody regardless of age. there are no known risk factors for MEC. it is one of those cancers that anybody of any age can get. a lot of children get it as well as adults.
Margins- what he says makes perfect sense in that they were going in to get a clear segment of tissue to send for pathology. If they had gone in with the intent to get clean margins they would have had to remove excess tissue around each spot they removed for pathology. what he wrote indicates that they removed a good portion of your tumor, but they knew going in to the surgery that they were going to send you for at least radiation post surgery, so they removed as much as possible without impairing too much function.
It does make sense in that as a precaution they still test the other areas to insure that no precancers are present, that would change how they would treat you and how aggressive they would feel they need to be.
MEC responds very well to radiation so that will be good news for you, or at least all of my research has shown that it responds so well that surgery followed by radiation is the recommended treatment plan. they might add in chemo to try to help shrink the tumor as well as to help decrease the likelihood of metastasis. Chemo worked well for Nkimber in part (she has intermediate grade, which is slow growing)...her older tumors shrank in size, but she also developed new ones. she is now on a trial chemo drug. I didn't have chemo so I don't know much about it.
with my tumor my dr was hoping for a cure (when he thought it was still low grade), so he got clear margins and I have a giant hole in the roof of my mouth now as a result. I use a prosthetic to cover it so i can eat and drink with minimal water going up my nose! you do need to know that if your doctor says that they can not cure you, that just means that they are surgically unable to remove the entire tumor or it is graded such where they can not say you are cured. you can still be cancer free or NED (No Evidence of Disease). with MEC they will only consider you curable if you have a low grade tumor that can be completely removed through surgery, with or without adjuvant radiation. In my case they removed the entire tumor and I had 30 radiation treatments, and there is no sign of any new growth, but they will not say I am cured. they might at five years, but they might not...just depends on how things go. so have hope that if they ever say those words to you that it doesn't mean that there is a time limit here on earth due to the cancer! we all hope to be dancing with NED post treatment! My hope for you is that you too will be able to dance with NED or if you don't dance then you can give him hugs!
The last few days have been a blur. The following summarizes the situation:
Final diagnosis is MEC of left tonsil MET to left lymph node. Staging is T1N2M0-Stage IVa-High Grade. (By the way, I did get a copy of the path report and am working on the definitions.) Planned treatment is 35 sessions of IMRT with 3 concurrent sessions of Cisplatin. PEG tube installation is planned for Feb 17th with planned treatment to begin Feb 21st. My ENT, MD Oncologist and Radiation Oncologist say that treatment is the same for MEC and SCC in my case. They also believe my prognosis is very good, which I really want to believe.
Surgery would be possible, but would require a radical tonsillectomy and a neck dissection.
They don't feel that either are necessary and can be a fall-back if radiation does not take out (kill) the lymph node. My oncologist says that they are doing less and less surgery for head and neck cancers. This is partially because of loss of function issues and the fact that they are being more and more successful with a combination of radiation and chemo.
My ENT has arranged for HPV testing, but does not feel it is applicable.
Since my diagnosis is a least RARE, I have requested a referral to an NCI CCC at UC Davis for a second opinion. Since MEC seems to be commonly treated with surgery, I just want to be sure that the treatment plan is correct. I guess you only have one really good chance at it.
I've heard there is some level of emotional relief when all of the decisions are finally made and actual treatment begins. I hope that is true, the current daily range of emotional highs and lows is exhausting. That, combined with the physical recovery from my tonsillectomy has me wiped out.
Big hug for listening.0 -
infoLTRII said:Update
The last few days have been a blur. The following summarizes the situation:
Final diagnosis is MEC of left tonsil MET to left lymph node. Staging is T1N2M0-Stage IVa-High Grade. (By the way, I did get a copy of the path report and am working on the definitions.) Planned treatment is 35 sessions of IMRT with 3 concurrent sessions of Cisplatin. PEG tube installation is planned for Feb 17th with planned treatment to begin Feb 21st. My ENT, MD Oncologist and Radiation Oncologist say that treatment is the same for MEC and SCC in my case. They also believe my prognosis is very good, which I really want to believe.
Surgery would be possible, but would require a radical tonsillectomy and a neck dissection.
They don't feel that either are necessary and can be a fall-back if radiation does not take out (kill) the lymph node. My oncologist says that they are doing less and less surgery for head and neck cancers. This is partially because of loss of function issues and the fact that they are being more and more successful with a combination of radiation and chemo.
My ENT has arranged for HPV testing, but does not feel it is applicable.
Since my diagnosis is a least RARE, I have requested a referral to an NCI CCC at UC Davis for a second opinion. Since MEC seems to be commonly treated with surgery, I just want to be sure that the treatment plan is correct. I guess you only have one really good chance at it.
I've heard there is some level of emotional relief when all of the decisions are finally made and actual treatment begins. I hope that is true, the current daily range of emotional highs and lows is exhausting. That, combined with the physical recovery from my tonsillectomy has me wiped out.
Big hug for listening.
len-
you have gathered what you need to fight, you will have a second opinion so you know that how you are fighting is the right way to go. now you just have to get through the "hurry up and wait". where you want everything to go fast...but you have to wait. wait until you are healed up enough, wait for the radiation plan to be finished, then wait to find out if the radiation worked...I call it the "hurry up and wait". you will be in my thoughts!
Hugs!0 -
Good news!ekdennie said:info
len-
you have gathered what you need to fight, you will have a second opinion so you know that how you are fighting is the right way to go. now you just have to get through the "hurry up and wait". where you want everything to go fast...but you have to wait. wait until you are healed up enough, wait for the radiation plan to be finished, then wait to find out if the radiation worked...I call it the "hurry up and wait". you will be in my thoughts!
Hugs!
Just got an e-mail from my ENT indicating that the tonsil tumor tested positive for HPV. I'm going to get a copy of the path report to find out more details. I don't know about MEC, but in SCC that indicates a better prognosis. A small light at the end of a dark-looking tunnel.0 -
good!LTRII said:Good news!
Just got an e-mail from my ENT indicating that the tonsil tumor tested positive for HPV. I'm going to get a copy of the path report to find out more details. I don't know about MEC, but in SCC that indicates a better prognosis. A small light at the end of a dark-looking tunnel.
I am happy to hear that you got some good news. I will let some of the others with MEC know that at least for you, you tested positive. It might help with their treatment plan too!0 -
Caphosol & magic mouthwash 2 different thingsLTRII said:2nd Opinions
Jimbo, thanks to you also for the encouragement. I guess there is a natural fear that you don't want to offend the people that are in charge of saving your life. Thanks for putting it in the proper perspective.
I have not heard of the baking soda/salt solution gargle or L-glutamine. The only things I have heard of are "magic mouthwash" and a product called Caphosol, which I think may be one in the same.
I've got the dentist covered, as that is where I originally started with the suspect "lump".
Please keep in touch and be well.
Len
Sorry I can't give much input on the type if cancer you are diagnosed with. But first if you not comfortable with your oncologist at any time get another opinion. From my reading As for caphosol vs magic mouthwash they are different things. Magic mouthwash is a mix of lidocaine benedryl maalox created by cancer pharmacy experts to numb mouth throat pain. Caphosol is 2 vials you mix and like magic mouthwash swish and spit but caphosol provides relief from dry mouth mucositis. I was prescribed both and found both helpful in treatment and recovery. I had last radiation treatment 12/3/2010 and still using both. I also swear I would not survive without the 5 x daily salt water baking soda rinse to combat the mucous in my throat which is still an issue 2 months post treatment.
FYI I was diagnosed scc stage 3 right tonsil met to right lymph nodes. Right tonsil hpv positive
Though if you ask my medical oncologist he says staff 4. Post ct scan Jan 26 revealed right neck lymph nodes not shrunk enough at 13 mm and necrotic so I'm having selective neck dissection February 23rd with EUA and possible tonsillectomy to remove remains of right tonsil. Left tonsil was removed august 3 2010. I had 3 rounds chemo - cisplatin doxetaxel 5 Fu followed by 35 rads in a 6 week time period with concurrent chemo drug cetuximab.
Don't want to hijack your thread but wishing you the best in getting best diagnosis and treatment plan.
While it's no fun to hear hpv positive it seems research shows they know how to attack hpv positive cancer.
- Cibil0 -
Good NewsLTRII said:Good news!
Just got an e-mail from my ENT indicating that the tonsil tumor tested positive for HPV. I'm going to get a copy of the path report to find out more details. I don't know about MEC, but in SCC that indicates a better prognosis. A small light at the end of a dark-looking tunnel.
The HPV positive result is huge, Thank God. I found my cancer the same way as you did, lump under the jaw, originator tumor was tonsil. I went through the 35 radiation treatments and 3 rounds cisplatin. You will have good days and bad days but I promise you that the good days will outnumber the bad. Prayer works and Faith will see you through this. Drink a lot of water, eat right and get rest. On a positive side when my taste came back fully molst things tasted fantastic.0 -
Good newsRayarno said:Good News
The HPV positive result is huge, Thank God. I found my cancer the same way as you did, lump under the jaw, originator tumor was tonsil. I went through the 35 radiation treatments and 3 rounds cisplatin. You will have good days and bad days but I promise you that the good days will outnumber the bad. Prayer works and Faith will see you through this. Drink a lot of water, eat right and get rest. On a positive side when my taste came back fully molst things tasted fantastic.
Thanks for the encouragement. Was yours SCC or MEC? Was yours HPV+?
As you know, we are all subject to the Plan the good Lord has for us. I can accept whatever that results in, but there is nothing that says that I can't fight.
Out of curiousity, did you use a feeding tube--either PEG or nasal? I've gotten some
comments saying that there are some real risks with a PEG.
I like hearing that there might be more good days than bad. Based upon your experience, when did the REALLY bad days start and then end?
Did you have any problems with the Cisplatin?
Really appreciate your comments and anything other information you can provide
Len0
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