I was recently diagnosed with cancer on my tongue. I have had an oral surgeon watching this for almost 10 years. I have had many biopsies over this time and this time I was not so lucky. I have never smoked, chewed or drank so it is kind of a mystery why I have this. I have now been to a second dr, a ear nose and throat surgeon who came highly recommended for this problem. Of course I am pretty shook up about surgery to remove part of my tongue, but I feel the cancerous tissue must be removed so I can do my best to get rid of this. I guess I am just looking for people who have been or are now going through this kind of surgery. They are going to remove the lymph nodes in that side of my neck also. The CT didn't show any other problems, so hopefully they can control it from spreading. Radiation is about a 50% chance they say, depending on how the lymph nodes come out. Hope you all can share your experiences. Thanks

Dear Bigtwin-being pretty shook up is pretty normal! But there are lots of folks here who have been through the surgery you are going to have, and they will try to answer any questions you have. There is also a ton of information on this site. If you will find the search button under the Banner at the top of this page, you can search a word, term, phrase [tongue surgery] etc. Please tell us more about what is going on with you. Where are you having the surgery done? Amy

Dear Bigtwin,

I have sent you a private email with my cell phone number. Please check and give me a call as I can answer many of your questions as I have been through exactly what you face.

Jerry

Bigtwin, Your post was exactly one year to the day, that my husband Erik was diagnosed with tongue cancer. I know exactly the feeling your having right now, that shook up feeling, Christmas coming and trying to get things in order before hand. Erik had about 40% of his tongue removed and all the lymph glands in his neck. He did have to have Chemo and 35 radiation treatments, (he had one positive node). The only real advice I can give is, STOP, Take some deep breaths and begin taking one thing at a time. Im sure you have been exploring this sight, it has THE BEST RESOURCES available (outside the docs) Not to mention the support. If you have a wife have her get on here and keep checking things out, there are tips of the trade for getting through everything.
Its going to be a ride, but its one that I cant say was all bad.
Know we are all here for you!
Jennie

BT,

We need more info to be as helpful as possible. There are many decisions you will be asked to make and it will be very helpful to arm yourself with as much info as possible. Who do you see next and what is the purpose of that meeting? Answer that and we will give you a ton of info and questions to ask.

There is much more to be said but lets concentrate on the next Dr visit.

I thank you all for your posts. It helps to hear that other people have gone through all this and know how I feel. I am scheduled for surgery the day after Christmas,,, Ho Ho Ho. I believe they called it squamous cell carcinoma. As I said, they will remove as much of the tongue as necessary and remove the lymph nodes and send them off. I will feel much better when they say they are clear. If not, then the dr says I will have to have radiation. He wants me to concentrate on the surgery and not worry about radiation for now. We'll cross that bridge if it comes. I have heard that most people have to have their teeth pulled before radiation? Was that the case for most of you? Sure hate to think of that. But if necessary I'll just have to do it. I am trying to think postive and I have faced many surgeries in the past, spleen removal, gallbladder removal, carpel tunnel on both hands and knee reconstruction and total knee replacement due to an accident when I was a teenager.... Gee, sounds like I could write a book. Really I lead a very active life on our farm and I believe I will get through this too, just dread it. But then who looks forward to any surgery? I would like any advice from you folks who went through this surgery so I will know what to expect after surgery. Can you talk and swallow right if they remove quite a bit of the tongue etc... Thanks again.

Hi, I had the surgery about a year ago, and got clean margins. Just last month at my regular checkup, we found a new "spot" and I have now had the pleasure of tongue surgery twice. I won't go into details here, but I have discussed my surgery and recovery time in the "blog" section of the forum, under the "Dear Diary" blog. I have had a total of 1/3 of my tongue removed (left side), I opted to have my teeth pulled, the dentures went in as soon as the last suture was put into place. Actually, getting used to eating and finding the right denture adhesive has been the most frustrating part of the whole experience! I had a great surgeon (same one both times) and had some pudding and apple juice after I came out of recovery the second time (that was pretty gutsy of them...it's a wonder they didn't wear some of the pudding home with them that day!)
Understand, the second surgery was done outpatient. The first surgery, a year ago, was a modified neck dissection, hemiglossectomey (tongue surgery), I was intubated for two days, feeding tube placed, the whole shebang. To my great surprise, I was eating within a day or two, and talking coherently (?) the day after I was extubated. I didn't have chemo/radiation to follow up, and in light of the second surgery, I am probably not the one to ask for advice in that respect.Some folks do well without adjunctive therapy after surgery, I am just not one of those lucky few. Will go in on the 23rd for a PET scan, and then on the 27th to talk about radiation after that.
Hang in there, keep us posted
Andrea

BT,

I did not have surgery but did have Rad and Chemo. My docs said surgery was not necessary since the rad and chemo would kill the cancer and if I needed surgery after it still would be available. So far so good. I am not saying surgery is not right for you but there may be options for you that you are not aware of. I went to 5 cancer docs before I decided and believe me their recommendations were different.

Although I had surgery it was to remove my lower jaw and rebuild it, not to remove a portion of my tongue. I also had radiation.

My medical team recommended a " belt and suspenders" approach. One (surgery) was good, both (surgery and radation) more insurance. I agree...I don't want to leave anything to chance and I have no intention of spending the next who knows how long, worrying about whether or not they got every little bit of the demon. I KNOW that I and they have done everything they could possibly have done to give me the comfort of knowing the cancer is gone.

What's in the future is just as much a mystery now as it's ever been...I'm good with that. Cancer or a recurance doesn't play any bigger a role in my future than it did before.

Maybe my beliefs are foolhardy...I don't know, but they're mine and I'm sticking with them. I just have way too much life to live, and I refuse to do it under the cloud of "maybe I should have agreed to..." this treatment or that.

It's over and there's a lot to do with the rest of my days.
All of the best!
Wayne

We can second what David told you.
It is really important to get a second opinion.
We were led to believe that the numbers for survival were about the same without the surgery.
As you can see in this instance...things are going really well for us.
Whatever you decide...we wish you the best.
Take care
Marica

I appreciate knowing what everyone else has done, but of course we are all different. I have decided to go ahead with the surgery and if radiation is necessary, I'll cross that bridge then. I think I could go to 5 different dr's and get 5 different opinions on which way they would go. Sometimes you have to follow your gut instinct. I don't know that you ever feel totally right in decisions like this, but I don't feel I can sit and wait too long.

Actually, you really shouldn't get five different opinions about which way to go--there are protocols for treating this cancer. They are linked somewhere here, I'll try to find where.

Like you, I had tongue cancer and had surgery and neck dissection. I had about 1/3 of my tongue removed. My nodes were all negative, but the tumor itself had some risk factors for recurrence so the opinion I got from docs at a leading CCC was that I needed radiation and should probably have chemo as well (although that was aggressive treatment for stage II cancer, I don't regret having it).

The surgery wasn't nearly as bad as I feared. I was back to speaking normally and eating pretty normally within a month. After you have your surgery, if you are not being treated at a CCC, you may want to get a second opinion from one about whether you need radiation as a follow-up.

Nelie

Guidelines for treatment:

http://www.oralcancerfoundation.org/treatment/guidelines.htm

Bigtwin
You will be OK, its a rollercoaster of emotions,
There are many of us that have been there. Second opions are sought after, to see if all are on the same page, have faith in your Doctors.
I will be thinking of you.

One of the BIGGEST myths I read about on this board is that we have to have our teeth removed to have radiation. That is simply NOT true and so many people are left without teeth because of this. There are TONS of survivors on here that didn't have any teeth affected. Please, please be sure to have all the information before having teeth removed. Once taken out, they can never be replaced.
Take care,
Minnie

I second what Minnie is saying. Do NOT have any healthy teeth pulled without a second opinion. They USED to do this as a routine precaution, but it is no longer done. I, like an idiot, let them pull 16 healthy teeth and have been sorry ever since. Took over two years and $15000 1997 dollars to get partial dentures and is not covered by insurance, medical or dental.

Take care,
Eileen

I recently went through Chemorad Tx and all my dentist did pre TX was redo some fillings, take X rays to make sure everything was OK and make molds for the daily flouride Tx which I started pre Tx and still do. I missed a few days during Tx. I have seen the dentist once post Tx and I see him tomorrow. He told me last time to make sure I keep plenty of water in my mouth until my saliva (?) returns.

Bigtwin,

I have to agree strongly with Minnie and Eileen -- don't agree to have teeth pulled unless your doctors can explain a compelling reason why (such as the teeth have problems already and would have to come out anyway). I just came from a regular followup visit with my periodontist and he said everything still looks good -- 17 years after radiation and with all my original teeth still intact. It does require a lot of attention to oral care (regular brushing, flossing, fluoride applications, keeping your mouth moist), but it beats having a lot of unnecessary extractions.

Cathy

If your teeth are in good shape, you can probably get by with having good dental work done prior to treatment and getting the dentist to prescribe prescription strength floruide toothpaste and rinse,; however good detnal care is essential for now on due to reduced saliva if you have rads. DH kept his teeth, as have several people I have known. One guy had problems with 'scatter burns' on his tongue caused by the rads bouncing off old amlagum fillings. They made him a mouthpiece that was supposed to prevent this, but it didn't work. This aparticular friend, who also had no risk factors for cancer, was told by his doc that his CA was caused by HPV. They can usually tell by the lesions if it is HPV.

Also, another friend of mine had a large portion of her tongue removed had portions of a muscle from her upper arm used to reconstruct her tongue. Even though there are certain protocols to treatments, there are also varying ways to treat a lot of these cancers. My own huband had a treatment called RADPLAT that is only available in ten centers in the US. The goal of RADPLAT is organ preservation while defeating the cancer. Here is an article about it:

http://theoncologist.alphamedpress.org/cgi/content/full/11/5/469

One of the doctors who created this treatment is in Springfiled, Illinois. If you can get over there prior to your treatment and want a second opinion about having RADPLAT instead of the standard treatment send me a private email at [email protected] and I can give you the contact info.

I saw my dentist this am and his practice has many patients in our boat. He says that there is no medical reason to pull healthy teeth prior to rad. All of us must brush and floss frequently; use the flouride daily and swirl water constantly throughout the day until our saliva production returns (if ever). Those that typically experience root decay problems are those that don't practice good home teeth care and are prone to decay issues naturally.

I see there is two days before your surgery.I want you to know you have a group of supporters here, some who will pray for you, some who will send positive thoughts and some who will just be thinking about you all day on Wednesday. You have probably been filled in on what your doc is planning, my only words to you right now are, make sure you have an advocate in your room with you for the first few days. There is no reason for pain, or lack of nursing care. Your job is to recover, and the better care and pain management you have, the better recovery you will have. I sat by my husband for most of the days and nights and by the time we left the hospital, I knew what he wanted to say and spoke for him, just through the look in his eye.
God Speed, and talk to you soon!!
Jennie

BT, My thoughts are with you on tuesday, I'm hoping all goes well for you. I normally do not like to give opinions on medical advice but Minniea and Eileen are experienced when it comes to teeth removal. I would say that without a doubt my biggest problem of being a long term survivor has been my teeth. They are well worth fighting for. I beg you to think hard about letting anyone yank out healthy teeth.
Once again Good Luck Tuesday.

I have appreciated all your opinions on the teeth pulling questions. Of course I don't even know for sure that I will have to do radiation so hopefully I am worrying for nothing. After hearing what you all have been through about your teeth, rest assured, I am not going to let them pull all my teeth without a bunch of opinions. I have a lot better feelings about it than I did. I do have a lot of fillings, but I now feel that most of them would be worth fighting for if and when that happens. Thanks for the boost. I am scheduled for surgery Tuesday around noon and the nurse said it would take at least 3 hours. That kind of surprised me as I was figuring 1 or maybe 1 1/2 hours... My knee replacements didn't take 3 hours, but considering it will be hard to get back in there and work, and all the other things involved in testing the tissue and all I guess that is normal. Depends on what all they have to take out and how many lymph nodes are removed. I took a little cold a few days ago and have been worried all weekend that they might not be able to do the surgery. I called the nurse and she said since I was on antibiotics just last week totry to make sure a sinus problem was all over with, I should be ok for surgery unless I have a temp of 101 and I have had no more than 99.1. Just a cough today and feel pretty good, so hope I get to get this over with.. It will really upset me to have to reschedule and sit and wait. I can see that it had "pooched" back out after they removed tissue for biopsy Dec. 5th., and it is a little more sore, so I am really wanting to get this over with... Thanks to everyone for your good thoughts. Hopefully I will be able to report good news on here after the surgery is all over.... Bye for now.

Good luck on Tuesday. I'll be thinking of you.

You know how to get in touch with me if you need to.

Jerry

Merry Christmas,
I am glad to hear that you are going to have this taken care of. I have cancer in my tonsils and on the back of my tongue, I haven't required surgery, but am going throughChemo and radiation. I had to have all of my teeth pulled, and that was not pleasant!! and now my mouth is to sore to wear the "new and improved ones" but you know what, It sure doesn't bother me as much as I thought it would. Funny how priorities can shift!!I don't think there is an easy way to cope with the big "C" at any time in our life, but the prognosis today is so much better than it was even 10 years ago. How much surgery will you require? I am sure once it is done you will be none the worse for the wear, remember we are survivors, we have a treatable desease, we are no longer doomed. We are the Lance Armstrongs of tomorrow, Our families and friends are testiment to that.

I hope you have a great Christmas. I only regret not being able to taste anything, there is way too much good food around and I have to force myslef to eat anything. I have a somach tube so that when the throat gets to sore I won't starve. I am a very imapatient patient It has been a good lesson for me to learn to slow down and just appreciate what is going on around me. I have found it is alright to give in and take a nap in the afternoon, and go to bed early at night, it is ok not to want company, it is ok to feel sad and to cry for no apparent reason, it is ok to be human.
I hope you keep usp posted after your surgery. I will keep you in my thoughts. Remember,, you have the power to beat this ,

Hi everyone,
I survived my tongue surgery and neck dissection on the 26th. It has been pretty rough. I was in the hospital for 6 days. They feel they got all the cancer with clean margins and took all the lymphnodes. I finally got a report on the lymph nodes the 6th when they took out the staples. I'll have to say the neck surgery has been worse than I expected, but I am healing well and I think it will be fine with some time. I still have the feeding tube down my nose and my husband has been very helpful feeding me and putting all my meds through the tube. I have always been a very bad gagger, so this has been a real ordeal, but I am coping.. You do what you have to...The plan is to take the feeding tube out this Thursday... I cant wait... What a joy that will be. We really dont appreciate the little things in life like being able to swallow your own spit.... Ha.. I have had to have a suction machine to get it all out. I had a cold when this all started and I have had an unbelievable amount of junk I get strangeled on.. Hate it when I am so helpless... I have been very sick to my stomach and that is very hard when all this is going on, but that is getting better. The Jevity stuff that goes in the feeding tube is very rich and didn't agree with me for several days, but that too is going much much better. I am so glad I had sense enough to keep an eye on this thing and let the oral surgeon do all those nasty biospies. They were a piece of cake compared to now. A group of drs called a tumor board will discuss my case, but my dr feel I shouldn't need radiation, we'll see. Hope not... I have come to really like and trust this dr, he has been very good to work with and a nice person too and that always helps when you are so sick. Shouldn't babble on, just wanted to thank all of you who sent good wishes. Hope I can give some sensible advice to others in the future... Most important is to keep your chin up.. I have had those tearful times and I am sure I will again, sometimes you need to release stress, but you can't let it consume you, have to kick yourself in the behind and get in gear.... My husband will be looking for his "farmhand" back before long and I will gladly help...Talk to you soon. Thanks again for all your good thoughts. It hasn't gone unappreciated...

I am very happy to hear that your surgery went well and you have clean margins. Don't hesitate to get a 2nd opinion re not needing further Tx such as rad and enhancement chemo. There are not to many on this site that did not have surgery followed by chemo rad. This is a very agressive cancer. Just my 2 cents.

Your description is almost 100% what I faced. SCC,StageII front right on tongue . Went to a radiologist before surgery and he recommended that I go with the surgery. With the surgery performed on 11/21/06( about 20% of Tongue removed) had a radical disection of neck. Margins OK and nodes are OK as per surgeon. His thought was to hold Rad to later if the C returns. Likewise the chemo. So far so good. Only real issue is speech

Hi Bigtwin,

Gald to hear that you are through with the surgery. You'll soon be looking back on this and time does make the memory fade (a little anyway).

In our private messages, we discussed that there are a handful of us here that have never had radiation or chemo. This is cetainly a big decision and you will get many opinions.

If radiation does come up, please reread our discussion about having teeth removed.

Hope you feel better real soon.

Jerry

Bigtwin...I, also, have a stage II SCC....different area...but clear margins and negative nodes at dissection. My surgeon said the same thing as yours: no radiation now. Save it for later if you need it for a recurrence. It seems that there would be two ways to think of this. 1. have radiation to PREVENT a recurrence, or 2. trust that you have gotten all of the cancer and save the radiation as a fall-back measure. I guess it depends on which scenario carries the greatest chance of being correct. My surgeon feels that he has gotten all of the cancer, and that there is no need to undergo the difficulties of radiation now.

From everything I've read here over the past (almost) 3 years, the "radiation or not" decision for Stage II cases can be a very tough call to make. It can depend on a variety of specific factors in the pathology reports that might provide a sense of how aggressive the tumor is likely to be, and takes a really experienced head and neck cancer team to make the most informed recommendation. That's why there are so many of us that continue to beat the drum about getting an opinion from a comprehensive cancer center about the best course of treatment.

I'm one of the Stage II's who had radiation (largely as a preventive measure) after a partial glossectomy and modified neck dissection, which had clean margins. Thankfully I've had 17 years, and counting, without a return of this disease. My decision to have radiation was influenced very strongly by a tumor board at Dana Farber who felt it was definitely warranted based on my pathology reports.

Bigtwin and Sailor, it sounds as though you might be listening heavily to the advice of an individual surgeon about whether to proceed with radiation. If you read through some of the many posts on this forum over the past few years, you can see that there have been a number of Stage II close calls where someone's doctor convinced them to "save" radiation for a possible future recurrence, and when the recurrence came, it was more aggressive and much tougher to treat than the first time around (and hindsight would argue it might well have been eradicated with radiation the first time around). Please be sure you are getting the best possible review of your own reports by experts who see oral cancer day in and day out, and then pay attention to their advice.

Cathy

I strongly agree with Cathy. The point that jumped out at me about her Post was 17 yrs. with no regrets.