Hello. I just joined this board tonight - although I wish I had found it a month or so ago. I am 29, female and a non-smoker and have been diagnosed with tongue cancer.

I went to the dentist in November and he saw the sores on my tongue (which I took for granted that I was chewing on my tongue at night due to wisdom teeth coming in and moving my other teeth and thought that it would heal once I had them extracted.). The dentist didn't think it would be anything major - but wanted it checked out just to be sure.

Anyway, he sent me to the oral surgeon who thought the sores were not cancer - but definitely thought to biopsy them - and we did all four wisdom teeth extractions at the same time. He also sent me to the ENT for a second opinion before surgery and also my primary care doctor saw them too - no one thought it was cancer.

But - the biospies came back as SCC of the tongue. I had a partial glossectomy and a bilateral neck dissection on January 25th. They removed 20% of my tongue and 22 lymph nodes. None of the lymph nodes had tumor cells in them - but some were as big as 2.5 cm and all but 5 showed hyperplasia in the node. There is also some dysplasia which extended across the border of the incision on the tongue which still remains. The tumor was a stage I/II borderline- which they couldn't tell for sure b/c of multiple centers of loci in the tumor. They did get clean margins though. There was also no vascular or neural spread according to the pathology report.

I am wondering however, due to the size of the lymph nodes and the hyperplasia if there were some tumor cells in there -too few in number for the pathologist to see them on slide.

Also - my neck is still swollen slightly from the neck dissection. It is almost 4 weeks out from surgery - how long does this typically take to go down fully?

THey are doing a PET scan in 4-6 months and I am scared to death that it will be there too. THere are not recommending radiation or chemo at this time. I am worried that by not doing one of those treatments that it will come back. Any thoughts on this?

I am very emotional right now - one day scared that we didn't do everything possible - and the next thankful that I didn't have to do radiation. I don't really know what to think. I have a follow up with the oral surgeon this week to make sure the wisdom teeth are properly healed and I think he wants to see how the surgery went as well.

I got lucky in that eating has almost returned to normal and I could eat pretty quickly after the surgery. I also only have a slight lisp right now - and am pretty understandable. Of course - I really notice the change in speech but most people have no difficulty in understanding what I am saying.

Since I do not know what caused my cancer - I am so scared that it will come back and that I'll have to go through this all over again.

hi amy, welcome you have come to the right board.although my cancer was of breast and larynx cancer as no boundarys. you seem to be handling things very well, its a long road you will be traveling but everyone here will be supporting you please keep in touch and remain possative hugs and prayers your way ...god bless...maz

Hi Amy, so sorry to hear that you have to deal with this. But I am glad you found OCF. I will send you a private message about my tongue cancer experience. Take Care...Love, Carol

Amy,

I'm sorry you had to experience this at such an early age, but I'm glad you found this site. You don't mention whether you've been seen at a comprehensive cancer center -- if you haven't, I would urge you to go to one as soon as possible for a second opinion.

There are several parts of your story that sound very familiar to me: delayed detection because of misdiagnosis by several doctors, size and location of tumor, type of surgery, findings in pathology report, etc. Even though my surgical team felt they had good margins, the head and neck cancer team at my hospital pushed strongly for radiation, partly because of the potentially aggressive nature of this disease. While that extra treatment was really tough at the time, I've never had reason to regret having had it.

Please feel free to come back as often as you need to with any questions. There are plenty of people here who can identify with what you're going through and will try to help.

Cathy

Amy,
Your young age and good health habits actually work against you a little. I am not trying to frighten you but you must be as aggressive as possible in fighting this cancer.

Typically primary care doctors, dentists and some oral surgeons, as well, couldn't Dx a tumor if it jumped out and slapped them. Diseases of the throat require a specialist and even some of those will gloss it over due to young age and lack of negative health habits.

What diagnostic workups did you have? PET? MRI? CT?

Certainly your dentist and oral surgeon are to be commended for at least being conservative and ordering a biopsy in spite of their personal doubts.

Are you going to a comprehensive cancer center? If not, at the very least, I would have my records forwarded to one for evaluation of your treatment plan. Do you have a cohesive team? I.e. MO, RO and ENT or Head & Neck surgeon that are on the same page (and share information)? Has then been a tumor board to come to a consenual agreement on your treatment protocol?

As Cathy mentioned, tongue cancers, in particular, are very agressive. If it were me I would hit it with all they've got.

Brian may be able to jump in and cover the node issues in greater detail.

I have been treated by two head and neck surgeons. I have not seen any oncologist at this point. I also - am going to one of the best local hospitals - but it isn't a cancer center.

This is exactly what my pathology report says for the synoptic report: "Tumor size; uncertain. The tumore measured 1.8 x 1.4 0.6 cm grossly. However, microscopically the tumor extends anteriorly beyond the grossly described vertical incision site. This was not appreciated grossly. It is possible that the tumor is slightly greater than 2cm in greatest dimension which would make this a T2 tumor."

It also says that it is a moderately differentiated G2, pN0, pMX, the margins are uninvolved by carcinoma, distance of tumor from closest margin is 3 mm, venous/lymphatic invasion not identified, and additional patholoic findings: epithelial hyperplasia and epithelial dysplasia. Comment: "Epithelial dysplasia is noted adjacent to the main tumor site. In some areas there is a multifocality of tumor origin."

In the details of the report it states that some of the nodes are up to 2.5 cm in size and that 17 of the 22 show either reactive follicular hyperplasia, no tumor seen or reactive hyperplasia, no tumor seen. They took nodes from the submental area (5 normal - no hyperplasia), from the right submandibular triangles and levels 2-3 from the neck).

I don't really know what to think. My parents have been very supportive - but they think my fears of recurrence are unjustified. My mom thinks that just b/c it was removed that I have no chance it will come back. She gets mad at me when I look things up on the internet and then get upset about it. My dad just takes the surgeons words as gold.

I really have no complaints about my surgeons - they have been great. I have two head and neck surgeons that worked together for this surgery. It took 4 hours - I guess that is normal. I think they want to spare me from the trauma of radiation - although they have been clear that since we don't know the cause - that it could come back. In one way - I feel as if I should do radiation to "nip it in the bud" on the other hand, I feel as if I shouldn't do it - in case that I need it later (can't you only have it once).

I only weigh 115 now as I have lost 10 pounds since Christmas due to both of the surgeries (first the wisdom teeth and diagnosis of cancer and then the actual tumor resection and neck dissection). I really don't want to go through radiation if it would leave me at like 90 pounds or so - I'd be a stick.

The workup so far, was the initial biopsy by the oral surgeon, some labs: cbc, liver panel, pt, ptt, kidney, mg, and phos, chest x-rays and a CT which didn't show much of anything. Didn't show any involved lymph nodes nor did it show the actual tumor on my tongue. So I doubt the effectiveness of that - b/c if it didn't show the tumor they knew was there - what other things could it have missed.

During the surgery they did a triple scope as well to make sure it hadn't spread to larynx, esophagus or bronchs.

I am supposed to have a PET scan in 4-6 months.

I guess I am most worried that it really was in the lymph nodes even though the path report says no. They are attributing the size and hyperplasia to my wisdom teeth extraction which occured 2 weeks before the resection. In the back of my mind - I keep thinking there was micrometastasis that just wasn't seen on the slide.

I'm also wondering - since we don't know for sure what caused it - if I could spread it. For instance, I know cancer can't be "spread of caught" but if it was caused by HPV, then can I spread that by kissing someone - and making them a possible victim at a later time? All of my pap smears which I get every single year - have always been normal. I've never had an abnormal one - so if it were in my mouth - would't it be there as well? I know it is silent a lot of times - but if my tissues were affected in my mouth - shouldn't they be affected on the cervix too? I don't know for sure this was the cause - just assuming it might be.

Sorry for such a long post. I have so many questions. Everyday - I have new questions.

Welcome Amy; sounds like your caregivers are crossing the T's and dotting the I's. It is tragic that you are forced to deal with this at such a young age.
Darrell

Amy,

Like you, I had a couple of superb surgeons who did a wonderful job with my tongue and neck, and I was hoping that the clear margins and lack of lymph node involvement would be enough to end the treatment right there. However, the oncology team who looked at the pathology report and weighed the various risk factors decided that I really needed the extra step of radiation to nail this disease and hopefully keep it from coming back.

I'm concerned that if you have only dealt with surgical specialists, you don't yet have enough information to know whether radiation is advisable in your case. That type of decision is best left to an experienced oncology team that deals with head and neck cancers on a regular basis.

Please feel free to send me a private e-mail if you wish.

Cathy

Well I'm with Cathy here. Surgical only people doing surgical only solutions with dysplasia still in the margins. I am less than comfortable with this. My GUESS is that if you were being seen at a MAJOR CANCER CENTER that routinely saw oral cancer patients, and had the opportunity to have a full TEAM of doctors following your case, you would be getting radiation about now. Surgeons will routinely say they consider keeping it in reserve a good thing, but the fact is that if this is not completely eradicated now, the recurrence is much more difficult to deal with... even using radiation as part of that SECOND round of treatment. I would be getting a second opinion from a radiation oncologist, and not be leaving my fate in people outside the world of oncology and from a singular discipline, surgery. I wouldn't be doing this down the road, I'd do it now. I don't mean to rain on your parade of getting out of radiation, or to sow too many seeds of doubt in your mind. But many of us here have seen this scenario before, and not always with the best of results.

I go to the oral surgeon tommorrow - so I guess I'll ask him for a referral to a radiation oncologist to see what they say. The head and neck surgeons are the ones who are treating me right now - but the oral surgeon is the one who originally did the biopsy and teeth extraction. I live in Cincinnati - does anyone know the closest cancer center that deals with oral cancer? We have the Barrett Cancer Center and the cancer center at Christ Hospital. But, I don't know if either of these has dealth much with oral cancer.

Hi Amy from Amy. You gotta be special with that name I can't add anything to the above other than to echo the feeling that you need to get a 2nd opinion at a Cancer Center that sees alot of Head and Neck patients. Ask the two you mentioned above what percent of their patients are H&N Cancer- if it is low-go somewhere else. Keep telling us how you are. Amy

I went back to the oral surgeon today for a check of the teeth and the resection. He agreed with the H & N surgeons that no additional treatment is needed now - b/c I was stage one, good margins, no neck involvement, no vascular/lymphatic invasion, no perineural invastion and it was moderately differentiated - not poorly differentiated. I am comfortable with this decision for now. If something changes I might seek additional treatments.

I really just want to get on with my life. I feel as though 2 months were taken from me as I lost interest in almost everything except the cancer. I'm not married and support myself by working at a Children's Hospital - so I would like to get back to dating & to work so that I have enough money to pay bills. If I had radiation treatments / chemo - I'd be off work for another 8-12 weeks and I've already used all of my short term disability and all of my vacation time. A few co-workers contributed some hours of their vacation just to cover my first surgery where I was otherwise going to be unpaid.

Amy, Your decision to seek no more treatment is certainly understandable. We all have to work to put food on the table. It was very generous of your co-workers to contribute some vacation time for you. Sounds like a good group. And your confidence in your surgeons is wonderful. Good docs can be hard to find.

There are a couple of things I'd like you to keep in mind as your carry on with your recovery. First, please don't imagine that "chemo and radiation" is a fixed, inflexible thing. In fact everyone of us here probably had very different amounts and types of those treatments. It is always tailored uniquely to the individual.

And second, you can only get GOOD oncology advice from an oncologist - not from a surgeon. Even though we hold them in such high esteem, every doctor can't know ALL that there is to know. My father used to tell me that "The plumber will have an opinion about that broken light fixture, but if you want if fixed right - call an electrician." In much the way you would not ask your dentist to treat your sprained knee, don't ask your surgeons to 'know with certainty' that all you need is surgery.

Get one more opinion from folks who fight this particular disease every day. You don't have to act on their advice, only listen to it. Don't hide from this one, it is VERY unforgiving. No matter what decision you make, we are with you. Be strong. Tom

Amy,

My mom's original tongue cancer was a stage I clean margins no lymph node involvement so her ENT said "no radiation we will save it for a recurrance" not only did she have a recurrance (we still hate to call it a recurrance because we think it was just some cancer left behind that the surgeon missed) but she had to endure a second surgery loosing an even larger portion of her tongue and hard palate then she was just barely healed from that and then she had radiation and chemo. It has been 2 years since she completed radiation and she is doing fine now but if she had it to over again she would have opted for the radiation after the first sugery rather than having to deal the whole ordeal for more than 1 year 1st surgery April 03 then recurrance in Nov 03 radiation & chemo started in Jan 04 and ended at the end of March 04.
I would definately get to a CCC as soon as possible for a second opinion. I understand you wanting to get back to your normal life but you will continue second guessing yourself. Like everybody keeps saying this diesese if very unforgiving.
Take care and feel free to send me a private message if you have any questions.

Dani

Maybe the question I should ask - is: "What is the percentage of people with stage I, no nodal involvement have recurrent disease?" Does anyone have statistics on that? I'm much more of a stats person.

Amy,

You can drive yourself crazy with statistics -- and often you can find a set of statistics to support what you're hoping to conclude, but you're still dealing in the abstract with something that may have little or no bearing on YOUR LIFE. Statistical data can't give you any assurance about your own prospects for healing.

DaniO makes some good points about the chance you take when you "save radiation for later" and rely on surgical advice alone. I can assure you that there were plenty of us here who desperately wanted to get on with life right after surgery, but you aren't doing yourself any favors if you don't get the input of a qualified oncology team that will look specifically at your pathology reports, not at statistics.

Cathy

Dear Amy M.
First of all let me say how sorry I am to see that you have to face such issues at your young age. My heart goes out to you. I am a new member (mother-in-law of 33 year old non smoker Laura.) I can relate to your empathy for statistics. I studied biology and love statistics and yet I have to agree with Cathy G... Statistics don't always relate to your life. If cancers have a 97% cure rate and you are in the 3% then statistics matter not. I lived in a pediatric oncology ward and knew those 3%. Yet my son had a 2 % rate for two year survival. He was among the first few kids to live 8 years (recovered 33 years and going great!!) So although statistics are basically designed to give you assurance, I don't think they are as reliable as we all would like them to be as everyone is different. Laura will go for a second opinion after her surgery Tuesday. Remember you don't know what they will recommend until you go and you don't have to do what they say. It just never hurts to be armed with as many facts as possible. Laura will probably stay with her Doctors as she trusts them, but it would be nice to have the same recommended protocol from some other trusted authority also. What ever you do, I think this site is a veritable wealth of information and support and my sincere hopes and good thoughts go with you!!
Kathy

Amy,
What the statistics don't make really clear is that most people who contract H&N cancer are in their mid 50's and persons getting it at an earlier age tend to have much more aggressive types. We have had others here in their late 20's, initially dx'd with stage I and they died. They too were non smokers and moderate to non drinkers. Some of them chose treatment plans that were on the "lite" side wishing to avoid radiation and the effects. I hope am not scaring you but this disease is relentless, ruthless and unforgiving. Tongue cancer recurrence can be extremely dangerous as well. I would carefully re-read and consider Brian's post if it were me.

Stage II is on the border of recommended radiation according to the NCCN oncology practice guidelines. http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

I am thinking more and more that I will call the CCC at Ohio State on Monday morning and see if they will see me. The hard part will be convicing my parents that treatment is needed if that is what they say. I am going to ask a good friend to go with me to the consult, as my parents do not know right now that I am considering it. I think that would worry them too much right now. I am sure they will support me whatever I have to do - but they are my main support right now - as I live alone normally. My 2 cats certainly cannot drive me to and from treatments if needed.

I know you are not trying to scare me - I was scared before coming to this site. I think this site has helped me realize things that I didn't know previously.

I wish I knew there was a higher purpose for my life. I certainly can't see it right now. Why is it that all the mean nasty people are healthy and the nice ones are the people this happens to? I just don't understand.

There is peer reviewed publish data that shows that about 28% of stage one and two oral cancer patients have occult mets to the cervical nodes. If you are a statistics person as you state, I do not think this information helps patients in general or you. It still boils down to a best guess on you and your doctor

What exactly does "occult mets" mean? Is that where the path report came back clean but that there were really cells there that the pathologist missed or that weren't in that particular slice used to make the slide?

Occult just means that something is not readily visible via the technologies that we currently have to see that it is there.

I always thought "occult mets" referred to when no pathology showed on a CT scan, or other type of scan but when a neck dissection was done and the nodes actually examined, cancer cells were found. Since Amy has had a bilateral neck dissection, my conclusions was there's no longer a 25% chance she has occult mets. Am I wrong in understanding how that's normally used?

Hi Amy!
I know what you are going through as I was on the same boat about 2 years back....diagnosed at the age of 23,unmarried & about to begin my career.I too thought it wasn't fair as I was a non-smoker,non-drinker,healthy eater & etc but I learnt that this disease can strike anyone at anytime & you gotta be as unforgiving to it as it is to you.
From day 1 I told my doctors that I didn't want any statistics as I felt each & every case is individual & generalized figures cannot determine which side you'll fall into.
Ofcourse it's your decision whether to go through radiation or not,but I'd like to mention that the radiation experience is not the same for everyone,I was petrified of starting it,but it wasn't too bad at all....the side effects didn't hit me until after 4 wks & overall it wasn't nice but definitely not the experience I'd actually dreaded...I think I got more sick by worrying about the radiation than the radiation itself.
Take care.
Luv Jill

Amy,

It's not uncommon when you're trying to come to grips with your diagnosis to get to the "why me" stage. I remember thinking at the time about so many people I knew who seemed to have a much less healthy lifestyle than I did, and yet they somehow managed to avoid major health issues like cancer.

You may not see much of a "purpose" now when you are forced to stay focused on getting the right treatment and living one day at a time. However, as I look back on the period of time immediately following my treatment, there were things that seemed devastating at the time that turned out to be moving me in a different -- and much better -- direction. I never could have anticipated the positive developments, both in work life and personal life, in the years since then, many of which are somehow related to what I went through with cancer. On balance, I have to say that some of the best years of my life have been in the post-cancer period.

It's good that you will have a friend with you when you go for a consult -- it can be very useful to have another person helping to listen and ask questions at a time like this. Please keep us posted on how you're doing.

Cathy

Occult mets could be a met to ANY area, that are not visible. There are many tissues and structures in the neck that are left after a dissection ( of which there are many different types taking out varying degrees of tissues) and there can be a metastasis to some tissues that are not nodes that were removed at the time of the dissection. However the study mentioned related to the 28%, specifically looked at node involvement, so quoting that was not necssarily appropriate.

Thanks for helping me understand better what occult mets means, Brian. It seems like in developing my understanding about this disease, I often create an understanding based on the context of a specific discussion with a doctor or piece of research I read, think I understand the concept, and then later realize it's not totally correct or it's incomplete.

Nelie

Amy, In relation to the "why me" stage, I've been through that too--and every now and then I still go there. At one point when I was right in the midst of it, shortly after being diagnosed, I walked by this old guy outside a bar with a cigarette hanging from his mouth (bars are now nonsmoking in NY and it was freezing out but he obviously needed to come out and smoke) and I had this strong urge to walk up to him and say "HEY, I got YOUR cancer! There's been a mistake!"

Then the second after the urge passed I was laughing at myself for thinking that way. I mean, who ever said life was fair, y'know? But whenever I'm driving and I pass by some old guy with a cigarette hanging from his lips I now think to myself "HEY! I think I got YOUR cancer". It helps remind me of the absurdity of trying to figure out what the meaning is behind all this and it still makes me laugh at myself (which is a good skill to have in the cancer battle)......

Nelie

Amy,
don't let your parents poison your intuition. Obviously you wouldn't be here if you didn't have valid concerns, questions and fears.

Most parents would probably naturally be in denial or protective but this will not serve you well in the long haul. They really need to "but out" - you are an adult and this is none of their business. Tongue cancer is serious stuff and recurrence a very real possibility. It amazes me that they would try to impede and/or criticize you for being your own advocate. In my 3+ years I have been on this board this is a first that I have heard of this type of situation.

My parents are not trying to impede in any sort of way - we were all prepared for radiation before the surgery took place. Dad put new tires on the car just for the purpose of driving me everyday ( I would have been staying at their house and the hospital where it would have occurred was an hour and 10 minutes from their house). They were completely supportive. Then, the surgeons said clean margins and no node involvement according to the pathology report and no radiation would be needed in thier opinion. My parents have a good family friend who had tonsil cnacer with radiation about 10 years ago and he lost 70 pounds and had bad after effects and that is what they know of radiation. They are just believing what the doctors have said and don't want me to have to endure that if it isn't necessary. They aren't trying to impeded -but this cancer is so new to us - and no one in my family (extended or otherwise) have had cancer other than some sufface skin cancer lesions wihch were caused by being a farmer for 50+ years of sun exposure. This is just so new to them and myself - and such a rare cancer - that they just don't know all the risks of recurrence or how serious it might be. They know what the surgeons have said and I have not been seen by an oncologist. Once I have - if it is needed - they will not object. I have not told them - b/c I don't want to worry them unnecessarily right now. The docs may say I don't need anything - we won't know until I see them. I'll be making a call in the morning. I don't know how quickly they'll get me in though.

Amy,

I am really sorry you are having to deal with this horrible disease. It is admirable you are trying to protect your parents and in some sense shield them as you gather more information. Should your decision lead you to the conclusion of going through with chemo/radiation, there will be ample opportunity to draw them back in. They would no doubt do the same if the tables were reversed. Find the medical team with the most experience preferrably at a NCCN member institution. Attack with everything you can, you may only get one chance.

Best wishes,

Ed

Amy, They will try to get you in as quickly as possible. They understand time is important here. I understand not wanting to worry your parents at this point. if the opinion you get from an oncology team that deals solely with head and neck cancers is that you need radiation, it sounds like your parents will end up supporting you as you go through treatment.

Come back and let us know what happens when you get a chance!

Nelie

Amy,
I was reacting to your own statement here in your earlier post: "I don't really know what to think. My parents have been very supportive - but they think my fears of recurrence are unjustified. My mom thinks that just b/c it was removed that I have no chance it will come back. She gets mad at me when I look things up on the internet and then get upset about it. My dad just takes the surgeons words as gold."

It sounds to me like you have great and loving parents and they (and us for that matter) want to share their optimism but the reality is that H&N cancer is a stealthy and deadly disease.

At a comprehensive cancer center you would have a team of doctors and probably a tumor board where they all convene and discuss the best protocol for your treatment. I am a little surprised that you didn't already have a consult and evaluation with a radiation oncologist and medical oncologist in your pre-treatment workup and planning.

We have a lot of great local hospitals around here too and if I got into an auto accident that's the first place I would go but as far as cancer goes - I wouldn't accept anything less than a comprehensive cancer center (CCC) or cancer center (CC). I traveled 60 miles a day for my rad treatments at a CCC. Many others have traveled even further. I attribute my very survival to going to a CCC.

By the way I had tonsil cancer, lost over 60 lbs and have made a full recovery with 3 years cancer free. 10 years ago they were practically in the dark ages in regards to treatment options. They didn't have advanced 3D conformal, IMRT, PBT, PET scans, anti-emetics (that work) or all of the chemo cocktails that they have today.

Please don't take any of this as a criticism. We take educating patients to be their own advocates very seriously. This is a lethal and unforgiving disease and mistakes in diagnosis or treatment can have very serious and/or deadly consequences.

Amy,
This is a mean disease. It rarely takes prisoners. Please get to a comprehensive cancer center. From all the stories I have read and research I have done on oral cancer (and that's A LOT) this cancer will not give up easily. GIVE IT ALL YOU'VE GOT and then some. This includes the top treatment and doctors in this field. BEFORE starting radiation or chemo GET TO a major cancer center. Once you have started treatment somewhere you can't get in to see them until it's completed. (at least that was our experience). CALL TODAY! Do not let distance, family or anyone else disway you. You're fighting for survival.
As for bad things happening to good people, you are not alone. So many are on this board. Good people who this disease has struck. They have faced it and made the very best of it, as good people do and as you will. I understand your frustrations. I know it doesn't make logical sense and what Brian said is correct, but the gut human instinct is "why me?" I keep thinking that with my brother. A guy about his age in our community had a horrible accident about 1/2 way through my brother's battle. He seriously injured and out in freezing temps for hours before he was found. He was extremely intoxicate which may have actually keep him alive. He had to learn to walk and talk again. He is now well and back to doing the same things - drinking, fighting, and a poor father. It angers me that he does not respect the second chance he was given. Why him? Why not my brother? He would have treasured the opportunity to continue living, to see his little girl grow up. It's often crossed my mind that it's harder for the "bad" people to die. Maybe it's their will or lack of fear or consequences. I keep wandering how God could take my brother from his little girl. He had such a good heart and forgiving nature. Some days I've had to repeat to myself, over and over, "It rains on the just and the unjust alike." It's only natural to wonder "why" but force it to the back of your mind and focus on total recovery.

Please keep us updated on your progress.
Lots of love and strength,
Tonya

Amy not sure what you ultimately decided but thought I wold add a few things. I had a very similar diagnosis as you 4.5 years ago with local SCC on side of tongue, clean surgical margins and clean nodes. I did not get radiation at the time. Just recently, 3/31/06 I had a recurrence on same side of tongue and had surgery to remove a .5cm tumor which went well. Margins were thin and I am scheduled to start radiation shortly given my narrow margins and recurrence. My one piece of advice to you is if you opt against radiation, make sure you get followed up frequently and don't let them start to spread you out as tme passes. For whatever reason you and I got this in the first place,i was 27 and non-smoker, light drinker, we are obviously at higher risk it can come back so you want to make sure if it does it gets caught early.

Warren,

Thanks for posting. I ultimately decided against radiation (actually it wasn't really a choice - not one doctor was willing to do it anyway) - but I agreed with them. I had my PET /CT at the beginning of April and that was negative - so a relief for now. I am on a 6 week schedule with my ENT / surgeon right now. I actaully have another appointment on Wednesday. Yes - if I have a recurrence - it will be treated in much the same way as you - they have all said if a recurrence happens - radiation will be given. They just didn't feel it good to do it right now given all the conditions of my case.

Amy

I agree with them 100%. After my initial episode radiation wasn't even discussed. Good luck with everything and I just want to reiterate that even if you have multiple clean follow-ups don't let them start spacing out your appointments which is protocol. Insist on sticking to a 6-8 week schedule as it can't hurt and can only help. As you know, this is very treatable if caught early.

One question - how did they find the carcinoma in situ? Was it through a scan - or are there visible changes in / on your tongue that they can feel/see? Just wondering what to expect. Do they do biospies down the road to check? I am only 3 months out from surgery and still have lots of questions for each doctor's visit.

Amy
In my case the carcinoma in situ was visible, the first time an ulcerated area that would not heal, and the second time as red inflamed area that never went away. My advice would be to get to know the inside of your own mouth so that between checks you can be aware of any visible changes..
Sunshine.. love and hugs
Helen

Amy:
Your story sounds similar to mine except I was diagnosed at age 38 Non-smoker, non-drinker. My diagnoses was Stage I well differentiated, and had partial left glossectomy with 19 nodes removed. I was first seen by a oncology radiologist who suggested surgery instead of radiation. He told me if I had radiation and had recurrence of cancer in the future, radiation will not be a choice at that time. I felt better to go with surgery especially a radiologist recommended it. It has been almost 14 years since surgery and I never had second thoughts of getting radiation treatment. As far as the recovery from the tongue surgery, it has been a long slow process. Although my speach has recovered, but nerve of the tip of the tongue did not grow back completely.
I also felt why do bad things happen to good people and good things happen to bad people. I read a book by Bernie Seagal, MD and he described that bad people express their anger outward and good people keep the feelings to themselves. This really hit me hard since I tend to keep my feelings and anger to myself and try not to cause trouble. I read his books and listened to his audiotapes, and it really helped me during recovery. I also read a book (Getting Well Again) by Dr. Carl Simonton and Stephanie Matthews-Simonton that describes using guided imagery to develop positive attitude. It did not take the place of the medical treatment or surgeries, but it did more for me emotionally during the process.