Hi all. I�ve been watching this forum since october, but no courage to join. Now I�m here as I see that you are so confident and happy. I feel a slap on my face.

I was in the best periods of my life, no big problems at all, perfect boyfriend, job, family... and then something on my tongue appeared. Went to ER, they tought it was fungus. But it was not. Went to a dentist that sayd "ouch, this does not look good". He recommend a Head and Neck Doctor. Went and he scheduled a biopsy for the next day. Did it and was diagnosed at light displasia.

He said it looked like carcinoma. I didn�t like him because he as not avaiable to answer my 29387432 questions at that time, treating me like a number. I run for more 2 docs. Both of them recommended "the doctor" in another city. Went there... BTW, this doctor is the main expert in Brazil, as people say (I�d like to talk more about him, his threating the ex-president of Brazil that�s being threated of larynx cancer right now).

I entered the sugery without knowing if is was displasya, carcinoma in situ or carcinoma.

And it was carcinoma. 0.7 X 0,5 X 0,63 centimeters (depth). I woke up after surgery with a crazy shaped tongue (no talking for 15 days since they did primary closure and i had stiches) and a Nose tube (NIGHTMARE FOR ME!) that i was supposed to spent 15 days but spent only one week after complaining and promising the doctor that I would not eat anything, just drink.

The depth of tummor was found 7 days after surgery and they decided I�d do that again. Another elective neck dissection is recommended for tummors with more than 0.3.

The tongue surgery was made December 07, 2011. The second (parcial neck dissection) was made December 21, 2011. My nodes were all clean. The doctor asked for HPV exam also.

So, my situation: T1N0M0, Well diferentiated, No perineural invasion, no salivary glands involvement, all nodes clean. My speech is strange but I�m eating anything without problems.

The doctor says that recurrence chance is small. Less than 15%, 10%. He does not recomend radiation because he said "it�s the best prognosis we could have".

So, after all this words I still freak out about cancer issue. I know there is worse cases, but my worries is that I din�t see much T1N0M0 talking about their diseases. I wanna hear this people telling me, "Hi, I was like u, and I�m 30 years without recurrence, don�t worry". But these people does not show up in forums.

Hey Brian Hill, hope u keep this forum active until 2042 then I can come back here and help this guys!

So, to end this post, I�d like to know people that had been into something like this with primmary closure.

Welcome Brazilian Girl!

It's exciting to see someone on these forums who found it so early! That's awesome! Glad you found us and I know there are others one here to relate to you.

Brian will be in his 90's (I believe) in 2042, so I think we should start encouraging him to up his Centrum Silver vites, Ensure and a whole lot of bran to make it there! I think the old codger can do it!



Eric

Well, Brian is a long term survival anyway, he can beat 90! I just dont recommend Centrum, heard it�s cancerous! Now everything for me is cancerous, almost freaking out!

I was a "anti-smoking" activist informally asking for all my friends to stop this. Now I�m a crazy *itch that takes a taxi and If smells cigarrete I say "Hey man, I had tongue cancer without smoking, are you sure that U are going to keep this sh*t?". Yes, I was crazy before having cancer. Crazy and non-smoker, non-drinker, non-drugs.

Just Coke.

Hi Brazilian Girl,

Welcome to OCF.

Looks like I had the same SCC as you. It will be 3 years in April for me. Not sure I can say not to worry because I think about it daily. My tongue isn't the same and never will be. I think I have a small speech impediment people tell me it's in my head. Everything taste good to me, but it took a while to get back to spicy foods. I also have scar tissue inside my tongue.

Your very lucky you caught it early. Hope all goes well for you and you heal quickly.

Take care,
Connie

Hi, you also was into primary closure? How old are u?

I don't know how long I will go. I seem to be a cancer magnet, as I have had three different ones. I can blame my grandparents for these genes that don't do such a good job of protecting me.

The beauty of these forums is that with good people newly coming to them all the time, who care about helping others, they will be around and open long after I am gone. That is unless we can actually eliminate the disease, and then we will close the doors for good.

Perhaps that is hoping for too much, I will be satisfied with the incidence rate becoming very small, and survivorship from early discovery being very high.

By the way I will be 39 AGAIN this year. Ingrid tells me that since I really can't pull off that look anymore, I should start telling people I'm 79, and lying in the other direction. Then they will thin I look amazingly good for my advanced age.

Hi Brazilian girl. Sounds like you've been through a lot but thankfully they caught it and diagnosed early. I too am a tongue cancer patient, mine was bigger so I was a T2 - and started out with 0 nodes but ended up with one involved shortly after my biopsy - I'm in my forties and except for this I've been healthy - non smoker - non drinker. Because of the size of my tumor the removed 1/3 of my tongue and replaced it. Usually a T1 is a pretty safe catch. Just keep an eye on your mouth, and nodes in your neck. Sometimes despite the superficial size - it can be agressive. - I know at least one person here who's cancer was very small - 1mm depth - but it was aggressive. You should be good but just be diligent! And of course welcome! I did chemo and radiation after my surgery just to be on the safe side - my tongue has healed for the most part and my speech is okay za8 only hav a lisp when I'm tired. Take care!!! Oh and it's highly unlikeyl your HPV + usually it's found at the base of the tongue (in your throat) or on your tonsil... oral tongue cancer is usually not HPV related!

Hi, there!

Welcome to OCF. I had cancer very similar to yours. I am at the end of my first year after diagnosis and treatment (surgery only). I've been told that I have a good prognosis, as well. Although, I am still in fear every day of a recurrence. Hopefully, it will get better with time and each passing year of health.

Take care and best wishes to you in your continued health!

Kerri

Hi Kerri! how come you are still having masses in the neck with neck dissection? how many nodes off? thanks and best wishes!

Hello BG, and welcome. I can't speak specifically to your issue as my mets were only to lymph nodes under my jaw. But I'm so glad you came through it with everything clean!

Personally I think Brian will live forever. Just my opinion of course.

Hi BG82,

I too just joined here so Welcome to us both! I'm not sure what mine was rated. My RT Oncologist said something like T2 &???

And my cancer is really rare from what they tell me. But it sounds like you came out okay and lucky for you that they aren't having you do the radiation.

My tumors were low grade but still spread from my base of tongue to two lymph nodes. I'll have to ask what it's rated next visit.

And aren't you the one and same Brazilian girl from CSN? If so, it's good to see you over here.

Heal Well,

Tommy

Hi David, I had 57 lymphonodes removed. All clean, fortunately. Felt blessed for that... Cryied a lot. Happyness of couse

Hi Brian, how come you had three different cancers? Can u tell me about this? Oral cancer + 2 more cancers? Oh man, now I admire u so much.

I�m asking because I asked my doctor (I�d like to tell more about him, also a great story, he is the top Head and Neck in Brasil, write several books and had cancer... guess where? HEAD AND NECK! OMG!)if i had more chances to had other cancers as breat, linfoma, cervical, bones (YES IM FREAKING OUT) and he said "your risk are the same from anyone".

I�d prefer to think my risk is smaller than anyone since I already had this *hit.

Well, just curious Brian. If u can tell me i�d apreciate.

Yes. that�s me! I was at CSN too... but didn�t found any like me there. People is nice, but I think the "early cases" are not in that forum.

So, poorly differentiated seems u can beat with chemo and radiation. Hope you do well with those treatments... wish you luck and peace.

How old are you?

You shouldn't admire me. I didn't do anything but tolerate what the doctors did to me each time. I had little part in my survival of any of this.

I had non Hodgkin's lymphoma, tonsillar oral squamous cell carcinoma, and an esophageal adenocarcinoma. There is one more waiting in the wings, for a nice round four when it is all said and done. But any of this is just the luck of the draw, having good access to healthcare, doctors that knew what they were doing, others that caught things early, and so many other variables. Those are the things that kept me alive. In all this - and to oh so great a degree - I have been little more than than froth on the wake of life. (That probably won't translate well�) There wan't anything that I personally did that made me a survivor. And I don't ponder the whys of it all. That is a waste of time. I didn't engage in any risk factors that I knew of at the time such as tobacco use, or other excesses, except perhaps in my own view of my importance. (While an undesirable and unattractive quality I eventually corrected, not one that will give you cancer)


So you eventually come to terms with waves that come and go, and you just ride them out the best you can. The only constant in life is that there is no constant. Health and well being are like that.

I tought you also were a tongue patient. But I see you are in much more stuff than that.

Have you never asked the doctor�s why? My main issue right now is to guess if my body will become a "cancer vacation island" or if it�s a big shake that will be completely forgotten in 5 years.

The doctor also told me that after 5 years my risks are the same of anyone.

BG82,

I am a lot older than you. 57, which puts me at the age most patients get my kind of cancer.

Good to see you here and I hope you find this forum to your liking.

Tom

For most oral cancer patients the odds of recurrence decline sharply at two years and at five years. Missed micro metastasis rear their heads in the first two years, as do particularly aggressive forms of the disease. By 5 years, most of those kinds of things are out of the way, so survival numbers go up. But no one can know the meaning of most of the genetic predisposition's that make you who you are, to be protected from - or susceptible to, getting a second cancer.

I want to reiterated what Brian said in his earlier post: "I didn't do anything but tolerate what the doctors did to me each time. "
When you are staring at the survival odds, remember that they include people that didn't follow the doctor's suggestions - waited to long to start treatment, didn't get the neck disection, didn't stop smoking or drinking. At the end of the day, if you can say - I've given it my best shot, the rest is up to God or fate (depending on your belief), and I have experience some joy or beauty (you may have to work on this a bit) - it will have been a good and productive day.

My husband an I had a reminder of the other things that can get you on a trip to one of his trip for radiation therapy in a snow storm ... about a year ago. A big old SUV lost traction, and wound up coming towards us in our lane. My clever husband was able to avoid it - but it was a pretty scary minute. I don't know the secret of handling the fear of cancer like I do that SUV, but when I find myself, as a caregiver, worrying too much, I say - or it could be an SUV.

Best wishes to you, Brazilgirl. I hate it when young people have to deal with with this kind of trouble.

Hi, There, Brazil Girl,
Glad you found us, sorry you have to be here! I agree so much with what Maria has said. I am 2 1/2 years out and I am always thinking about what if it comes back. I always wonder about the odds, too. My husband and I also had an experience this summer similar to Maria's. We were coming home from an art show. It was hot, we had the car windows up, and the air conditioner was on. We got hit by a fire truck! We didn't see or hear it until we saw a flash of red and we were hit and ended up by the side of the road. We are so lucky to be alive. I got away with a bruised ribcage, my husband has a torn rotator cuff, and my car was totalled. But we are still here! So, I think my odds are pretty good right now. Good luck, and keep checking back with us.

Hi Fish, yes, getting cancer at 29 years old were not on my plans. I never made anything for that. Sometimes I thank god that it was in the tongue, because If it was on my breat or uterus maybe I�d ignore it or just did not notice. Sometimes I get mad, because I use my tongue for the things I love most. Speeches for my team, talking and eating good food such as french cheese and swiss chocolates. But getting mad does not work, and I hope I heep my tongue till the day I die. Hopefully in 50 years and counting.

Those stories are crazy. I neved faced death... well, I had a terrible episode in 2007. My cat died from cancer, my only "relative" that had cancer... fibrossarcoma due to vacin reaction. I loved him so much and was sad.

Well, in december 2011 I was diagnosed with cancer. One day before my dad�s diagnosis. That�s tragic for anyone who lived 29 years so long with no main problems.

Hi, Braziliangirl82,

You asked me why I still had enlarged nodes after a neck dissection. That's a good question, for which I don't have an answer.

I had a selective neck dissection down to the top of level 4 (29 nodes removed, all clear). My radiation oncologist and medical oncologist did not recommend rads/chemo since the tumor was small with good margins and my nodes were clear.

Four months after my surgery, I found a pea-sized mass in my neck (around level 5), lower down than my original neck dissection. Most times, the cancer does not skip levels and show mets in the lower levels without involvement in the upper levels, but it can/has happened. So, when I found the first node, I freaked out. My surgical oncologist didn't think it was anything much to worry about, but I was to have my first postpartum CT scan anyway, so he just moved it up a month. I had the scan on a Thursday and basically didn't worry about it all weekend, Monday, or Tuesday...then Wednesday, he called and said that there was something "new" and that he had consulted with the head of neuroradiology and another doctor that was a Harvard Professor (not sure what kind of doctor. Basically, one of them was not too worried about it and recommended closed observation with a repeat scan in 3-4 weeks. The other doctor recommended discussing FNA (fine needle aspiration) or an excisional biopsy. I was to follow up with him in a week. I called him a few days later and said "I want it out!". He agreed, no problem and scheduled me for an excisional biopsy the following week. I am happy to say that he removed 3 nodes in addition to the one that I found and all were benign. They were attached to the spinal accessory nerve, so the procedure was delicate. He explained to me that many of us have 5 mm nodes at some point (even healthy individuals), but that my skin is so fair/thin that it's very easy to palpate structures beneath it. He further explained that since the nodes were attached to the SAN, we have to be cautious/selective about which nodes we "chase" in the future and we may need to watch/wait on some of them if they are on the small side.

So, another 4 months after that, I got a bad cough/cold and ended up with asthmatic bronchitis. It was during this illness that I found another node, same size and place as the last one. I was given antibiotics and prednisone for 5 days (by an urgent care doctor) for the bronchitis and the node reduced in size, but was still palpable. Since I had an upcoming check up with the doc, I just called his office to give him a "heads up". When I saw him, he felt the node and again wasn't worried about it especially because it was in the same place and the same nature as the previous ones that he biopsied. My next appointment is in early March and that is close to my one-year anniversary date. I think I will be having a scan around that time. Of course, I'm nervous given my history and the fact that the node is still palpable. Not that I want/wanted chemo/rads "just in case" after my last surgery, after learning so much from the people on these boards, I am afraid of needing it in the future. I am full of fear/anxiety, but my doctor always make me feel at ease. He is one of the very best in this country and is undoubtedly the best in Boston/New England. I trust his judgement. He hasn't steered me wrong so far. It's just my nature to be anxious then with the cancer post-traumatic stress superimposed on that...I'm getting help in all areas, but time and perspective are the things that I think are going to make me feel better.

Wow! I understand you. I had 57 nodes removed, much more than you.
No idea why...

I would be happy with more rather than less. Maybe because of fear that it could be aggressive. Good luck.