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#145114 01-27-2012 05:18 PM
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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.


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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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!

laugh

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #145117 01-27-2012 05:40 PM
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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.


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
EricS #145118 01-27-2012 05:49 PM
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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





SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



ConnieFL #145119 01-27-2012 05:59 PM
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Hi, you also was into primary closure? How old are u?


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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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 - smile 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... smile oral tongue cancer is usually not HPV related!

Last edited by Cheryld; 01-27-2012 08:19 PM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #145135 01-27-2012 10:52 PM
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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


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Kerri #145143 01-28-2012 04:48 AM
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Hi Kerri! how come you are still having masses in the neck with neck dissection? how many nodes off? thanks and best wishes!


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
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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.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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