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Joined: Sep 2005
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Aimmee,

I was stage 2 clear margins no lymph node invlovement lost 3 back teeth and hoped for the best. Unlike you my ENT gave me no statistics, the only thing he said is the closer you get to 1 year with no recurrance the less chance you will have to have radiation. I have spent many years living from MD appt to MD appt. after my surgery last year I was determined to do all the things I have been wanting to do for a while but couldn't plan due to always haveing a surgery. It is something I think about all the time but don't let it rule your life (or try not to)The first few months after surgery are the freest I ever felt. Don't pay attention to what numbers say, everyone is different and every case is different.

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Aimee,
I also had T2N0M0 and had surgery only with clear margins, no radiation. That was January 2005. March of this year I noticed a very small sore at the same site, a very early recurrence and again had partial glossectomy with large clear margins, again no radiation. I do worry but am followed closely and am comfortable with my decision to not have radiation. Minnie's Tim McGraw song is also a favorite of mine and the cancer made me realize I need to do some of the things I've always wanted to do and quit putting them off so I took the big leap of faith and went skydiving last September. (tandem jump-I'm not brave enough to go solo-yet) I might have put this off forever if not for the cancer. Best wishes to you. My doc never gave me quotes for recurrence rates. -Susan

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When I was first diagnosed inlate sept of 2205,I was scared out of my wits, stage 3 tonsil that had spread to one lymph node. My ex-wife who is a 16 year survior said it best, "more people live from cancer than die, and they have better treatment today than they had yesterday. I have kept those "statistics" close to my heart and have convinced my self that I WAS and AM going to be one of those who survive. Now I am not so nieve to think that is all it takes, there is alot of "luck of the draw" involved as well your care both by your doctors and your self. As you can see I am not out of the woods , time wise, by a long shot and have went through radiation, chemo, modified neck dissection and even 39 HBO treatments. My doctors thing I am doing great, I feel great today and hope that I do tomorrow. Best of luck to all and to hoping that you get dealt one of the lucky hands and win this battle, those are the best statistics you can get the rest are worthless in my book.
lenny

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Stage II, margins NOT clear, no lymph nodes, treated with radiation and chemotherapy at Dana Farber. Would you believe my oncologist said 99% cure rate? I think I will believe him!


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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The important thing is to make the most of the present and not worry obsessively. The latter will affect your physical (as well as mental) well-being.

When my husband went to a head/neck cancer patient education forum at Hopkins last April, he was upset by some there who had made it through treatment and were (more or less) OK but were still lamenting their "bad luck" and saying they could no longer enjoy their lives as they were so consumed with worry about the cancer coming back. Barry got up and made a little speech about how he was grateful for the good care he had received, that he was not looking back any more but was planning to enjoy his life -- that he could not waste any more of his time worrying about this disease -- but was more concerned with where our next trip would be to!

No one knows what the future may bring, but you might as well embrace it!

Hey, we got chased by forest elephants in Uganda and had to spend a long cold night out in the Impenetrable Forest in the pouring rain because our guide got lost -- let me tell you, that sort of thing puts things in perspective very quickly. Life is an adventure and who knows what is in store!

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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I love this page and the people here but sometimes i get scared all over again. I had surgery 4 months ago. See the stats below, no radiation, no chemo and i did not ask about stats. I was told I was cured and the recurrance was extremely slim. I went to my follow ups as much as I was scheduled and only missed a month since my insurance lapsed.

I was elated and so very excited about being "cancer free". Maybe too excited. Maybe I should be doing more. I was so happy about my outcome but now I read all that I'm reading and think maybe I am being gullable and naive. oral cancer is no joke and very serious.


Donna; Age 50, dx w/ Stage 2, muco epidermoid carcinoma 4/07, maxiolectomy of the upper right palate 6/07, clear margins, no radiation or chemotherapy, close follow-ups.
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Hi Thomas here. I had radiation in Dec. 05 / Jan. 06. For me it was the right thing to do. In Feb. 05 I had day surgery to have a small tumor removed (T1N0M0) from the right side of my tongue. No radiation then.
Over the summer of 05 it grew back. I had an other bi-opsy in Sep. 05 witch came back positive. I had the big surgery in Oct. 05 (see my write up in "Introduce Yourself" happytobealive) I ask my doctor
if I would have gone for radiation after my small surgery in Feb. 05. Would that have prevented the big one in Oct. 05 (T2N0M0). My doctor said YES for sure. Without the radiation I had between 0 and 40% change
for this thing to come back, and with the radiation between 0 and 5% change.You do the math. This is a no brainer! Some people get off easy, and I was one off them. Yes I had the burns. Yes I lost
50% of my saliva, and yes I lost part of my taste (witch has come back). So it is not the end. I wish everyone lots of luck, and health. Thomas in Calgary AB.

--------------------


T2N0M0 Residual Squamous Cell Carcinoma, Hemi glossectomy. 25% of right side tongue removed. Forearm flap, Tracheotomy, Neck dissection, Mandibular osteotomy. Oct. 3-2005 +
30 rounds of radiation and no chemo. No smoking and drinking.
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Reoccurrence ... is a important stat to look at .. and yes .. it does look like reoccurrence does occur ..

I think more importantly is to look at how and why reoccurrence happens.. in some cases the reoccurrence does not even happen in the same spot. In my mom's case the cancer went from the tongue, then developed in the neck and also her lungs. In this case, the tongue is not related to the neck or the lungs.

The answers I find and the causes for reoccurrence .. is not enough in my opinion


the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
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Good luck and well wishes to all on the board, and thank you to Brian, who does such a great job in monitoring and professionally keeping the board going. I now have only a few months cancer free from a second tongue cancer this summer. The first was 7yrs. ago. I was told then by my Dr. who still works with me, that we do not know what will happen as far as recurrence. But that I must never smoke or drink alcohol. Since 2000, I have not had so much as a puff or a sip of alcohol. I still had a small recurrence. I am lucky it was caught early and a surgery was done without chemo or radiation. The main thing with oral cancer is VIGILANCE! Checkups are a must, along with constant self care.

So much in life is out of our control. I try to live in the now, and enjoy what I can each day. Cancer has affected just about every area of my life, but I am lucky to have a life today...Be Well to All!
Gerry


gerry f.
Joined: Apr 2006
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aimeeb Offline OP
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Our sincere thanks to the Oral Cancer Foundation and all of you for your information and support. You have been a great blessing to our family. Aimee has left a donation in her will, and donations will be requested in her obituary.
With deep gratitude, Aimee's family


Stage 2 SCC of tongue, surgery only 2/13/06. Margins & nodes were clear. No rad or chemo deemed necessary. Recurrence found 4/07. Surgery 5/22/07 with Cisplatin x 3 and 33 IMRT. Died 12/28/07.
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