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fishn2 #145223 01-29-2012 02:35 PM
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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.


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.
zengalib #145225 01-29-2012 02:54 PM
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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.


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.
Joined: Aug 2011
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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.


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 #145247 01-30-2012 05:05 AM
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Wow! I understand you. I had 57 nodes removed, much more than you.
No idea why...


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.
Joined: Dec 2010
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I would be happy with more rather than less. Maybe because of fear that it could be aggressive. Good luck.


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
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