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#166477 06-12-2013 03:38 PM
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I have been diagnosed with this 2 times now. The first surgery was two years ago. biopsy showed Moderate Dysplasia Epithical Hyperkertosis. In May of this year I went in for the second time, biopsy showed Mild at this follow up he gave me a gel to put on my tounge 2 x day to help the healing. I went in for another follow up and he tells me at this time that my test showed cancer cells beyond the perimiters of the biopsy WHAT?? and I still have a small white spot. I don't understand why they didn't take all if it out. Now I go back in June 27th for Laser. I don't know what to think. I have stopped smoking I hope this works.

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Karen, welcome to OCF! Sorry to hear of your problems with the dysplasia and it returning. It doesnt always turn into cancer but it sounds like yours has made that change.

Im very glad to hear you have given up tobacco. Im sure the health problems have helped you to quit smoking. Nothing like having a serious health condition to make you get rid of the cigs. I didnt quit until I was diagnosed with oral cancer. Now I can proudly say I am 6+ years tobacco free. Hope you will remain free from using tobacco, its not easy but you can do it.

SInce you have a cancer diagnosis you may consider seeking out one of the countrys top comprehensive cancer centers (CCC). They have a whole team who get together to discuss your individual case and they all give their input for a treatment plan. Please let me know if you need the list.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Sorry to hear of the cancer diagnosis, but welcome Karen. It could have been an incisional biopsy, whereby they take some of the suspected tissue and enough normal tissue, so they can see if it has wide enough margins or an excisional where not enough tissue was taken. Anyway, not much you can do about that now, but as Christine mentioned, see a CCC.

Laser is good since it does not effect future radiation or surgery, and small T1 is often treated by radiation or by surgery. Due to smoking, there is something called "field of radiation" where cancer cells are in nearby structures where the cancer was from, due to the carcinogen exposure, like smoking, but not seen with HPV, so it's not surprising that some come back in acdifferent area, in addition, there could metachrounous or synchronous cancer in the aerodigestive tract, lungs. I would think they would do a full work up, and a pandendoscopy to see if cancer is anywhere in the aerodigestive tract, and one of the scans, CT, PET/CT. You may want to find out the cancer stage, TNM grading, histology from the pathology. Try to get copies of everthing for your personal file, like bloodwork, cd's of any scans, biopsy pathology, and if needed for a 2nd opionion, most will want this.

By quitting smoking, you already increased your chances of success, and reduction of recurrences or secondary cancer. The longer you remain smoke free the more added benefit you'll have.

Good luck with everything,


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hi there and welcome. - I would get myself to a top ENT - preferably at a top cancer center. It may seem small but tongue cancer is nothing to mess with. Even the smallest amount can be highly aggressive and require extensive surgery. Usually tongue cancer is not HPV related and is treated with surgery first.

I don't want to scare you and sometimes ignorance is bliss, but someone who is educated about their health and condition can better advocate for themselves. If you nod and say yes to the drs and don't ask questions it can be a very bad thing.

Several things should take place at this point. You should have a ct/pet/or MRI - to find out if its in the lymphnodes - or has spread. You also should find out it's size and differentiation - this will tell you the staging etc - your dr should also tell you this.

If its being lasered then chances are its small, but small doesn't mean non aggressive. Some T1 lesions can move into the nodes and may not flare up until a few months later. While some T2s are just on the tongue - it all depends on you, your body, and the cancer etc. so ask questions...

Oh and in response to your question, a biopsy is a sample of tissue, sometimes a dr will take it all if its small, but its often hard for them to determine with the naked eye - what's a normal cell or a cancer cell, so often you won't be clear margins after a biopsy..

Best of luck! smile and kudos on the smoking.

Last edited by Cheryld; 06-13-2013 07:21 AM.

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
Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

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Here is the CCC list.

CCC list


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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