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#184281 08-16-2014 04:37 PM
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KitKat1 Offline OP
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Hi - I'm new here, having recently had very early stage tongue cancer surgery. Dentist found a spot on the bottom of my tongue on June 11, and I received my official diagnosis post biopsy on July 2. Lesion was only 3mm and the biopsy had clean margins. Had surgery on July 8 done by a very experienced ENT, to get wider margins, which all tested out to be completely clear of cancer.

I don't technically know all my staging and if it was HPV- or HPV+, but I'll ask that when I go back next week. I'm still healing up from the surgery - had the last stitches fall off about a week ago, and am still experiencing some tingling and pain, but that's going down every day. There is still a little lighter colored raised area where the last stitch came off, but it seems to be going down daily too. Still freaks me out though! I suspect there might be the last of the stitches still under there dissolving (from what I read, they can take weeks to fully dissolve below the surface) plus some scar tissue.

FYI - not a smoker (never have been), but did drink alcohol. I've since given that up - possibly permanently, just don't want to increase my risk factors! My ENT thinks it's possible that my lesion was the result of a place that rubbed on my Invisilign braces, combined with alcohol use. I love my red wine, but I love life more!

It's tough not to remain anxious. Even though both the Oral Surgeon and ENT indicated to me that I'm very lucky and this was caught at about as early a stage as is possible, I can't help but feel anxious. I'll be asking at my next appointment about 2nd opinions to make sure I really don't need additional treatment, and also if I should have regular scans moving forward. I had CT scans pre-op, but no PET scans.

Anyway, that's my story!


Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
KitKat1 #184282 08-16-2014 06:08 PM
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Welcome to OCF! Its always great to have survivors join our online family.

You have been thru alot but you really are one of the more fortunate ones. With the location of the lesion, I doubt it would be HPV+. Most often HPV+ OC occurs when the tumor is in the base of the tongue or tonsil area. Over the past few years, Ive seen several other cases where the cause was thought to be from trauma to the area. Regardless of the cause, your treatment would have been the same.

Best wishes with your continued recovery from surgery!


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
KitKat1 #184284 08-16-2014 06:33 PM
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Thanks Christine. I'm still very anxious about that little bump, even though logic tells me it is just still in the healing stages. I tend to be very anxious about things despite what's rational sometimes, so I think I'll call my ENT on Monday, since my next appointment isn't for a week out. Unless it continues to show improvement, that is - which it already has, so that's why it's so irrational that I'm so anxious LOL. But better to make a fool of myself by calling than to keep going nuts, you know.


Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
KitKat1 #184299 08-18-2014 06:06 PM
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welcome to ocf. it seems like your situation is well under control. it is still wise to keep vigilant and watch for any change once things heal up. it sounds like you have great doctors whom you trust; this is more than half the battle. The other half is for you to try your best to be less anxious. Remember it is caught at a very early stage and now you all are on the lookout like hawks for any potential change. It sounds like everything possible is being done properly. Good luck


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
KitKat1 #184304 08-18-2014 07:28 PM
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Thanks for the warm welcome, Don smile. Yes, I do like my doctors. I feel blessed that my dentist is always vigilant and looking for these things. Actually, it was her assistant who noticed it, before she even saw me. The oral surgeon she referred me to for the biopsy told me I should give her a big hug, because she may have saved my life. And the oral surgeon called the ENT even before giving me the news, only waiting for my permission to fax my biopsy results to him. I left the oral surgeon's office, called the ENT from my car, and had an appointment set up before I even made it the two miles home from the appointment - for just a couple days later. And he had me scheduled for surgery three days after that!

Oh, and the anxiety - well, the area of concern I was troubled over these last couple of days - it's barely noticeable know. It's just the tissue healing up from the place where the final stitch came out and possibly a little dissolvable stitch under the surface still dissolving. That's something I have to work on though - not being horribly anxious every single time I have a canker sore! I need to try to find a good balance between vigilance and freaking out!


Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
KitKat1 #184310 08-19-2014 10:46 AM
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Great news, KK! So glad that everything is going by the textbooks. You definitely have every reason to feel good, and your medical team seems to be first rate. Really glad to read that the bump turned out to be nothing much.

Please keep us informed of your recovery progress. We're sorry you had to join our little family, but we're a pretty nice bunch. And you're one of us now.


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
KitKat1 #184311 08-19-2014 12:00 PM
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Nothing to worry some.
Good luck with your recovery ...


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
KitKat1 #184570 08-25-2014 06:12 PM
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Had my surgical follow up today, and all looks good. I asked about decision to not do any neck dissection and he explained to me that mine was so small and early stage that the protocol is generally to not do that, but to just watch, especially given other factors (my lifestyle, overall health, etc.) However, he agreed that one should always get a second opinion (said he himself would), so I have a referral now to a top ENT / cancer specialist at UW, just to put my mind at ease.

Other than that, provided the 2nd opinion supports this protocol, I'm in the mode of being vigilant, and doing regular follow-up every 8 weeks with my doctor.

Last edited by KitKat1; 08-25-2014 06:12 PM.

Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
KitKat1 #184574 08-25-2014 06:22 PM
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Good for you KitKat1!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
KitKat1 #184702 08-29-2014 07:15 AM
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That's awesome follow a advice keep a close eye on your neck - hugs!


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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