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Joined: Jun 2012
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Tinara Offline OP
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Hi ALL

Amazing forum. So much info and bravery...I am a 51 yo female, non-smoker, very light drinker, HPV positive who finally had a tongue bioppsy on 6/8/12. Have had leukoplakia on side of tongue with a constantly changing, very painful sore in area. Also a sore throat for over 1 year on same side. Drs kept saying there wasn't anything there, but I constantly feel it. My tongue has been an issue for over a year now, and I'm really worried. Found this forum qnd feel I am better prepared for the dx next Friday, good or bad because of it. Any words of wisdom while I wait?

Tinara

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Hi Inara,
Glad you have found this forum. I am farely new to this forum and haven't really posted much, but you are right there is a lot of wisdom and emotional support from all. I wish you the best next Friday. It is very hard to wait, but hopefully you will get some good news to find out what is really going on.
Robin


10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
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Hi Tinara! Hope your biopsy turns out to be nothing serious! If it would be cancer, then you have found the best place for info and support. Keep busy, read a book or do things that require concentration to help pass the time. I know its very hard to not worry but you will feel a whole lot better if you stay productive while waiting.

Good luck!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
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4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
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3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
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klo Offline
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You are doing all the right things by seeing a doctor and getting a biopsy.

Keep telling yourself this.

The chances of it being cancer are not high as this is an uncommon cancer - especially for a non smoker. However, if it IS nasty, then you can be assured you have done everything to ensure a good outcome by being so vigilant.

Just a point regarding the HPV positivity. The HPV that causes oral cancer is usually type 16 or 18 not the garden variety wart causing sort of which there are over 140 types. Even the type 16 or 18 sort is cleared by 99% of people in one to two years. So, depending on the type and how long ago you were diagnosed, your positive HPV status might not be anything to be concerned about right now.

good luck and let us know

Karen


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
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Hi there - also to add to the above information - if it is a cancerous lesion on your tongue likely it's not related to your HPV status. usually it's base of tongue cancer or tonsillar cancer that is HPV related. Base of tongue is the part of your tongue that runs down your throat and is not visible. Hopefully it's nothing! Hugs and good luck.... but if it Does come back positive.. Push to have it dealt with asap, and for oral tongue cancer the first line of defense is surgery then rads and chemo depending on the staging and involvement. Take care.


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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HPV+ cervically is not related to oral HPV+ nor has it been shown to ever "commute" from the cervix to the oral cavity within the same host. Always best to stay on top of anything strange in the oral cavity that doesn't resolve itself in a few weeks. Do keep us posted but let's hope it's nothing serious.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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When will results be in?


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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Tinara - you're definitely doing the right thing by having it checked out. I second all the comments above. I know it's tough waiting, we've all been down that road. But hopefully you'll get a clean diagnosis.

Hang in there... and keep us posted!


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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Hi Tinara:

Wishing the best for your results. If the news turns out to not be so good, you have a lot of people to turn to on here. I'm new to the group but am amazed by all the information here. Take care.


Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
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Tinara Offline OP
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Thank you, everyone, for all your support.
I got the results back today and, unfortunately, it is early stage tongue cancer.
I will be scheduled to have the nickel size lesion removed, and a PET scan to check for possible metastization. My lymph nodes do not appear swollen, so hopefully not. I will keep checking in with all as energy permits....I am incredibly tired. Could be simply dealing with this new, added challenge.
You are all such a true Godsend! Thank you for being here!
Love to all,
Tinara

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