| | Joined: Jun 2012 Posts: 3 Member | OP  Member
Joined: Jun 2012 Posts: 3 | 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 | | | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2012 Posts: 60 | 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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!!
ChristineSCC 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  | | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | 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) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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.
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 |
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
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | 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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2012 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 31 | 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
| | | | | Joined: Jun 2012 Posts: 3 Member | | OP Member
Joined: Jun 2012 Posts: 3 | 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 | | |
| Forums23 Topics18,247 Posts197,132 Members13,319 | | Most Online1,788
Jan 23rd, 2025 | | |
|
