| Joined: Dec 2014 Posts: 5 Member | OP Member Joined: Dec 2014 Posts: 5 | My husband has non- HPV tongue cancer. He does not smoke, drink, dip or chew. Our first diagnosis was in August 2013. It was very small so we only had surgery. In March 2014, after months of my husband complaining of tongue pain, we had a positive biopsy. This time we went to MD Anderson for treatment - six rounds of chemo, 30 radiation treatments and surgery with reconstructive flap. Well, a couple of weeks ago hubby goes for dental check-up and the dentist tells him he has an "ulcer" on his tongue. This is how we first discovered the cancer in 2013. Needless to say, I am completely freaked out (Hubby is actually taking it well or he's just trying to keep me from losing it.). He has an appointment Jan 15th to return to MD Anderson. We emailed them and they said to rinse with salt water until then...We keep hoping he just bit the flap. Does anyone have experience with this? The sore has been there 3 weeks now. Anyway, that is our story. It really sucks that we had to find out before Christmas. We haven't told the kids or family. At least they can have a nice Christmas. Just needed to tell some people who might understand how scared I feel. I really thought it wouldn't come back so soon after we did everything that could be done this time.
Caregiver to Bill 45 yo Dx Sep 2012,BOT,SCC,-HPV, T1 NO MO Surgery w/ rad neck dissection clr margins Trmt at local hospital Recurrent Dx Mar 2014, BOT, T2 NO MO 9 cispltn, 3 docetaxel, 30 IMRT, surgery with flap repair, clr margins Clr CT 11/14 Trmt at MDA
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Shannon. Is this ulcer on the Flap? I dont think the cancer usually recur on the flap, at least that is what we were told. Kris developed an ulcer on his flap earlier this year, which did scare me. On re looking in his mouth , it looked like an upper tooth was causing pressure on that exact spot. We went straight to our ENT team who said it did just look like an ulcer, but biopsied it. The biopsy was negative, just an ulcer. Rinse it with the salt water, but you could also buy a paste for mouth ulcer ulcers called Oracort. Kris used this and it certainly did help the ulcer clear up. An ulcer could just be an ulcer. You won't know any more until you have had it biopsied. So please don't convince yourselves that this is a recurrence just yet. Don't borrow sorrow from tomorrow. Try not to overly think this and I wish you both a lovely Festive Season with your Family. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Dec 2014 Posts: 5 Member | OP Member Joined: Dec 2014 Posts: 5 | Thank you Tammy!
Yes, it is on his flap. We were wondering if it could reoccur there or not. I will stop by the store on the way home and pick up the Oracort.
Trying not to freak out:)
Caregiver to Bill 45 yo Dx Sep 2012,BOT,SCC,-HPV, T1 NO MO Surgery w/ rad neck dissection clr margins Trmt at local hospital Recurrent Dx Mar 2014, BOT, T2 NO MO 9 cispltn, 3 docetaxel, 30 IMRT, surgery with flap repair, clr margins Clr CT 11/14 Trmt at MDA
| | | | 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 | Welcome to OCF! After radiation healing is compromised and will take much longer than in a patient who has not had rads. Hopefully the sore is not cancerous and will heal on its own. Just keep repeating... "its NOT cancer until the biopsy says it is.
Best wishes with everything! 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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Ditto - "its not cancer until the biopsy says it is." Hang in there. No time of year is good to deal with limbo land but try to think not cancer until proven.
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 | | | | Joined: Dec 2014 Posts: 5 Member | OP Member Joined: Dec 2014 Posts: 5 | It's NOT cancer until the biopsy says it is. It's NOT cancer until the biopsy says it is. It's NOT cancer until the biopsy says it is. >>>> Thanks!
Caregiver to Bill 45 yo Dx Sep 2012,BOT,SCC,-HPV, T1 NO MO Surgery w/ rad neck dissection clr margins Trmt at local hospital Recurrent Dx Mar 2014, BOT, T2 NO MO 9 cispltn, 3 docetaxel, 30 IMRT, surgery with flap repair, clr margins Clr CT 11/14 Trmt at MDA
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | The phrase: "its NOT cancer until the biopsy says it is" is very important to remember.
Another one that has been important for me, and has has saved my sanity many times, is to remember that if a mouth sore or irritation has been there for two weeks or more, it should be checked out by a qualified ENT.
When in doubt, check it out.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I'm going to ditto a few people here... I've been there and chances are it's not cancer but more related to the radiation to his mouth and its sensitivity I have gotten them before as well. They do happen even now - a few years out. Hugs and best of luck and as always do have it checked out,
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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