| | Joined: Oct 2013 Posts: 3 Member | | Member
Joined: Oct 2013 Posts: 3 | Hi to everyone, What a goldmine of information and support,so glad I found this site. I am only here because I decided to stop ignoring the pain in my tongue and take some active steps to find out what it could be. I have a history of periodontal problems which I've addressed. Tooth pain 3 weeks ago back molar, resolved itself through salt water rinses, and PerioMed rinsing. Thought it was receding gum sensitivity. Then followed by tongue pain, thought I had bitten it. The pain continued,noticed a slight bump/indented lesion on back side of tongue.Seemed to be worsened by certain food and it got very swollen and enlarged and painful the other night but was down by the morning. I am going to my dentist on Friday. The pain and tenderness comes and goes, seems like it gets inflamed and then settles down. I don't know if my HPV diagnosis is of importance but my doctor told me after my last pap at my annual that I had high risk HPV but no changes. Anyway I wanted to thank you for having this forum, support and so many that I can turn to for information as I try to figure out what is going on. Carla | | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Carla:
I just joined a few minutes before you did, so I'll be keeping an eye on your posts and treatment.
I don't know enough to make any suggestions, just lending moral support.
take care
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Oct 2013 Posts: 3 Member | | Member
Joined: Oct 2013 Posts: 3 | Hi there and thank you for saying hello, I will be reading, reading, reading and trying to take all this in. I notice that your info shows HPV 16 diagnosed - I have not had the testing done to categorize what strain of HPV I have. Probably because it scares me a bit but I know probably that I should get that done. Baby steps Thank you for your support, most appreciated. | | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Welcome N74g and ccarla123, I'm Shawn I noticed that You and I have just about the same cancer N74tg. I should change my Signature to reflect my HPV+ 16 status. I don't know who you guys have met yet. But let me assure you that there are some super smart/experienced people here that will help you with questions and support along your (hopefully short) journey with cancer and how to beat the heck out of it. Carla, I know you mentioned that you should get your signature done. May I ask what type of cancer you have, or suspect you have? I am sure we will be talking more soon. In the meantime, look around Learn some of the many Abreviations. And just know that you have found A great resource here! Take care, Shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Oct 2013 Posts: 3 Member | | Member
Joined: Oct 2013 Posts: 3 | Good morning Shawn. I am so very new on this journey. All I know is this - I have pain in the back side of my tongue that has not resolved itself, there looks like there is a lesion or a white spot/lump and I also know I have an HPV diagnosis from going in for my women's annual a year ago. So, maybe I am jumping the gun and committing the cardinal sin of searching the internet for symptoms and becoming unnecessarily alarmed. That is what everyone says these days: do not go and google  But since I am aware of the HPV/cervical/tongue/oral cancer connection,and with my new symptoms, I found myself here on this forum trying to educate myself before I go in to my dentist on Friday. Thank you Shawn, good suggestion on reading up on the abbreviations. Thanks much! C. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Welcome to you both! Please try to post on your own threads so it doesnt take away from the other persons replies. The rule goes like this.... Anyone who has a sore in their mouth for 2 weeks or longer and it has not resolved itself should be checked by a professional. When I say professional, I mean an ENT or oral surgeon who is very familiar with treating oral cancer patients. Many dentists have never seen oral cancer and do not do biopsies but some do. Only a biopsy will for certain tell you if you have cancer. By visually looking, they are just guessing. Only thru the tissue sample and pathology report will you know for sure. Hope you both do not need our assistance, but if you would we are here to help you. Good luck! PS.... Cancer normally will not show as intermittent symptoms. Dr Google will tell you all kinds of illnesses if you look hard enough. Do yourselves a favor and attempt to relax, stay busy until you can get checked out. Also, please take a look at this link for help with using our forum and a signature. Forum Etiquette Thanks!
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: 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 | RE the HPV "connection" to cervical cancer.... HPV has over 200 known strains but only 4 have been associated with causing cancer and only one HPV16 is the main culprit in oral cancer BUT and this is a HUGE BUT, just because you have or may have HPV cervically doesn't mean that you have it orally as there is no proof that the virus travels from the cervix to the mouth without physical intervention. Unlike the cervix there is no test for the presence of HPV orally unless suspected cells are biopsied and sent for pathology. All this aside you do need to follow through with any and all appointments until you get some answers.
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: Mar 2002 Posts: 4,918 Likes: 71 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 71 | A very small correction to David's post. There are 9 HPV's positively known to cause cancer and another 6 that are suspect because we find the in conjunction with these nine occasionally. Most we have no idea what they do if anything besides live with us as silent passengers. A few cause warts (exofitic growths) better known as papillomas. We are identifying new ones all the time. 10 years ago we thought there were about a hundred subtypes, now we are confident of about 200 types. They seen to stay focal to one area and do not spread through the lymph or circulatory system to move around the body. So cervical infections stay cervical etc.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | Usually a lesion on the tongue isn't related to HPV - often HPV related cancer presents as base of tongue - down the throat - or tonsils, and sometimes it will have an occult primary and be found initially in the nodes. An actual lesion on the tongue which sounds like what you have is caused by heavy smoking or drinking - or no known cause. What you have should be looked at by an ENT to expedite things. A dentist is a first line of defense but since you already identified that you have a problem, you should ask your family dr. For a referral to an ENT. Welcome.. And best of luck.
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 | When in hell did we move from 4 to 9 possibly 15? lol
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.
| | |
| Forums23 Topics18,305 Posts197,297 Members13,504 | | Most Online7,516
Mar 21st, 2026 | | |
|
