| Joined: Sep 2012 Posts: 3 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Sep 2012 Posts: 3 | Hi, I'm new to this forum - found whilst 'Dr Googling' (which I KNOW is naughty). I'm 42yo female in Melbourne, Australia. Last week I had a very nasty tooth ache & was able to get an appointment that day. Thought for sure I had a cavity. Turns out I have a chronic infection in the root of a 21yo root canal. Was referred to an Oral & Maxillofacial surgeon to have the tooth removed (as there is NO WAY I could have this done in the chair - GA all the way for me). So on Monday I have my appointment. Dr agrees tooth needs to come out. But he was far more concerned with the white patch on the side of my cheek & the side of my tongue. He wants to biopsy it on Monday. Now - these 'patches' has been there for quite some time. Thinking at least a couple of years! I know - 'Why didn't I get it seen to 1yr 11 1/2 months ago'! I seriously thought I had it because I tend to bite the inside of my cheek alot (accidently - at least once a day). And the side of my tongue keeps rubbing up against the tooth next to the Root Canal tooth (as it has moved over the years due to the root canal tooth). The patch on the inside of my cheek looks like 'cottage cheese' that cannot be scraped away. It is about 1.5cm x 1.5cm. There is also a long 'ridge' that is a bit hard. It all seems to line up with where I would bite my cheek. Now for the shitty bit. I have smoked all my life. Gave up 3 years ago, only to take it up again 14mths ago. It will be kicked for good this time. I also had the HPV virus 20 years ago (cervical dysplasia). This is not looking good, is it. I am paralysed with fear. I have 4 kids (18, 16, 13 & 10). I can barely breathe & can't stop crying. I've told nobody at this point. Family know I'm having the tooth removed Monday (24/9), but that's it. Realistically, what are the chances that this is just Leukoplakia? Benign. NOT BLOODY CANCER! As I said - I know 'Dr Google' is bad - but geez - the odds aren't looking great. Any advice will be most gratefully appreciated. Melissa | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Melissa,
The only way to tell if it is cancer is through a positive biopsy. I Recently had a spot that looked just like yours (I called it cauliflower looking). My ENT looked at it and said it was a classic textbook case of Oral Cancer. I was crushed. I did get a biopsy while I was there and the next day got a call from the doctor that the biopsy was negative for cancer. The white spot was damage done to the tissue by previous radiation.
Infections can weep some toxic gunk that can damage surrounding tissue. Damaged tissue in the mouth can look like white bumpy stuff so you are not in the cancer realm yet. Get a biopsy while you are there if possible and hopefully you will be able to ease your mind. If they can�t do a biopsy, get to an Eye Ear Nose and Throat doctor (ENT) for a biopsy.
Here�s hoping that it�s all just collateral damage from the infection.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Melissa, try to keep yourself busy to take your mind of being so worried. By worrying it wont help you one bit, it will only keep you up at night thinking "what if". Get the biopsy done and about a week later you will know what you are dealing with. IF it would be cancer, you already have found the best site for assistance and correct medical info.
Good luck next week!!! 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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Hello and welcome from another Aussie Melissa. There are a few others here from VIC. You already have been given the best advice from Kelly and Christine. The only way to find out for certain is to get that biopsy done on Monday. We all understand the fear and you need to keep busy while waiting for the result which should take around 1 week. With school holidays coming up and 4 children I am sure it will keep you busy until the result is in. I know it is easier said than done but try to stay positive and calm until then. Wishing an all clear result for you and please keep coming back here whenever you need to put down your thoughts or ask questions. We are here for you. Gabriele PS Giving up the cigarettes is a no brainer but you know that! I was also a smoker and even though it is not easy you MUST stop
Last edited by Gabe; 09-20-2012 01:51 AM. Reason: Added PS
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | 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 | Hi Mic281 [quote]Realistically, what are the chances that this is just Leukoplakia? Benign. NOT BLOODY CANCER![/quote] the answer to the question above is that the chances are very good that it's not "bloody cancer". Just to put the whole issue of oral cancer in perspective the stats for Australia according to Cancer Council Australia is that in 2008 over 2000 people were diagnosed with a head and neck cancer (not including brain cancer) which represents about 2% of all cancers being this type. This is lower than the rest of the western world which quotes around 5-6%. Even so, still not very high. So already, the odds are in your favour. On top of that, the vast majority of cancers are diagnosed after age 50 and more than two thirds of them are men. I am not going to work out the odds on that but less than 1 in a million is probably a good guess. Given that you are young and female it is much more likely to be something else. HOWEVER, this should not be cause to relax and do nothing. You do have smoking as a risk factor and leukoplakia can turn into cancer down the track, so you do need to take care of it, be vigilant and kick the smokes. Have you tried Champix? Was magic for me although I have friends who got sad or nauseous on it and couldn't finish the course. I actually enjoyed the vivid dreams too and missed them when they stopped. Try not to stress too much over the bits you can't control(easier said than done, I know) and concentrate on what you can (quitting, keeping doctors and dental appointments, good oral health, eating well etc) . You should not worry too much about the HPV diagnosis either. 99% of people clear the infection within 1-2 years, and cervical HPV has no link with oral cancer other than it is the same infection. It does not travel through the body by itself so unless you are double jointed, this is not an issue for you (if you get my drift) Let us know what happens won't you? 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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Aussie Aussie Aussie!!!!
Love my peeps from Down Under! Great feedback Gabs & Karen, ya'll rock. Melissa you would do well to listen to these gals and plug in to them my dear.
Keep your chin up!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | 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 |
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: 5,260 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 | MLC welcome... I sincerely hope you are just passing through. Good luck monday. If this is in the oral mucosa and IF it does come back positive for cancer - then it's likely not HPV related. hopefully its just a callous (thickened skin) you built up to protect your mouth from the biting etc... I had one of those at one point. regardless good luck monday and try not to freak out until you get a definitive answer.
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 2012 Posts: 3 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Sep 2012 Posts: 3 | Thanks for all the advice. I'm at the hospital now, waiting to go in.
What kind of pain can I expect after the biopsy? It is both cheek and tongue.
I'm praying this is nothing. | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Missed your post yesterday and hope you are OK? I have had many biopsies and some are less painful than others. You should have been given a script for pain medication which I only remember using for a few days (and not at all on a couple of occasions). Now you need to keep yourself busy while waiting for the result. I am sure this will not be too difficult with the school holidays these next 2 weeks I am also hoping it is nothing but please keep us posted. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2012 Posts: 3 "OCF Down Under" Member | OP "OCF Down Under" Member Joined: Sep 2012 Posts: 3 | So, I was told to ring for the results today - have been so anxious (and still in a fair amount of pain from the tongue biopsy - haven't been able to eat since Monday morning) - only to be told that path results can take up to 10 days, and to ring back next Wednesday!!!
Also, how long for a tongue biopsy to heal?? He did tell me they were taking a generous slice, but 3 days past, and still hurts as much as the 1st day!!! Talking a little better, but eating is nearly impossible & I can only drink if I squirt it to the back of my throat with a water bottle. Tooth removal & cheek biopsy are fine | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Be happy they took a good slice. Small samples tend to give false results, and if you are going through this pain, you want it to be accurate. Yes, the biopsy site does take awhile to heal, but usually handled with OTC painkillers.
You have now entered waiting hell. We all know it, and have lived it - and we wish there was some way to make it an easy process. Keeping busy is one of the best ways to deal with it, and another I like is to allow yourself a period of time for concentrated worry, and after that if your mind wanders - be disciplined and wait until the next dedicated worry session. Worrying truly is a non-productive activity, but oh so human.
For now, Hugs.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi there,
We are from Melbourne as well and my wife recently went through Surgery @ the Royal Melbourne and we are currently awaiting our Radiotherapy / Chemotherapy treatment at Peter Mac.
If you are having pain from the biopsy, either ask your GP to prescribe you some Endone (Oxycodine) OR take regular doses of Panadol (2 doses every 4 hours) which both did wonders for my wife in managing the pain.
I never knew Paracetamol would be so effective against mitigating the pain but it definitely did the trick for my wife!
Hope that helps.
Jay
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
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