| Joined: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Hi everyone! I'm 29 years old and a non smoker. Mommy to a beautiful 2 year old who still nurses due to rare food allergies. Of course all things that scare me medically happen on the weekend. While I was brushing my teeth last night I noticed a white/yellowish bump on the side of my tongue. It's painless and I have no clue how long it's been there. Definitely not an ulcer, I've had those and know how painful they can be!! I'd love any advice on who to see. I have a union dentist who I don't really trust knowledge wise.. Should I see an ENT, Oral Surgeon or who?? I attached some pictures - any advice would be appreciated!! I'm freaking out  The picture is the same bump but all different angles. I'm scared it could be cancer..
Last edited by ChristineB; 11-16-2014 12:07 PM. Reason: removed photos
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Welcome to OCF. We aren't doctors but one common thing about most oral cancer is it does not grow much in a day or two. Most likely it is not oral cancer but watch it for a couple days and call the dentist office and ask if they perform screening for oral cancer. If they do, then go get it checked there. If not, an ENT is the next and better option to detect oral cancers.
I suspect you googled around and found this place. Please try to limit any more searching as 99% of what you find is BS and just scary nonsense. This place is backed up with medical experts.
Stay calm but vigilant. Remember oral cancer is very low chance cancer.
Don
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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Could it start like this? I'm just curious what else it could be? I'm terrified  I was just hoping someone could help calm my fears. My dentist said she would look at it but would refer me to an oral surgeon if she didn't like the way it looked. | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I would rush to the dentist. From what I see, you should work on oral hygiene more. Your tongue does not look healthy.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | I understand your anxiety. Trust me, we all get it. Again, I am not a doctor but even if it was cancer and that is the extent of it, it should be pretty standard to remove at this point.
There is no way right now to help determine if it is cancer. The only way is for a medical professional to examine you and possibly perform a biopsy to make an assessment. The ONLY certain way oral cancers are determined is via a biopsy so no matter what you read or get responses here are not going to get you that answer.
So, back to anxiety. We know the feeling. What you have to try to do is to slow down the mind from going wild with the what ifs. You can totally freak yourself out, even having your funeral planned if you don't get control over your anxiety.
Take one day at a time. Remember, even if it is cancer, a couple days is not going to change anything in terms of diagnosis or treatment or outcomes.
It is much the same as driving down the road thinking every oncoming car is going to swerve over and kill you in a head on collision. You learn to manage these possibilities. You need to do the same with the little white dot being just another well little white dot. It is not going to kill you and almost with certainly it is not cancer.
Lastly, another standard saying around here is it is NOT cancer unless PROVEN.
Hang in there and do the best to remain convinced it is NOT cancer and one day at a time until you see the doctor/dentist.
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: 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! I have removed your photos. This site is made up of oral cancer patients and caregivers who will try to help you. Unfortunately we are not qualified to know from looking at a photo what is wrong (if anything).
My suggestion would be to get checked out by an ENT. Our "golden rule" around here is.... "Its not cancer until the biopsy says it is. Any sore you have had in your mouth for 2 or 3 weeks that does not heal by itself should get checked out by a professional."
Hope its nothing serious. Best wishes!!! 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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Thanks everyone. Uptown I have a lot of dental issues could have a Mercedes in stead of the work I have had done in my mouth.
As for an ENT can I see any ol ENT? I'm in NJ and there's a bunch by me but only seeing regular stuff listed on their sites nothing about OC. Does there happen to be any list for recommended doctors in states? | | | | 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 | No list of doctors on this site. Look for an ENT who preforms surgeries, they are the kind who have extra years of schooling and will be (hopefully) most experienced in treating oral cancer patients. When you call for the apt. ask if they treat OC patients and how often. You want someone familiar with mouth issues, not the type of ENT who mainly puts tubes in childrens ears. 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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | So the ENT didn't want to biopsy today and said it looks benign. Like a little pimple but it's still painless. He said to come back if it's still there in two weeks. Is that okay? I've known about it a week but not sure how long it's actually been there. | | | | 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 | Only thru a biopsy can the doctor determine for certain if something is benign or cancerous. As I stated above... any sore that has been in your mouth for 2 or 3 weeks and it has not resolved itself needs to be thoroughly checked by a professional. Wait it out and hopefully it will heal on its own. 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: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Sounds like good and typical advice at this point. If it does not look gone or on it's way gone, then go back for certain. Usually the initial lap around the track is to take some antibiotics. Wait two weeks. No change then take a biopsy. Given it has been checked and seems quite small try to stay calm as best you can. Good luck!
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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | My ENT did a brush biopsy today. How accurate is that? | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | I've heard both good and bad reports about brush biopsies. I guess about all you can do is wait and see what results come back from this biopsy. If positive, it's probably wise to do a conventional biopsy (tissue removal) for confirmation. If negative, I would still keep a close eye on the tissue, daily inspections, etc.
From your comments so far I'm still not convinced this ENT is experienced in oral cancer. Have you confirmed that? Many of these guys are not what we are looking for.
take care, Tony
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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | He actually didn't think the first ENT I saw knew anything. I went for a second opinion with this dr. The first doctor just told me our mouth does weird things and had no clue. The doctor took the brush biopsy said bad results 24hrs regular results 2 weeks and follow up 3 months. However I don't want this white thing which has absolutely no diagnosis on my tongue that long. 
Last edited by ChristineB; 11-25-2014 12:01 PM. Reason: removed link
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 |
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Paul, is that just referring to the soft brush or also the OralCDx brush test as well? I didn't see that mentioned there. | | | | 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 | Often a brush biopsy will not have conclusive results. A surgical biopsy may be required. 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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Is that true for the OralCDx brush too Christine?
Last edited by midsummer; 11-25-2014 12:15 PM.
| | | | 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 | As far as I know, yes. From what I understand a brush biopsy picks up a bunch of cells at a time. It does not pinpoint an exact area. If this is the type of biopsy you have had done, dont be surprised if you have to have another more exact one if you get inconclusive results. 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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Thanks Christine. I have the first ENT who was clueless that said he would do a punch biopsy on the 2nd if the spot didn't go away, and then the followup ENT who is knowledgable about oral cancer who thinks it may be some sort of fungal or something that may just be there forever. He did the OralCDx brush biopsy yesterday and said we'll see the results in 2 weeks. He doesn't seem to want to do a full on scalpel biopsy or punch biopsy. I spoke with someone over at OralCDx (something they normally don't usually do, but he did out of a courtesy) I watched a video and it shows the process. They told me they have a 2% fail rate, as does the scalpel biopsy. I'm not sure how true that is though. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I have no personal experience with them having had a punch, and an incisional biopsy once myslf, other than the usual FNAB's, surgical biopsies, but thought the article may have included the OralCDx, which is a trade name. Here is an insurance article that mentions the OralCDx. http://www.aetna.com/cpb/medical/data/600_699/0686.html
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Personally a brush biopsy is a brush biopsy - name aside. That said the issue is this; it takes the surface ONLY. So you may have some dead skin, maybe some fungus - possibly inflammation, but it's what's underneath that may make a difference. My first biopsy came back inflamed tissue (and that was a surgical biopsy). The entire underside of my tongue was red, inflamed and painful but there was no indication of an ulcer or anything. The tumor was inside my tongue. Now it's unlikely this is the case with you as it is painless for you therefore anything going on is likely to be superficial. However. I would do as he says, get the results if they are negative for cancer, then keep an eye on the area, and if it changes go back immediately - if not do the follow up after three months. If you are still concerned after the results go for the punch biopsy on the second. hugs and hopefully it's nothing.
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | I wouldn't trust what Oral Cdx tells you. Brush cytology which is a very old idea, has a way lower success rate of being accurate than you were quoted. It's been used in cervical sampling since the 1940's. There are a variety of issues with it. In my mind what Christine has already said, it's relatively superficial, which MAY be enough, but when it comes to this kind of thing I want a gold standard, black and white answer� what is it? That only happens when the pathologist has a really good representative sample. Part of getting that, you can not get with a brush system, no ones brush and there are several out there; and that is architecture. The layers of the cells from the upper epithelium down to the basal cell layer where all cells including cancer cells are born. When you do a punch or incisional biopsy all these layers are there in the proper relationship, and the architecture of them is intact. When you do a brush biopsy, you get scrambled eggs. A very important bit of information is missing.
I have personally banged heads with the owner of Oral Cdx for years. I think it has its place, for superficial quick looks at things which do not have the characteristics of a high risk lesion. More than that, I'm not a fan. But I butt heads with Mark at Cdx because of their misrepresentation of what this technology will and will not do, and the marketing rhetoric that passes for science in that company. There is a place for brush biopsy in the world of diagnosis (not discovery), but at the end of the day no one moves forward to treatment on a brush biopsy finding. If that is the case (it is), then the only argument for the brush is that it is way less involved, and is quick and to the point - but it is far from the equal of a punch or incisional biopsy which are the gold standards.
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: Nov 2014 Posts: 10 Member | OP Member Joined: Nov 2014 Posts: 10 | Thanks Brian. The second opinion doctor refuses to do anything until he sees the results from the brush biopsy. He first told me he thought it was fungus then during the brush biopsy visit said it is like a deep pimple. I don't want to hear what they think it is... I've known about it for two weeks and there's no sign of it going away so far.. Is scalpel or punch biospy better? I still haven't canceled the appointment for the punch biopsy on Tuesday. The first ENT said it should go away but had no clue what it was. They both swear it's not cancer but neither have a clue what it is.. I'm still freaked out and could have had answers by now. Do they just leave a hole in my tongue after the biospy? I just worry about infection since I'm allergic to antibiotics and still breastfeeding my daughter. | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Punch biopsies are anywhere between 3-5 mm in diameter. So from the size of a BB to just a little larger. Most of the time they do not even put a suture in the 3mm punch holes and they heal in by what is called "secondary intent" by the body just fine without need for closure. Most of the 5mm ones do the same, but I have seen surgeons put one suture in for the heck of it. They heal from the bottom up, so do not be alarmed if the hole is still there for a few days. It should not bleed as the clot forms almost immediately and stays put if you don't mess it it all the time. (Most do mess with it, and there is some small blood on your tooth brush etc. for a few days if you do. For sure a fungus can persist for weeks even months, so our hard rule of checking anything that does't heal in two weeks is not an indicator for sure of cancer, but that the thing needs a definitive diagnosis. If it is some kind of viral, bacterial, or fungal infection great, now they know what it is and appropriate treatments can be initiated to deal with it. Scalpel and punch biopsies are equal, and up to the surgeon. A scalpel biopsy will probably take two stitches to close up. It isn't much more radical but the shape of the wound is more prone to slower healing without suturing. Whatever you have done, just gently keep it clean and infection should not be a concern.
Last edited by Brian Hill; 11-30-2014 02:58 PM.
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. | | |
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