| | Joined: Aug 2011 Posts: 5 Member | OP  Member
Joined: Aug 2011 Posts: 5 | Hello,
I have had a white patch on my ventral tongue for probably 16 months. In June of 2010, my dentist did a brush biopsy which came back negative. However, a few weeks ago my dentist said it had gotten significantly bigger, so she referred me to an oral surgeon. I saw him last Wed. and he did a toludine blue test which came out positive. He said that simply means there are "rapidly dividing cells" and does not necessarily mean that I have cancer. He then did a biopsy and I am awaiting the results.
My question is: should I be freaked out about the toludine blue result? I have scared myself to death reading studies showing that it is accurate at identifying cancer, although other places seem to say it gives a lot of false positivess. Thanks for any help.
Last edited by Jasonkir; 08-12-2011 01:45 PM.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Jason:
Just wanted to welcome you to the Forum and assure you that you will be getting all sort of information concerning your problem from other Forum members. I don't have any experience with your problem, but it sounds from what you said that if it were cancer, it would be low grade and easily treated. You will find out that most of us freak out (particularly ME), whenever waiting for a biopsy or test results. I will certainly say a prayer that you do not have cancer and all will be okay.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Aug 2011 Posts: 5 Member | | OP Member
Joined: Aug 2011 Posts: 5 | Thanks very much Julieann. | | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Hi Jason, welcome to the OCF. While you wait for the biopsy reports, which unfortunately I anticipate to be positive. White patch has stayed too long without healing, even though it may still be a precancerous leision or dysplasia. Ventral tongue is the high risk area of developing squamous cell cancer.
Yes, Toluidine Blue is used for cancer screening and seems to be reliable test but again it is not a conclusive test and that is why the biopsy.
I wish to be wronged with the biopsy coming to be negative. Take good care and all the best.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | Joined: Aug 2011 Posts: 5 Member | | OP Member
Joined: Aug 2011 Posts: 5 | I guess I appreciate the honesty, but I mean it could be fine, couldn't it? I am a non-smoker/non-drinker, and am only 32 years old. | | | | | 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 Jason. Sorry you are here and facing the possibility of having oral cancer. Sadly it is not an old person's disease anymore. There have been many on here in their 30's and quite a few even younger, their 20's. The only way to tell is thru the biopsy so its good that you have gotten one. Sorry but I am not familiar with many specific medical test names so I do not know about the toludine blue test. I know waiting is difficult and you are worried but do your very best to stay busy so your mind doesnt dwell on the "what if's". At this point you dont need the added stress to hinder your healing. Hang in there, we are all behind you rooting for a negative test.
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 2011 Posts: 5 Member | | OP Member
Joined: Aug 2011 Posts: 5 | thanks christine -- shame these things take so long | | | | | 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 | Hi there and welcome - I too am not familiar with the test you mentioned - but the biopsy is an old friend  and not one I like particularly, but they take so long because they resect the tissue and go through it thoroughly. Try not to worry until you get the results but do educate yourself in the mean time. Find out what the treatment is, what to prepare for etc. That way If you do get a cancer dx you will be prepared to ask the important questions and know what to expect - for the most part . Knowledge is power, and advocacy for yourself is important. Also if you don't get a cancer dx, you will be prepared and know what to keep an eye out for if the situation persists. I'm not as young as you but I am a vegetarian (almost vegan) and don't smoke, drink, or do drugs... In fact Im not even a coffee drinker. And I had my ulceration. For 6 years - with one negative biopsy. So it can happen. I'm not trying to scare you - just trying to tell you to educate yourself. The knowledge will never go to waste. Hugs and 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: Aug 2011 Posts: 5 Member | | OP Member
Joined: Aug 2011 Posts: 5 | no cancer, just mild dysplasia which he wants to remove -- pretty good news, right? thanks for all your comments. | | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | Great news! I'm sure you are very relieved. Make sure you keep a very close eye on your mouth from now on. So glad to hear you got a good result.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Yes Jason, great news. Do as doc says and keep up with regular followup regimen.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | 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 | That's awesome!!! Good luck! You'll be a little sore bit it definitely beats cancer by a long shot.
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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