| Joined: Sep 2012 Posts: 13 Member | OP Member Joined: Sep 2012 Posts: 13 | Just curious as to some stories out there of negative findings from a biopsy that later turned out to really be cancer. Does this happen alot, or are they pretty accurate? The reason I ask is because I just got my results back from a scalpal biopsy on my tongue, and thank goodness they were negative. The surgeon said that the white patch on my tongue, (that had been there for several months), was "reactive" tissue, or something of that sort. I had seen two oral surgeons prior to the biopsy, and they both seemed so sure that the white patch was cancerous. One of them even photographed the area on my left ventral tongue, and looked me in the eye and said that he was sure after a biopsy that it would come back as cancerous. My second opinion agreed, and did the biopsy. So I was rather shocked when I got the call that no follow up was needed and that it was not cancerous. I'm ecstatic, to say the least, but these two basically ruined a month and a half of my summer with their pre diagnoses. Anyway, thoughts? | | | | 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 it be determined if something is cancerous. A well trained, experienced doctor can suspect something is cancerous or nothing to worry about but they wont know for certain unless its biopsied. I do not know the rate of wrong biopsies but just like anything it certainly would be possible. A biopsy is only as good as the person studying the tissue and posting the results. Human error can happen but it should be a relatively rare occurrence. 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: Oct 2011 Posts: 67 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Oct 2011 Posts: 67 | I would get a second biopsy/opinion or at the very least, watch the area very closely. If the area on your tongue changes in any way - have it looked at again. I had two biopsies that were negative. I also did not act immediately as I was swayed by false information that oral cancer doesn't usually hurt and my tongue was VERY painful! It can hurt a great deal if the cancer is on your oral tongue. I still remember the first appointment with my ENT who said "Well, we could just zip it off, but it would have the same risk as a tonsillectomy - let's wait for the biopsy." I sure wish now that I'd had it 'zipped off'  I really don't mean to alarm you in any way, just know that even if a false reading of a biopsy is rare - it happened to me. Do you have a copy of the pathology report? And did you have a tooth that was irritating the area? It would be interesting to know what your tissue was reacting to. My situation may be nothing like yours at all, but I'm a little sensitive about the whole thing I guess.
Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation. Leukoplakia Bx Feb 2011 - Lichen Planus. Bx May 2011 - Hyperplasia. Same sample retested as SCC. June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia. T3N1M0 Stage IV. | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Hmmmm . . . I think you should follow up with an ENT. My cancer was on my left ventral tongue, and it is a common spot for scc.
As far as I know biopsies like yours are accurate, but as you've seen in Shauneen's reply, perhaps not always? And, things can change. You obviously have had some kind of irritation there. You don't say if you have any risk factors for oral cancer--tobacco use of any sort for instance. That, combined with the white patch, would be reason to watch it. The fact that not one but two oral surgeons were highly suspicious of cancer would keep me on the alert. You're lucky to have apparently be cleared, though.
Best, Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | 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 | No biopsy, diagnostic test is 100 percent accurate, but some are very close, and a direct biosy is one, but rarely, due to contamination, human error, inadequate discription, and not enough tissue section where biopsy was taken from, failures can happen. White patches, leukoparia, has many causes, and does not usuualy mean cancer as much as the red patches, erthoplakia, does, and id usually a concern. Although not used often in oral biopsies, a fine needle biosy can also be used to check for deep cancer cells, but the oral scapel biopsy is the gold standard. Good luck with everything.
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: 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 |
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: Sep 2012 Posts: 13 Member | OP Member Joined: Sep 2012 Posts: 13 | Well I will definitely be watching the area closely. He took a pretty good portion of the suspect area. Tongue was in pretty bad pain for a week afterwards. I have not received a copy of the report yet, just a phone call from an aid at the office telling me it was not cancerous. I do have two fillings that hit the area and I will be asking the dentist to correct them as I have no other risk factors that I know of. Rarely drink, dont smoke/dip, etc. The one other symptom I had with the white patch was that the left side of my tongue would become irritated by certain things, like mouth wash and tooth paste. Now it was very mild, but noticeable. I'm waiting for the tongue to heal completely to see if this continues. I appreciate all of your responses, and knew I'd get some good information here. I just know that this disease is nothing to mess around with after watching my aunt deal with it.
Last edited by DB7; 09-30-2012 06:53 AM.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Hibthere - definitely watch it - I had a negative biopsy 2 years later a positive - same area - my tumor was deeper than the initial biopsy removed. So if there are any changes - high tail it back!  glad its clear.
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: Dec 2010 Posts: 291 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | I have to tell you that I noticed a slight burning irritation when consuming some foods, liquids, or chewed gum, etc . . . I never used mouthwash, just flossed & used toothpaste. I noticed that in the area of my tongue before the ulcer appeared. That was my only sign that anything was amiss before the ulcer. By itself I did not think it meant much, apparently it did.
If you indeed have a problem there the good thing is you should be able to catch it early. Find a good ENT though, one that sees oral cancer.
Best, Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | Joined: Jan 2012 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2012 Posts: 27 | I have had a negative biopsy myself, but still have strong concerns, so I know where you are coming from there. If you still have concerns then I would suggest continuing to pursue the issue. In the meanwhile, though, try not to stress too much.
Perhaps you could request an imaging study of some sort (MRI, CT) if they haven't done one already. If there is an area of concern deeper than where they took tissue they may be able to see it that way, and it may put your mind more at ease. Another option I've heard of is having your biopsy sent to a second pathologist for review. If they took enough I believe that is possible. I don't know how to set that in motion, but I'd guess you can talk to whoever took your biopsy about it. I have mostly heard about this being done to confirm a malignant report, but I don't see why it couldn't be done to double check for cancerous cells. Maybe someone who knows more can weigh in there.
33 yr old female, former smoker of too many years. Currently awaiting results of a neck ultrasound.
| | |
Forums23 Topics18,235 Posts197,106 Members13,293 | Most Online1,788 Jan 23rd, 2025 | | | |