| Joined: Feb 2013 Posts: 17 Member | OP Member Joined: Feb 2013 Posts: 17 | thanks I have taken all three gardasil shots unfortunately there are many strands of that virus and there is no test for men to check whether or not he has the virus...and thanks for the advice in regards to Mexico i think i did that out of desperation and lack of an accurate diagnosis from doctors out here...
Cheryld thanks i myself had an excisional biopsy done the first time around and its been about three months since i had it done. Im going to consult a different ENT and demand a second biopsy perhaps i should leave and not mention the results of my first biopsy hence maybe they feel as if a second biopsy is not necessary relying on the results of the first. Perhaps thats a mistake I have done. I just really hope its not cancer. I had a laryngoscopy done at the hospital and the doctor said that all he saw was irritation of my throat and voice box due to the acid reflux and the cat scans seemed fine...but then im concerned because the small lump remains its not going anywhere can it also just be a benign growth...i worry because it seems that having a lump in the tongue is automatically indicative of oral cancer. Thanks for the reply
| | | | 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 | HPV number 16 and 18 are the ones to cause cervical cancer, anal cancer, genital warts, and penile cancer. The guardisil shot protects against strains 16 and 18 so you are in good shape. Glad you have gotten the shots. 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: 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 | Hi again. Try not to worry a tongue lesion or tumor (to me a lesion is more of an open sore or damaged looking area) necessarily always being cancer. It's not the case. My concern is leaving something for too long then finding out far too late that it is cancer. That's why I always push people to get an answer.That said do be forthcoming with your next dr. basically say, I had a biopsy a while back. The problem persists, I would like another biopsy perhaps remove the lump period so there is no need for worry. If you go on about drs not listening they will tune you out and chalk it up to some paranoia. Its gone on long enough you need an answer. 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: Feb 2013 Posts: 17 Member | OP Member Joined: Feb 2013 Posts: 17 | Thanks again for replying.. then i wouldnt describe it as a lesion id say its more like a very small lump hardly visible unless its touched and felt along with some swelling of the tongue that has remained...Cheryl your absolutely right about drs thinking its paranoia...the oral surgeon i went to which was the last doctor i consulted i told him that i had a biopsy and asked if i could have the lump removed or a second biopsy and he said if he did so he would be cutting into my tongue and that what i had didnt look like it was cancer he had many certificates on the wall and seemed quite knowledgeable in his field...Today I called a different doctors office and im going to have to pay 250-350 dollars for consultation and 325 for a fine needle biopsy procedure its ridiculous how pricey it is to have a consultation and procedure done...im going to have to wait however, in order to save up that much amount of money.... | | | | 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 Fhdez
I think that there has to come a time when you have to trust 6,7 or 8 highly trained healthcare professionals and accept that you do not have oral cancer. There are certainly cases where the doctors miss a tumour but it's not usually when the person has seen upwards of half a dozen specialists - some of whom see lots of oral cancer patients. There needs to be a point where you have to believe them and try to settle down. Keep an eye on your lesion and if changes (as in doubles in size or changes colour or looks different to other parts of your tongue), then you can take yourself back to the doctor.
Remember this: oral cancer is quite rare and extremely rare in a 23 year old who has a very limited smoking history.
Just so that you know ... a doctor describing something as a lesion is healthcare professionalspeak for anything they can see that shouldn't normally be there (an abnormality or injury). Lumps are lesions and ulcers are lesions. So are gashes, cuts and tumours. It is a pointless word for a patient and as if you hear it, ask the doctor what they mean and ask them to describe it.
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: Feb 2013 Posts: 17 Member | OP Member Joined: Feb 2013 Posts: 17 | Thanks for the reply klo i appreciate it... thats exactly how i feel, that i need to accept whatever it is they tell me which is that i have severe acid reflux...after seeing 6 ENTs 1 oral surgeon and dentist and having been told that they are absolutely positive it isnt cancer im sure i should feel that way hence one of them did say that they see about ten to 15 patients with oral cancer on a daily basis and my case was nowhere compare to what they see...However, what bothers me is that the lump remains and the ear pain along with throat pain and tooth sensibility known to be symptoms of oral cancer are present on the same side where the lump is located and the medication for the acid reflux doesnt ease or provide any significant relief to these pains. the constant feeling of something cracking or popping in my throat is weird and unexplainable and it adds to my concern and fear of having oral cancer.
I really appreciate ur advice it really helps thanks for hearing me out and taking the time to reply. fhdez | | | | 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 | Finally a Fine needle biopsy is only as good as the tissue it hits, if you do have a biopsy in the future it should be excisional. best of luck - try to move on.
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 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | I have to agree with KLO. Time to move on. You have been seen by so many Drs. Had the area biopsied , how many times? Please be reassured and move on with your life now.
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Feb 2013 Posts: 17 Member | OP Member Joined: Feb 2013 Posts: 17 | Cheryld thanks for the advice i appreciate it the only reason why i considered the fine needle biopsy is because i heard it's more precise and reliable in detecting cancer because it goes further into the skin but excisional will do as well....what bothered me about the ENT who performed it was that by looking at the lump and area of my tongue she said it wasnt cancer and went ahead and did it because i demanded it yet she said that she was going to have it done just to give me some peace of mind but that it looked non cancerous and thats from a Head and Neck ENT doctor who has 30 plus years experience yet i thought she was going to take tissue from the actual lump but she removed tissue around the lump or just above it so i dont know whether to rely on that biopsy result because of that. then again i assumed she knew what she was doing as she did tell me, "kid ive been doing this for many years youre not going to tell me what to do" so i kept quiet.
i was also wondering are the symptoms of ear pain or throat pain when it happens to be oral cancer always present like continuous or do they come and go and are more severe on certain days.?
And I will definitely try to move on Thanks | | | | 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 | They don't want to cut directly into the suspected tumor, so not to chance spreading any cancer if it is, and so they take a biopsy from the edges. If I check with Dr. Google for any one of my ailments, I'll probably come up with hundreds of suspected illnesses, and diseases. I guess you will only keep finding what you keep looking for or into that may not be there.
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
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