| | Joined: Jun 2013 Posts: 13 Member | OP  Member
Joined: Jun 2013 Posts: 13 | Jeezzz... o.k was dx in June with scc of tongue, i have had 4 surgeries and the last was to remove 3 1/2 cm , came back cancer free, that surgery was on 11/19/13. A couple weeks ago I felt the same stingy feeling, and there is a white spot, of course I am thinking it's possibly just scarring from my four other surgeries, but I am freaking out because it is the same looking and the same feeling. I am going to surgeon in morning, here is my major issue. My CCC blows me off every time i go to them, the dr has said all (4) times that it does not appear to be cancer again and since the CT SCAN, and PET scan were negative he is not concerned..... am i just freaking out? This last surgery was pretty bad, and i refuse to go to that dr again, so i am going to see my ENT surgeon who has been the one who actually done the surgeries, I am just so confused, guess i should see what he thinks i know, but i am thinking it isn't looking good.
Last edited by ChristineB; 01-16-2014 08:55 PM. Reason: removed name
Tongue Lesion 7+ months,CT -, Biopsy +SCC 6/25/13 (didn't ask kind,size,stage...scared/shock)DX fond out 7/3/13, excision of tongue clear margins 7/9/13 spot found 8/13 excsision with frozen sections was SCC had clear margins,10/25 3 more spots 11/19/13 tongue and floor of mouth excision with frozen section of 3 cm
Jenn P
| | | | | 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 | NO YOU ARE NOT FREAKING OUT. You need to see someone else... making a mistake once... is okay. (particularly if you are not part of the demographic who is normally associated with Oral Cancer (in the past - old men (particularly) - heavy smokers and drinkers) HPV is generally NOT a cause of oral tongue cancer. It's not unheard of but unlikely. So as I said - making a mistake once is marginally okay- BUT not listening to you and repeated making the same mistake (hello??? proven wrong once is usually a heads up to not rule anything out the next time...) is just bad medicine. If you want to stay at that hospital then do so... but find out who the top ENT is there and ask to be referred to him/her. This person is playing with your life and not taking you seriously can be deadly. Also a PET and CT can turn up negative when the cancer is microscopic. Cancer can seed to the nodes and not be seen on a scan until it is a reasonable size. I've had a 3mm node highlight. But I've also had a 1.5 cm node (that was verified cancer) not. My dr. (ENT) who is amazing never speaks in absolutes. His experience has taught him that not everyone is textbook. 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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | You have to have confidence and trust in your doctors. If for any reason the current doctors do not allow you to be fully at comfort that they are fully capable of managing your health it is time to change now. Going through this experience is tough enough. It is only made more difficult when you are not able to trust your doctors.
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 | Im so sorry you are upset .... who wouldnt be? If you are not satisfied with your current treatment center, try getting a second (or even third or fourth) opinion at another top notch treatment facility. If you are not comfortable then you will always be worrying about "what if". This whole thing is already hard enough and to have a medical team who isnt as supportive as they could be sure makes it harder.
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  | | |
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