| | Joined: Jan 2014 Posts: 8 "OCF Down Under" Member | OP  "OCF Down Under" Member
Joined: Jan 2014 Posts: 8 | Hello my name is tabi and am in the process of finding out what is wrong with me.. For about a year and a half I have had occasional problems swallowing, the in the last month I've had pain in my throat and ear aches, so I went to my dr on the 23rd dec and she wanted me to get a ct scan and be referred to an ENT. So I got the scan and couldn't make an appointment with the ENT till the 6th jan because he was on holidays. The results of the ct scan said "there is a considerable nodular enlargement of the soft tissues on the posterior aspect of the tongue base virtually filling the valleculae on both sides. The nature of this finding is uncertain. Direct inspection of the area and possible biopsy is suggested." So I finally got into the ENT on the 7th and he looked down my throat with a fibre optic scope, and said my voice box was red and told me it could be one of four things, a lingual thyroid, a lingual tonsil, inflammation from reflux or lymphoma. He then told me to get some more tests, blood, barium swallow and a thyroid scan. Because I'm on thyroid meds I had to wait 6 weeks to get the scan so I'm booked in for that on feb 14th. But I had the barium swallow and it's results said, " mass lesion base of tongue. Given the position, it likely reflects an ectopic thyroid but included in the differential diagnoses is a complex suprahyoid thyroglossal duct cyst, dermois or epidermis, squamous cell carcinoma of the lingual tonsil and less likely lymphoma." So I don't know what it could be I've had my main thyroid removed when I was 17. So what they are suggesting is that it is a lingual thyroid, but I need to wait for the scan results... Is it a good sign if my bloods are ok? He did a full blood count and they came back good.. I'm really worried its something and I hate waiting because if it is we could be treating it. Has anyone had anything similar ?
Last edited by tabi; 01-19-2014 09:34 PM.
Ct scan showed lesion on BOT 30/12/13, barium swallow showed mass on BOT 10/1/14, thyroid scan ruled out lingual thyroid 14/2/14, biopsy on BOT 20/2/14, biopsy all clear diagnosed lingual tonsil lymphoid hytrophy. Did not test for HPV. 29/4/14 CT scan on chest and neck, lesion or mass on BOT not changed. 2 nodes 7mm noticed on left neck, 1 tiny node 3mm on chest was noted.
| | | | | 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 | You mention swollen node(s). Why didn't the ENT do a FNA (fine needle aspiration)? Swollen node(s)and enlarged BOT = typical presentation for HPV+ SCC.
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: 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 sorry but even a blood test will not pick up on oral cancer.
Im wondering if the ENT you saw specializes in oral cancer???? If not then find another ENT who does.
It can be a long road to getting this diagnosed since your issue is not visible. Best to get a biopsy done to know for certain what is going on.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Good morning Tabi - welcome to the family. You have a lot going on right now, lots of possibilities with some of them being pretty scary (cancer). Of course you want it to not be cancer, we all want that too.
While it's always a good sign if your blood work comes back good; cancer is not diagnosed with blood work, it is diagnosed via biopsy and pathology work done in the lab.
I expect what you are most afraid of is it's cancer, the same thing we were all most afraid of. You are looking for something good to hang on too (good blood work) and hoping that equates to no cancer.
I know it's hard, but the best thing for you to do right now is to wait patiently until the docs have all their answers. If it is cancer, then we will cross that bridge when we get too it. Everyone in this family either has it, had it or is caregiver to someone who does. We know what goes on in your head because it went on in our head too, so we know how to help you get through it with the least psychological damage.
Of course we want it to not be cancer. But, if it is, we will be here for you.
So, take a deep breath and relax. Go start that really good book you've been meaning to start. Keep your mind occupied with pleasant, positive things. Do NOT sit there and obsess over what it might be, or might not be, or what will I do if it is. That's a one way trip down the road in the wrong direction. It's much better right now to just sit there on the side of the road and wait for the doctors reports. Then you will know which direction to go.
Hang in there, you will do just fine.
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: 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 Tabi... You need to push... You've waited long enough. You also need to see an ENT who is very familiar with base of tongue cancer (oral cancer period) It is very possible this is thyroid related, however depending on your age it could also be HPV + BOT cancer - ear pain, difficulty swallowing, nodal involvement and a lesion... You've waited Long enough. Call the place where you are booked to have the scan tell them you are very concerned (terrified) ask to be put on a cancellation list. Then call your ENT or or even ask your GP to refer to to another ENT - who can get you in sooner - the lesion needs to be biopsied.. Scan or no scan. Hugs - it's probably nothing but you need to hear that sooner than later.
Last edited by Cheryld; 01-20-2014 08:16 AM.
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 2014 Posts: 8 "OCF Down Under" Member | | OP "OCF Down Under" Member
Joined: Jan 2014 Posts: 8 | Thanks guys for your responses, I'm in country Australia and have fairly limited services, but may need to go to a major city... No I don't have any lymph nodes enlarged, well not yet anyway. The ENT doesn't want to biopsy the mass in case it's a thyroid ( I don't know why) if it is a thyroid I will be asking to see a endocrinologist. But I have to wait for the scan because the dye from the ct can give a false positive reading. I am concerned the it may be HPV as I was a big drinker when I was younger but haven't drank in 16 years I'm 44 now, I've never smoked but my father did and died from lung cancer, plus I enjoyed oral  , I did have HPV on my cervix many many years ago. I spoke with my GP yesterday and she was fairly relaxed and doesn't think it's any concern.
Last edited by tabi; 01-20-2014 01:17 PM.
Ct scan showed lesion on BOT 30/12/13, barium swallow showed mass on BOT 10/1/14, thyroid scan ruled out lingual thyroid 14/2/14, biopsy on BOT 20/2/14, biopsy all clear diagnosed lingual tonsil lymphoid hytrophy. Did not test for HPV. 29/4/14 CT scan on chest and neck, lesion or mass on BOT not changed. 2 nodes 7mm noticed on left neck, 1 tiny node 3mm on chest was noted.
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi Tabi,
Welcome to OCF, great place to get first hand info on oral cancer. It does seem like you are getting pushed around a bit. If you do not feel like you are getting firm diagnosis from doctors you can trust, get to a metro area that has more specialists. Even if the local docs make a diagnosis, I would line up a second opinion from a facility in a big city with a good reputation.
If it turns out to be cancerous, you are going to have to get used to getting services from a big place any way as that is where the big machines are located.
Good luck,
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: 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 | HPV and drinking are not directly related nor are cervical HPV and oral HPV.
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: Jan 2014 Posts: 8 "OCF Down Under" Member | | OP "OCF Down Under" Member
Joined: Jan 2014 Posts: 8 |
Ct scan showed lesion on BOT 30/12/13, barium swallow showed mass on BOT 10/1/14, thyroid scan ruled out lingual thyroid 14/2/14, biopsy on BOT 20/2/14, biopsy all clear diagnosed lingual tonsil lymphoid hytrophy. Did not test for HPV. 29/4/14 CT scan on chest and neck, lesion or mass on BOT not changed. 2 nodes 7mm noticed on left neck, 1 tiny node 3mm on chest was noted.
| | | | | Joined: Jan 2014 Posts: 8 "OCF Down Under" Member | | OP "OCF Down Under" Member
Joined: Jan 2014 Posts: 8 | Well I don't have a lingual thyroid, so I am having my tongue biopsied tomorrow, the ent thinks it isn't anything to worry about  I am not so sure. I should get my results back on Monday.
Ct scan showed lesion on BOT 30/12/13, barium swallow showed mass on BOT 10/1/14, thyroid scan ruled out lingual thyroid 14/2/14, biopsy on BOT 20/2/14, biopsy all clear diagnosed lingual tonsil lymphoid hytrophy. Did not test for HPV. 29/4/14 CT scan on chest and neck, lesion or mass on BOT not changed. 2 nodes 7mm noticed on left neck, 1 tiny node 3mm on chest was noted.
| | |
| Forums23 Topics18,170 Posts196,933 Members13,105 | | Most Online458
Jan 16th, 2020 | | |
|
