| | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Question,
I understand the anatomy completely of the base of the tongue. I fortunately one
Who can stick my finger all the way down to the end. My question is to all bot
Friends. Was your tumor on the actual tongue or lymphatic tissue below it? Did all of your tumor show up on ct or mri? | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I am not sure you could really touch the base of your tongue. I saw my tumor with a dentist's mirror and it was pretty far down my throat. Are you sure you aren't thinking the floor of your mouth as in under the tongue? My actual tumor was closer to being on the epiglottis.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Yes, that is where I'm talking about. I pointed down my throat and
The ent put scope up my nose and said the lymphatic tissue below base of tongue looked a little irregular. Just a little more prominent than other side. So, yours actually looked like a tumor? What where your symptoms and did it show up on CT or MRI? | | | | | 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 | Hmm. I do not think you can touch the base of your tongue. It is a long way down, deep in the throat. Your fingers would have to be at least 10 inches long.
Kris's tumour was on the right side of the BOT and had metastasised to the right tonsil and 1 lymph node. He was completely unaware of it. Only when he developed slurred speech as a result of the node pressing on his hypoglossal nerve did we know anything was amiss.
Tammy
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: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Did ct scan show the tumor? | | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | I was diagnosed BOT and there was no indication of any pain or discomfort so I never bothered looking down my throat, Lo and behold look at the nasty beast right there. It was necrotic and ulcerated and was located BOT so it is not that far down there. THE BEAST
Last edited by donfoo; 07-18-2013 01:03 AM.
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: 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 | Kris's tumour certainly did show on CT scan. As did the metastasis on the R) tonsil and lymph node.
He also had the typical ear pain that often goes with a tumour in this location.
Tammy
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | John's tumour did not show on the first CT scan. It took a quadroscopy and actual biopsy. It was "inconclusive" for a long time.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=portland72]Yes, that is where I'm talking about. I pointed down my throat and
The ent put scope up my nose and said the lymphatic tissue below base of tongue looked a little irregular. Just a little more prominent than other side. So, yours actually looked like a tumor? What where your symptoms and did it show up on CT or MRI? [/quote]
Mine probably looked more like an open sore. Check out the pictures on the main website. I had a scratchy throat for 2 or 3 winters with a slight but persistent cough. I also had developed obstructive sleep apnea which went away after treatment. Other than an annoying lump in my neck, no other symptoms.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | The base of tongue is the I/3 posterior of the tongue where lingual tonsils are atop, so it's possible, in some, to see, feel, it, if the mouth can be opened wide, tongue can be extended, have no gag reflects to tolerate. That's one area the doctor checks on a palpable exam. Most HPVSCC have no visual indication for cancer, as opposed to tobacco related cancer with ulcerizatipn, etc. I had three flex scopes, and cancer was not seen, but was on the CT, and PET, which was confirmed by a direct biopsy. The nodes were checked by FNAB before that, and confirmed metastatic cancer cells,, , so they knew it was most likely coming from the oropharynx.
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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