| | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | [quote=portland72]Did ct scan show the tumor? [/quote]
My husband had no symptoms other than the enlarged lymph node in his neck. His tumor did show up on the CT Scan.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Tamvock,
Did you have reconstruction after glossectomy? If so, how is that going? | | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Kevin's tumor was only found, as far as seeing or physically touching, in surgery to remove it. It showed up on the PET, so the ENT knew where to look. Even with Kevin asleep he still couldn't see it. When he felt it, it was concave in nature. He had to cut by feel. Did not show up on the CT.
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jul 2013 Posts: 17 Member | | Member
Joined: Jul 2013 Posts: 17 | My tumor was on the left side of the back of my tongue..I didn't see it but it felt like an open sore.
DX-JUNE 22, 2012
STAGE..III
HNC--TONGUE
HPV--QUESTIONABLE
SURGERY...JULY 17TH, 2012
40% OF TONGUE REMOVED
FREE FLAP FROM MY LEFT FORE ARM (DIDN'T WORK)
RND
RT
XERSOTOMIA
VERY BLESSED
| | | | | 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 | Hi Portland,
Kris did have reconstruction. They took a flap from his abdomen to reconstruct the tongue . However this just fills the space where the tongue sits in his mouth. It is all sutured down and has no movement or taste.
However he is able to swallow all his nutrition, though it is just liquid. He also seems to have a reasonable amount of taste. There are taste buds throughout the mouth and nose.
Remember that Kris had a complete total glossectomy so he has no part of his original tongue left. This is not a common procedure. Most BOT tumours are cured by chemo/radiation treatment.
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 | How long was it inconclusive? Did they find or see it during the scope?
Where did he think it was? Could he point to the pain? | | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Tamvonk,
How large was Kris initial tumor? I'm glad he seems to be doing better. | | | | | 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 had a large T4 tumour. He was initially treated with chemo and radiation. His first post treatment PET was clear but he had a local recurrence 10 months after finishing treatment . The huge surgery he then had was of a curative intent. Remember, very very few follow this disease course.
Kris is doing very well, surviving very well and living his life.
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 | Will chemoradiation not cure tongue cancer?? | | | | | 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 | Cancer is not always cured by surgery, radiation, chemoradiation, other factors are involved. Was your symptom diagnosed as cancer by a biopsy?
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
| | |
| Forums23 Topics18,235 Posts197,106 Members13,295 | | Most Online1,788
Jan 23rd, 2025 | | |
|
