| | 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 there - please get your self to a CCC - that is primary. I know it's terrifying. - but you can get through this. I'm willing to bet your cancer is not HPV+ - the first line of defense against this cancer is surgery - followed up by possible rads and chemo. Push to get answers ASAP. Hugs!
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: 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 | Sorry to hear about your confirmed diagnosis. It will be just as confusing from now until treatment, which treatment depends on the TNM grading, tumor, nodes, metstateses, and also tumor thickness. For T-1, T-2 with N0, meaning no nodal involvement, it's surgery of radiation as the first line of treatment. You may or should have a PET/CT, if not already done, which will see if any other areas are involved.
You can, and should start keeping your own file of every test, procedure done. It's useful for information, will save money to get now, and need for other doctors. Even in the same facility, they may not automatically send tests reports to other dictors, and if you go elsewhere for consultation they would need them too. Right now you can get the surgical, and pathology report. Not sure if you had CT scan done, but you can get the report, and disc copy too.
You will me sent to see the ENT, Radiation Oncologist, and possibly others in the multidisciplinary team, at a CCC, as Cheyrl mentioned, if you go to one, and is recommended you do.
Good luck. If you have any questions, ask your doctors, and further information here. You can familiarize yourself with the many terms, treatments with oral, oropharyngeal cancer here at the opening page.
Good luck.
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
| | | | | 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 | Yes you need to get to a CCC and also find out exactly what your Staging is. What treatment options have been discussed with oyu so far?
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: Jul 2013 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2013 Posts: 114 | Kristen,
Which hospital did you use? UAB? | | | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | My surgery was in a local surgery center in Huntsville, as it was supposed to be minor. But I am going to UAB for further opinions. A gentleman in my church has had several recurrences and he says UAB is very good. Coincidentally, he also sees my local surgeon's partner.
Hope that helps some!
Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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