| | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | Went in for a regular follow-up for my neck, mentioned some increasing pain on my healing tongue, this was Monday. Tuesday was biopsy, which turned into surgery as the cancer was found. Today I am home with a tongue swollen up like a balloon, and the big word RECURRENCE hanging over my head.
Hi again.
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
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Kristen,
I am really sorry to hear about the recurrence. It is the worst news any survivor wants to hear after a check up.
Good news is it was found very soon so you have the best chance to treat it. Did the surgery yesterday remove the new tumor? Was there any initial impression of the stage and if they had good margins? Maybe that is all that needs to be done this time.
Hoping only for the best outcomes for you. 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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hi Kristen,
I can't express how sorry I am that you have a reoccurrence. I'm thinking you are reeling with emotions. As you know we are here to support you on this journey.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | 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 | Hon I would seriously ask about follow up treatment. This often happens when they cut and then don't follow up with chemo/ rads - so sorry.. Hopefully it early stages. At this point speed is important. 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: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | I will have a post-op next week, and discuss options then. If I can talk, LOL. That is why I am reading here now. I expect the docs will be aggressive. He already mentioned going back to the tumor board with my case. Seeing as my nodes are already out, I an guessing radiation will be pushed.
I was scared to come and read, because this is a very thorough site, but I know I need to research. And cry. And all that.
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
| | | | | 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 | Sorry to hear. Did they ever do a endoscope or pandendoscopy, wih biopsy, of the base of tongue, tonsil, and PET/CT scan being it's HPV positive? which type was it 16, 18, which 90% of the time is in the oropharyx or originated from there, and not the oral cavity, tongue, although the BOT can matastasuse to the anterior tongue. I agree with Cheryl regarding further treatment. Sometimes cancer is right outside the surgical margins, and not enough section wasn't removed, cancer comes back at the surgical incision sometimes, could be due to field of cancerization, usually with smoking, alcohol or other carcinigen related in the upper aerodegedtise tract can be involvef, and other reasons. Did that say it was a local regional recurrence with similar histology of the primary or a secondary or simultaneous cancer? Good luck with everything.
Last edited by PaulB; 12-04-2013 11:19 PM.
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: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | I had a scan after the first surgery, and all was clear. No other scopes, except a quick scope down the nose at one second-opinion doc. This really is my tongue, not tonsil or BOT as far as I can tell, though with my swelling it sure feels that far down! Since we just had this biopsy and surgery Tuesday, I do not have further path info, but I know he was VERY aggressive about margins this time. I want to say the HPV was 16 but I would have to check the old papers. The lymph node removal was preventative, not required. Does any of that make sense?
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
| | | | | 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 | Yes preventative node removal is very common with this cancer (likely NON HPV - oral cancer - includes oral tongue and oral mucousa, and gums) and that's a good thing. (with HPV related oropharangeal cancer and tonsillar, the tend to leave the nodes) I am assuming the recurrence is on the same side as the original tumor. Even so likelihood is they removed only the nodes on the one side. That being the case there is a possibility of it jumping the midline to the other side. If they give you rads - I would request they cook both sides. Your body tends to reorganize things when you remove parts. So it the fluid may drain through these nodes as well. You have scads of nodes in your neck... they only removed a portion. best of luck... and hugs...
Last edited by Cheryld; 12-05-2013 02:55 PM.
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: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2013 Posts: 346 Likes: 3 | It really was HPV+. They just did not know what to do next, because it was borderline needing more treatment. Doctors hate iffy. So they took out like 38 lymph nodes. Was just getting used to that. Sigh.
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
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Kristen,
The direction and advice I received and adopted was to be aggressive the first time. I got hit with induction TPF chemo 3x for nine weeks, then rads-chemo for another 7 weeks. Brutal as hell but I have zero second guessing if something more could have been done the first go around.
In your case it seems you have not done any rads so if you adopt the aggressive stance then rads and chemo may be recommended.
I'd think everyone would agree to go in with all guns blazing as you want to do everything possible to stop it dead this time.
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 | | |
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