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Hi Karen, Can I ask why you had to have your jaw replaced? Thanks, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Hi Margaret David and Pete

Thanks for sharing all that info with me.

David, I will have to pass on getting you to fix my current problem though, my Health Insurance won't cover the airline flight over to your part of the world so I will stick with the surgeon that I have!!!!


Hi Carol -

I had nearly all my lower jaw (mandible) replaced because of the damaage that the radiotherapy caused. (Radionecrosis of mandible and tongue flap tie).

I'm really in two minds about Thursdays appointment - one minute I want it to be here now but I'm getting a little stressed about what he is going to have to do, as the screw is holding one of the small plates down - so once the screw is taken out what will happen to that plate.... one question leads to another and so on.

Another hurdle to jump...........

Karen





Last edited by Karen Rose; 09-08-2008 06:20 PM.

46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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David, this is the primary set I have with the most bits -- Some of the workmanship is not good, but in general it will do.

http://www.northerntool.com/webapp/..._200317931_200317931&issearch=331792



Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Hi Karen,

Maybe the bone and plate are stable and the screw is not necessary at this point in the game. I would definitely ask the Doctor. You would think the screw could be flush with the plate. I wonder if pilot holes are used? Do you think the screw backed out? I'm sure the Doctor has seen this before. Good Luck...You'll be fine.


Hey David...

I thought I had every screwdriver possible to mankind..Then one day I ran into a square screw...Maybe they came out with a new allen wrench design...


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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Enough about screws and bits since her insurance won't fly me over!!


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.
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Hi Karen, thanks for your answer. I had tongue cancer in 2002, then a second primary in my soft palate November 2007. They had to split my jaw to get to that one.
Since the second surgery in 2007, I have had infections that just will not go away, one is currently in a tooth, had a root canal but still abscessed. My doctor doesn't want to pull it because I had radiation and he mentioned me losing part of my jaw, that is why I asked you the question. Take Care and I hope everything goes well for you....Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Anyone else out there with stubborn infections after surgery? Thanks, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Not good news .. it isn't a screw showing it is actually one of the metal plates that is screwed in that I have around the bottom of my jaw. The radiotherapy had zapped me so much and must of continued to do its thing to my chin and neck area.

I met with the Maxillofacial surgeon this morning and the plastic surgeon this afternoon. This is actually a job for the Plastic Surgeon. I have had an xray and will be having a CT scan early next week. It has been a very upsetting and busy day.

Unfortunately I have to now wait 2 weeks for the Plastic surgeon because he is off on leave for 2 weeks from tomorrow. I just know that the waiting is going to be so stressful - it always is.

Alot then depends on what the xray and scans show. If the bone has mended ok and everything looks good he will be able to take out that plate and hopefully the skin will then heal over that area, but the skin is so tight and there is hardly any skin for him to be able to join it back together so he looked a bit concerned at that... Not very comforting that is for sure.

And, if the bone is not good, well that is another story which would involve another BIG operation.

All of my ongoing complications have stemmed from the radiotherapy, but as the surgeon said "It sure can cause so much pain and misery but it saves lives"


Karen

Last edited by Karen Rose; 09-11-2008 01:48 AM.

46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Posts: 8,311
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Karen,

I know the waiting is horrible. We all do. I wish I could snap my fingers and the 2 weeks would be gone. I hope that all the news will be good from now on.


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.
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Jeez Karen, talk about adding insult to injury! That sounds lousy all around.

I hope the next two weeks just fly by for you.

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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