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My name is Vincent, I'm French from Paris, and I'm 63. I had 2 mouth cancers, with surgery, the lost of two jaws and the palate.
My surgon is now proposing me reconstruction surgery, including a new jaw from a bone of my leg.
Had one of you been in the same situation? If you accepted the reconstruction, what was the result, including long term pain and tireness, .... And if you refused, why?
Looking forward to reading your testimonies

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Welcome to OCF, Vincent! It sounds like you have been thru so much already. I will do my best to help you. Ive lost half of my lower jaw to oral cancer.

First, Im wondering what type of treatments you have had. Did you have radiation or were you treated with surgery alone? Do you mean you have had cancer twice or was it in 2 seperate locations? My reply will be vastly different depending on if you have had radiation or not.

Any long term tiredness could be your thyroid not functioning properly or low testosterone levels. These are common issues many OC patients have after going thru rads.

Pain associated with this type of surgery can be a long term problem. Its a major surgery that can affect nerves causing extreme pain and discomfort.

When was your cancer? A brief timeline is very helpful in helping us to give you the best possible answers.

Im sending you a private message (PM) with an important link. Please take a few minutes to review the PM and link.

Thank you!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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sorry to hear about your ordeal.ive had the reconstruction surgery to replace part of my lower jaw.i had a bone and skin graft from my leg.im thankful that i was lucky enough to have been a candidate for this surgery.
my jaw feels a little different after surgery.i only had pain for a couple weeks.my leg has taken 2 months to heal.there is nerve tingling at the top of my foot that comes and goes.how long will it stay......i dont know.
but the bottom line is that im alive. my thought are with you.

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Answering Christine,
I've had 2 cancers at th same place. The second time (8 years later), it was hidden in the middle of burned cells from radiation treatment.
First cancer in 2005, second one in 2013. My palate was reconstructed in 2013.
I saw the surgeon in february. He considers that he can relly do something for me, as far as eating and talking are concerned. He also told me he never propose such surgery of my age (62), but because I'm physicaly and moraly very well, he consider I will gain a lot if it works (5% of failure).
So I decided to accept, and I should have that surgery in August.
Is it possible to see photos of your face before and after the reconstruction?
Thanks for your help


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Im sorry Vincent but I do not post many photos. I had complications the majority of similar patients do not encounter. Theres an "after" photo of me under the key staff section of the main OCF site. Im the last one, scroll all the way thru to the bottom. Just remember... I had complications which most patients do NOT have.

Key Staff of OCF


Im very glad you will proceed and get treated. I know a major surgery can be frightening. The one concern I have is why must you wait until August? Cancer should be eliminated as quickly as possible, August is 5 months away. Here in the US a surgery like what you described is normally preformed 4-6 weeks after all testing and the initial consult.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Posts: 3
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Posts: 3
Christine
You didn't understand me.I hav no cancer any more and. I'm waiting for reconstruction surgery. I asked the surgeon to wait until sommer in order not to disturb my life too much



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Hello

@Vincent Perrot: I am facing the similar situation as you. Dr is suggesting I get a JAW Surgery with leg bone to use to create a new JAw. I hope you do not mind that I jump in the POST/conversation with you. So that I can read some of the advice. I totally understand your thoghts on wanting to wait a bit so that you can enjoy the summer. I was thinking same. But then I say...if Iwait, when will this ever get fixed lol. Imm new to this site so Im learning how to navigagte. But as I logged on I saw an article and another person gave this surgery another "TITLE" she said there would be more info if we Use that title in the "SUBLECT" somethin mandibular*** I must go look again. When I find It I will be back on to post it


Thanks everyone!! HAve a fabulous Day


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
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Elainy,

You may be referring to a Mandibulectomy, which I had (Segmental Mandibulectomy with a Fibular Free Flap), and there are a number of posts about this. You can also search under Fibular Free Flap Reconstruction. If you make a separate post, you may get more responses.

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






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Posts: 16
Thankyou so much.

Nevermind Paul you do not have to respond to my questions below. I found ur older post that describes your journey. Im new to the site so im learning how to get around. Lol found YA...




Last edited by ChristineB; 04-11-2017 11:49 AM.

SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research

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