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nicki74 Offline OP
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hi i am reading a few posts on here with regards to a jaw split.. does anyone know why the doctor would do replace portion of jaw and replace with plate and not just do the jaw split? also our ENT said that "if" he has to remove base of tongue that the voicebox would HAVE to come out because food would just go right down and he could choke, anyone ever heard of this?! so confused... thank you! this site has absolutely put my mind somewhat at ease.. gives me hope.. up all night? of course.. still scared for my dad.. thanks again!


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
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I had just the jaw split but others here have had plates. I assume it was because of cancer in the jaw itself but really don't know. My surgeon never mentioned it as even a possibility.
I'm totally confused about the comment on taking out the voice box as I had almost the entire base of my tongue taken out right down to the hyboid bone, yet my voice box is intact.
As DrBrooks, a new poster here has written, it's a very big and bad deal to lose your voicebox. In fact, I agreed to having a second round of radiation over and above the maximum to try and prevent a third time for the cancer because the surgeons said if it came back it would probably spread to the voicebox and I did not want to lose that too,
How I wish that "food would just go right down" if you kept your voicebox after BOT surgery - it certainly doesn't for me. I've failed 3 modified barium swallow test (MBS) and use a feeding tube because I can no longer swallow.
Again, this just doesn't sound right to me.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Nov 2010
Posts: 128
nicki74 Offline OP
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thank you so much for your response! we are so confused about the doctor's statement as well.. up until now i was very impressed with him.. another thing that caught us off guard was that he told us that if he did have to take the voicebox, he would wake my DAD UP and ask him?! what?!!!! he said as far as he could see he can save the base of tongue and voicebox, but he wont know for sure until he goes in there.. as of right now he knows he has to take bottom jaw, about 1/3 of tongue (front) because that is where the cancer is.. its also on floor of mouth.. so if they have to take base of tongue, is that the whole tongue? sorry if im babbling.. thank you again!


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
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Posts: 128
nicki74 Offline OP
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oh and the ENT also stated that because my dad already did the 35 treatments of radiation that this would be no longer be an option.. the only option for a chance at cure is the surgery..


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
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I have had my jaw replaced with flap taken from my rt.lower leg. Flap failed and was replaced with flap from left thigh. I also had a portion of my tongue removed and the floor of the mouth rebuilt. Everybody is so different that it's hard to give you definite answers to some of the questions but some of the info you are getting does seem to be very confusing. It certainly appears you need a lot more clarification from the doctors and a 2nd opinion is also a good idea.
Best of luck.
Pat


Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth
Lower teeth& bone removed
Port& Peg
Cisplatin x3; Rad 35 - ended 12/21/09
Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
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I agree with Pat, go for at the least a 2nd opinion. This is a huge surgery and it cant hurt to have more than one person's take on this.


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
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nicki

Relax and take a deep breath. With the extra information of your last two posts, the surgeon's statements make more sense.
If the cancer has come back and is throughout the tongue both the front and the base, then it's possible it would have spread to the voicebox. Although the surgeon could have been clearer, what I hear is that at this point he does not know just how invasive the cancer is and he won't know until he opens your Dad up and takes a look. This is normal, unfortunately. IMO It's actually a good sign that the surgeon is not asking your Dad to agree right now to have the voice box taken out but instead the surgeon doesn't think this is very probable. But I never heard of "waking up" a patient in the middle of a BOT operation. Hard to believe your Dad would even be capable of meaningful consent.
Also, the standard medical care when a tongue cancer comes back after radiation and chemo is indeed Surgery. It's also true that this surgical option does hold a chance for a "cure". While I did have more than the 35 radiation treatments, it was only after getting the surgery and then getting a bad pathology report from the tumor they took out.
My advice is to relax, WRITE down your questions, then hand them to your Dad to ask the surgeon BEFORE the surgery, and then at the post op check off the answers as to what was done.
My ENT surgeon was very patient with my wife giving her my typed up questions and even writing in answers. Of course some answers were "hard to tell at this point"
There is life after recurrence and salvage surgery
Keep the faith
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Nov 2010
Posts: 33
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Mike's Dr. told me the same thing. When she came out of the surgery, she told me how extensive the cancer is and asked me if I wanted her to remove the voice box. She said he would never talk again, but it would make swallowing easier. I told her that I wasn't comfortable making that decision for him and she said that she could wake him up and ask him. Once she told me that it wouldn't get all of the cancer out then I told her not to doit.

None of it makes any sense to me either but funny how we were told the same thing


CG of Mike, 43 y/o. July 2009 with Stage 4a SCC on Tonsil., Nov.2010 Recurrence on Tonsil and Base of Tongue
Surgery no clear margins. Very Invasive.Palliative chemo
7/2011: Cancer not responding to chemo, new tumor on larynx and a few other places in oropharynx
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Man this hits home for me. I am waiting to have my complete lower jawbone removed. No mention of the voice box in any conversations as of yet. I looked in my mouth the other nite when I was brushing my partial tongue and mouth. Damn, it's ugly. I'll sure keep reading this post and learning from you all. No flesh in there on the bone but a lot of dead bare bone showing. Looks like a skeleton you would see on the desert floor. Only no buzzards yet. LOL


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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