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Hello Nocam, I am pleased that you have not completely discounted surgery. Of course, said surgery would depend entirely on where your cancer is and extends to.
Kris used the speakit app on his iPad for communication for the first 8 months postop.
He now has a TEP ( trains oesophageal puncture ) prosthesis. In essence this is a 1 way valve that sits between the trachea and the oesophagus. The user blocks the tracheal hole on the neck and breathes out through the valve and sound is made. This has made a huge difference. Of course, not having a tongue does make speech more difficult, but, I understand most of what he says. Most of the time his speech is relatively clear. Maybe the fact that I live with him enables me to understand better than others. But it's early days yet. Otherwise Kris is doing great. He goes to the gym 3 days a week, weight is stable, he swallows all his nutrition and he is taking over the yard chores again. ( though I do a neater job ) Life is good, different, but good.
Don't let the thought of this type of surgery not be an option if it will be a lifesaver.
I sincerely wish that you do quickly find the answers you are looking for, whatever that may be,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Posts: 1,024
"OCF Kiwi Down Under"
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Nocam
Should you have your tongue removed they would use a flap. This is just to fill the space in your mouth where the tongue used to sit. It actually looks realistic.. Kris's flap was taken from his abdomen.
I have no idea what positive closure is.
Guess all depends on what type of surgery is proposed .
Thinking of you,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jul 2012
Posts: 3,267
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The two places that do IORT in NYC are Memorial Sloan Kettering, and Beth Israel. I went to Beth Israel since MSKCC would not meet with me...Top cancer centers choose you, you don't choose them, and can deny treating, meeting with you, actually any doctor can for that matter, and some don't like treating you when someone else did, so if any say sorry, we can't treat you, there are always others. Anyway, I was very happy with my doctor at BI who pioneered this procedure at MSKCC, top in the country, and headed their radiation program at MSKCC, and all the doctors in the H&N surgery team there are top doctors from MSKCC and MT. Sinai anyway. I also believe Stanford, MD Anderson, Mayo Clinic, USC, and may others now that a portable machine can be used. If they do IORT they most likely do Brachytherapy too, which is another option.

I heard of a similar Intraoperative treatment, done with Gamma Knife, called Intrabeam IORT, but most are for breast cancer I seen, but someone on another blog was getting it in Indiana for H&N cancer.

I'm fine, no real limitations, but this was done on my neck, with a pec flap, so is different than BOT, but they do that also with IORT, and Brachytherapy.


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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"OCF Canuck"
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Sloan is a top cancer center - I would talk to them... Have you talked to md Anderson? They are apparently one of best places for H&N ca in the country. I live in Toronto and was treated at pmh - a world renowned facility - they train drs internationally. I was told that other than pmh - internationally speaking - medical students apply to md Anderson as they are also cutting edge. Best of luck.


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
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I like to go to US News also to see who the best hospitals are, and see where they rank in the nation, in each category. A place that's ranks high in cancer lets say, may not be as high in ENT, or other specialties, but if they are in the top 50 for any specialty out of 7000 hospitals, they are very good anyway, and especially those on the "Honor Roll" being in the top 50 for 16 or more specialties. Thankfully I live where I have many to choose from.

Surprisngly, MSKCC is number 2 for cancer, but ranks 39 now in ENT, and one of the reasons I went to Mt. Sinai originally in 2009, which is now #11 in ENT. Md Anderson is #1 in cancer and #5 in ENT. John Hopkins is #1 for ENT, but there are other factoirs to consider, but this is one listing, but an important one many go by, including the hospitals bragging rights.

Then again, I chose to go where a top doctor was I looked into for my last treatmant, even if it wwasnt a top ranked hospital.

http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

http://health.usnews.com/best-hospitals/rankings/cancer


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: Jul 2012
Posts: 61
nocam Offline OP
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Posts: 61
Tamvonk
In aday or so I am goingto tell a little more of what I know about "positive closure". I only call it that because that is what braziliangirl called it. Thre flap seems to be well known for many talk about it. But no one says anything about positive closure and I am surprised, I know Charm is famililiar with it for he posted a link to more information about it. Braziliangirl had this positive closure technique done and I hope she comes back to tellmore about it for it seems no one else has gone through this procedure.

Does your husband eat by mouth or tube?


PaulB

Thanks for the info about Sloan Kettering. I am surprised that they pick you instead of you picking them so I guess I am going to havew a problem. It seems surgery is my only option. I may not deserve it or maybe can't afford it butif it must be done then it is my preference to have it done by the best in the world. Since I couldn't even get an appointment at MD Anderson Sloan Kettering is my choice. If they are #39 in ENT thenI hope being #2 for cancer means #2 for tongue cancer also and ENT dosen't matter.

My ENT says protocal is the same everywhere as to suggest it does not matter where you go. I can't accept that. Protocalmight be the same but those performing protocal can't all be equally capable.









2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jun 2007
Posts: 10,502
Likes: 1
Administrator, Director of Patient Support Services
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You are absolutely correct.... It really does make a big difference where you are treated. There have been studies to prove this. Any doctor who says it doesnt matter may not be up to date with their continuing education. They also may work at a smaller center where they feel they are just as good as the big guys.

Where you are treated impacts the outcome

Last edited by ChristineB; 01-28-2013 06:21 AM.

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
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Posts: 1,024
Hello Nocam,
Kris takes all his nutrition and all his medication by mouth.
He has not used his peg for nutrition since about 6 weeks postop.
However he only does liquids. The SLT says the fact that he can and does swallow pills means he can swallow solids, or at least thicker fluids. He just seems to have a mental block and won't even try.
He still has the PEG and is not yet ready for it to be removed. His reoccurrence was shortly after his first PEG was removed so again another mental thing.
What is the surgical option you are being offered.
Please don't take too much more time before proceeding.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
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Joined: Jan 2013
Posts: 1,291
FYI - If you want to read the actual study, here is a link. I've not read it yet but very interested to take a look at how they assembled the comparisons and if they did any control arm testing. It does not seem like that and I find 20% really a large difference. Down in there I suspect are places where they need to even things out.
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: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
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Posts: 618
Nocam,

If you’re talking about surgery, Sloan is right up there with the best. My doctor at U of M referred me to Sloan as well as the doctors at MD Anderson if I was going to pursue a surgical solution. Both said Sloan was known for their surgical skills in H & N cancers.

I was told there was no surgical option for me by U of M but they did say that if there was a possibility, Sloan would be the place to find it. MD Anderson said the same thing. I did go to Sloan to find out and was told by them that even they would not try surgery thus my choice of Cyberknife.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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