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#133667 04-30-2011 09:56 PM
Joined: Apr 2011
Posts: 9
Judy L Offline OP
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Joined: Apr 2011
Posts: 9
Hi,
I wanted to introduce myself. I am 53, and I am currently dealing with my 3rd bout of a low grade mucoepidermoid carcinoma. In 1997 I had a single lymph node removed, but no primary was ever found. In 2009, the (possible) primary reared its head at base of tongue, also lymph nodes both sides. I had radiation/chemo in 2009, got through that fairly well and fully recovered. Now a recent scan shows activity in lymph nodes, and activity in tongue. I am facing a partial tongue resection and neck dissection, both sides. I am interested in any info on tongue resection and recovery, and also on the robotic surgery option.

Any guidance appreciated.


1997 MEC low grade
1 neck node removed--no primary,
stopped monitoring in 2003
(BIG mistake!)
2009 BOT, bilateral lymph
IMRT+Cispl
2011 recurrence, hemi-glossectomy,
margins clear, reclassified hi-grade
2012 recurrence, total G +
laryngectomy,
2013 Mets, now in chemo
Judy L #133680 05-01-2011 02:42 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Judy welcome to OCF. Im sorry you have been thru so much. Ive been thru recurrences but have not had OC on my tongue. Im sure you will soon hear from some members who have undergone similar surgeries. Best wishes!

Here are some links to the best hospitals and top cancer centers.

http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals


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
Judy L #133697 05-01-2011 03:40 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi I had a hemiglossectomy, neck dissection, and am just finishing up rads, and chemo if you have any questions feel free. This cancer is likely new is it scc?

Take care...


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
Cheryld #133867 05-04-2011 09:54 PM
Joined: Apr 2011
Posts: 9
Judy L Offline OP
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Joined: Apr 2011
Posts: 9
Hi--no, muco-epidermoid, low grade. I had 2 excellent years of no problems after chemo/rad, so that was good. Never had any major surgery. Where did you go for treatment? Can you tell me more about it?
JudyL


1997 MEC low grade
1 neck node removed--no primary,
stopped monitoring in 2003
(BIG mistake!)
2009 BOT, bilateral lymph
IMRT+Cispl
2011 recurrence, hemi-glossectomy,
margins clear, reclassified hi-grade
2012 recurrence, total G +
laryngectomy,
2013 Mets, now in chemo
ChristineB #133868 05-04-2011 09:55 PM
Joined: Apr 2011
Posts: 9
Judy L Offline OP
Member
OP Offline
Member

Joined: Apr 2011
Posts: 9
Thanks Christine.


1997 MEC low grade
1 neck node removed--no primary,
stopped monitoring in 2003
(BIG mistake!)
2009 BOT, bilateral lymph
IMRT+Cispl
2011 recurrence, hemi-glossectomy,
margins clear, reclassified hi-grade
2012 recurrence, total G +
laryngectomy,
2013 Mets, now in chemo
Judy L #133892 05-05-2011 07:52 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I'm Canadian so I was treated at princess margaret hospital in Toronto by a dr. Johnathan Irish. He is awesome. The hospital is one of the top 5 in the world so I'm told, he did a great job. It was a 10 hour surgery -12 hour surgery and I was rebuilt by a terrific micro surgeon.


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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