| | Joined: Aug 2013 Posts: 4 Member | OP  Member
Joined: Aug 2013 Posts: 4 | Hello! On 8/6, I had excisional biopsy on what was thought to be benign cyst of right paralingual sulcus (??). Pathology report showed mucoepidermoid carcinoma what I understand to be salivary gland cancer.
Met with Head and Neck Cancer Specialist at UT Southwestern in Dallas yesterday. Right away, Dr started recommending some really aggressive sounding surgery including removal of jaw bone basically because pathology showed a negative margin. Also meeting with Radiation Oncologist next week to get his take.
Really confused. Are there other tests to indicate if cancer is still present? Had CT Scan and PET scan but Dr says readings would be false positive due to the recent surgery. Just want to be more informed before taking major steps!!!!
Julie
39 yo Female
8/6/13 excisional biopsy, right floor of mouth
8/12/13 DX of mucoepidermoid carcinoma, intermediate grade
8/30/13 T2N0M0
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yes the inflammation caused by the surgery could produce a false positive and not all tests are conclusive to begin with. You could and IMO should get a second or even more opinions from VERY QUALIFIED specialists starting with a Comprehensive Cancer Center near you.
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.
| | | | | Joined: Aug 2013 Posts: 4 Member | | OP Member
Joined: Aug 2013 Posts: 4 | How do you go about finding qualified specialists? Getting names of one in the DFW area?
39 yo Female
8/6/13 excisional biopsy, right floor of mouth
8/12/13 DX of mucoepidermoid carcinoma, intermediate grade
8/30/13 T2N0M0
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Julie, A second opinion is always prudent when diagnosed with cancer. A Comprehensive Cancer Center (CCC) would be the best place to do this as they see the most and most diverse cases. Here is a list: List of Cancer Centers Positive thoughts and prayers "T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! The list of CCCs will help you to find the country's top treatment centers. A CCC is the best place to go for treatment as it has the countrys top doctors and medical facilities. They use a team based approach and treat hundreds of OC cases per year.
I have gone thru a mandibulectomy and its not easy but it can be done. I suggest getting at the very least a second opinion at a CCC prior to going thru surgery.
Best wishes!
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | In Tx I would definitely call M D Anderson.
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.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Ditto - Texas md Anderson TOP CCC - and great for head and neck cancers 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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