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| | Joined: Feb 2014 Posts: 3 Member | OP  Member
Joined: Feb 2014 Posts: 3 | My daughter had SSC of the tongue and had surgery in February to remove 1/4 of tongue and partial neck dissection, no RT or chemo. Tow months post op and she had started to have significant swelling in her tongue and a sense of swelling inside her neck. After reading further, this sounds like lymphedema if he tongue and internally int he neck. Has anyone experienced this. She is going back to see her surgeon in a couple of days, but she is afraid he will not listen to her, she is desperate to get help with this. Thanks so much for your input. | | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Chock,
Viz your daughter, I would change doctors in a heartbeat if I did not have confidence that s/he was not listening to me. I've done it three times in my life.
Best of luck and warm regards,
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | The doctor works FOR your daughter. If they arent listening, its time to speak up and let them know they need to fully understand the situation. Tongue swelling should be taking seriously. If this is impacting her breathing at all she should go to the ER.
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  | | |
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