Hello Again Friends,
I thought I would update anyone interested on this continuing recurrence journey. The biopsy of the maxillary area (previously resected and radiated) was positive for SCC. The MRI did not show the tumor, but that's usual for me as all my tumors have been so small they are not easy to detect on scans. (A good reminder to all of us that biopsy is the only definitive mode of diagnosis!) I will have a full body PET tomorrow and further discussion with the surgical oncologist about the options he's and the tumor board are proposing. The good news, no flaps in the conversation. The not so good news is that they would have to resect about half of the upper palate because of margin issues and the prior radiation, and thus, healing issues. I'll know more tomorrow night, but my questions for you all are:
1) How has the quality of life been for those of you with parts of your palate removed and the need for a resulting obturator? I have had a prosthesis for 7 years, since my first surgery removed the the section of the upper jaw so I'm used to that, but this would definitely involve going into the maxillary sinus. I don't care as much about the eating issues as that is already compromised, but more about communication.
2) I will be meeting with the medical oncologist about clinical trials at Stanford, but do any of you know of any or experimental treatments going on elsewhere in the country, that might be interesting to look into? I've been researching different cancer centers, but I'm one of those 7% that are more unusual, and thus, harder to find others with my situation.

Thank you to anyone who wants to chime in here. I know none of us are doctors, but there's a wealth of experience on this board and I would love to hear from you! Thank you do much!
Love,
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection