Thanks all, lots to think about here.

The CCC was the ONLY choice for surgery because it was the only place regionally offering TORS, which I'd decided I wanted. At this particular CCC, after surgery the RO replaces the surgeon as the lead. So in my mind, this is a natural transition point if I decide to change institutions. All of my medical records are seamlessly available electronically.

I have consultations at both locales this coming week.

I have some deficits post-surgery that have led me to think more realistically about my ongoing access to supportive care (dysphagia, speech impairment, trismus, arm ROM).

Also, the RO is recommending radiation only. That contradicts my surgeon's comments and those of another attending doc, who thought chemo would be needed due to lymph node size (2.8 cm) and location (both neck and retropharangeal). When I question the RO he doesn't really explain his thinking.....But he does offer involvement in a clinical cetuximab trial open to rad-only patients. So I want a second opinion on whether or not chemo is advisable, in any case.

T's story is horrific, but I almost wish the distinction were that clear here!

Last edited by Mamacita; 07-28-2013 03:04 PM.

53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides