Hi, I have a few questions for folks who had radiation/chemo at a distant CCC:

-- Did the distance to the CCC make it harder to access support care during treatment and in the months following? (speech therapy, swallow therapy, PEG, followup scans, etc.)

-- How did you handle medical emergencies (i.e., PEG issue at midnight Saturday)?

-- Did you have any problems w/pain med prescriptions that can't be faxed/mailed/phoned in under controlled substance laws?

-- Any other considerations?

Our nearest CCC is a 4-hour round trip. I went there for trans-oral robotic surgery and every facet of the care was outstanding. I'm wondering, though, if long-distance care at a CCC would truly be better for the radiation phase of my treatment.

I live 5 minutes from a major teaching hospital that has a team specializing in head and neck cancer. For all I know it could qualify as a CCC, if CCCs were still being endowed. I'm trying to figure out if the CCC "brand" really carries enough genuine advantage to justify the burden commuting for care would put on me and the friends and family who are going to get us through this.

Your thoughts?

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