Oct 30, 2011 - 4:18 pm
I just met with a local survivor group....and am more confused than ever. Four patients have had the TT and are awaiting RAI (all with spread to lymph nodes). I am trusting my endo to make the right decisions but how can I do that when they all seem to have different ideas on how to treat!
Endo #1: recommends "low" dose of RAI, a very strict LID before hand (nothing from cans, yellow dye etc), will do trace test/WBS than RAI. OK to eat normal diet 4 hours after RAI, trace test/WBS 10 days after RAI.
Endo #2: recommends no RAI (even with a small amount of spread to lymph nodes), After a year, if still present after WBS, low dose RAI with a very strict LID before hand, stay on LID for 10 days after RAI, trace test/WBS 10 days after RAI.
Endo #3 (mine): recommends "high" dose of RAI, somewhat strict LID (never mentioned cans, but I found that out on my own.......), will do trace test/WBS than RAI, wait two days for normal diet, no WBS until 6 months later.
Endo #4: recommends "low" dose of RAI, no LID, will do trace test/WBS than RAI, no WBS for one year after RAI.
Endo #1 also stated that patient has a large amount of left over tissue near neck (based on TG levels..no scan) and that is why she is going for the low RAI. My endo never mentioned anything about this.
This is my life we are talking about. How can there be so much discrepancy and should I be seeking a second opinion? I am so freaked out and worried I can't seem to focus on anything (could be the no cytomel for last three weeks!).