May 04, 2010 - 5:18 pm
It is that time - the time to see if 2 years after the PET scan that showed NED (no evidence of disease), I still have NED.... Most of you know what this is like and you newbies will quite soon... know that nervousness before "they" look again.
Thanks to this board and what I think I remember my old medical oncologist saying, I can expect an annual CAT until 5 years have passed. Anyway, I received a call telling my when the appointment is and that there would be lab tests beforehand but no mention of PET or CAT. In fact the initial communication only mentioned the doctor appointment. So, I called and asked about tests before the appointment. That led to a phone message saying yes that labs were scheduled just before my meeting with the doc.
Well, I checked back here and reviewed the paper mentioned by Liz (lizdeli) www.ncbi.nlm.nih.gov/pmc/articles/PMC2630809/ and on www.nccn.org and decided I really should be having a pelvic CAT and so I called again. This afternoon "my" nurse called back and confirmed they are ordering one a few days before my appointment. I tell you, oncology nurses are the greatest!
I guess being in rural Maine means these guys don't really know anal cancer very well- or at least this new doctor, who is replacing my original one who moved on to NY (now why would he do that!?!) is not familiar with it.
Message here is we gotta be our own best advocates!
How may of us out here are more than 2 years past original diagnosis?