OP Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Hi Everyone, So unfortunately the biopsy of the two new spots (found on CT) proved to be positive. Next step: get a PET and make sure they are the only 2 spots--and no spread elsewhere. If no spread, then stereotactic rads. If not (ie: further spread) then it's more of a systemic treatment approach. PET will be done in 9 days since my husband is in the throes of a nasty chest cold.
CAN I SCREAM ???? I am SO FRUSTRATED that they insisted on a CT scan and not a PET in the first place. When we asked "why CT instead of PET?" we were told that PET can show false positives in the lung area--thus creating unnecessary worry. (ARGGGHHHHHHH!!!! OK !!??) I guess my frustration is here we are waiting to do a PET anyway.
Can anyone else weigh in on their experience with PET versus CT scan? I have been PM'ing with at least two others in a similar lung lymph met situation (but at different CCC's) who are having PET scans to check lungs. I know I know I know everyone is different, but I am beginning to wonder if this is more of an institutional approach where we are.
Just feeling ready to scream. Maybe beginning to lose my cool--and my humor-- with all this. Gotta hold it all together for the kids (who are blissfully unaware of these complications) and the hubby-- who is growing quieter and quieter each day.
Mary Caregiver to husband, 60 Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+ Oct '12 Sub.Gland transfer Nov-Dec '12 IMRT x 33 + cisplatin x7 March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED) April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16 9/13: 33 rounds IMRT to lungs; carboplatinx7 CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC 30 rounds IMRT to left lung; treatment ended 5/29/14 Sept 2014--CT clear; December 2014 CT clear
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