I'm being treated at MGH. I think I have a very experienced and expert medical team. While I'm not a medical professional, I am a PhD scientist with a background rooted in applied mathematics (which I use daily for a broad variety of government-sponsored engineering research projects)... so I think I am better than most patients when it comes to understanding the medical literature and separating "wheat from chaff" while reading various sources of information on the Internet.

My original (6 cm) nodal mass came up very quickly in March. The source (left tonsil) was identified in early April as the result of biopsies taken during a pan-endoscopy (which included a bilateral tonsillectomy). A subsequent full-body PET/CT, done prior to induction chemo (IC), showed no activity anywhere except the lymph node mass... not even in the remainder of my left tonsil. I responded very well to IC, which shrank this 6 cm mass substantially... but it was starting to grow back in the few weeks hiatus before I began chemoradiation (CRT). The recent CT observes a "matted nodal mass at left level II deep to the SCM muscle which appears slightly less prominent in size than before measuring 2 cm x 1.6 cm x 3.9 cm" and "at left level IIA, posterior to the submandibular gland, an enhancing lymph node smaller than before, measuring 9 mm x 7 mm today while previously measuring 12 mm x 10 mm." [The comparison is to a CT done in late June, at the conclusion of IC but before starting CRT.]

My next PET/CT is scheduled for 11/02/09... and I understand this is quite soon following CRT (so that false positives are likely). I'm really hoping to see negative results in the region of that "matted nodal mass" as this would tend to indicate its just a bunch of necrotic tissue. But, if the PET/CT comes back positive for this mass, I might ask my doctors about doing a FNA (or a small surgical biopsy) to try and sort out whether or not its a false positive.


Dx: T1N3M0 Stage IV SCC Left Tonsil HPV16+

CT 3/20/9. FNA 3/24/9. Panendoscopy 4/1/9. PET/CT 4/22/9
9 wk IC (TPF) 4/25/9. Port 5/11/9 removed 6/4/9 (clot)
7 wk CRT (IMRT; Carboplatin & Taxol) 7/8/9. PEG 7/9/9
CT 10/19/9. PET/CT 11/2/9. ND 12/1/9
6 wk CRT (IMRT; Erbitux, Carboplatin & Taxol) 1/6/10