Hello Everyone,

Not happy that I made the club but it's great to find such a dedicated group of responders.

I recently discovered that I have stage IV Tonsil cancer that spread to at least two left lymph nodes. The lymph nodes were removed for biopsy on Jan 9 after the needle biopsy came back inconclusive. Those nodes were positive for cancer with HPV 16 and a PET scan was completed but didn't show the primary site. My surgeon decided to do a tonsillectomy and random biopsy's in hopes he could find the primary site, which he did on the backside of the left tonsil. Both tonsils were removed on 17 Jan as well and all affected tissue around the tumor. Biopsy is still out to confirm the area around the tumor is free of remaining cancer cells.

Today I met with my ENT surgeon, Radiation oncologist, and medical oncologist to discuss treatment options. It seems that there are two/three options available. Neck dissection with rad (33-35 sessions). No dissection with rad (35 sessions) and 3 doses of Cisplatin, or a trial option that will include 35 rad sessions as well as treatment with cetuximab. I can find a lot of material for the first two options but I'm curious if anyone has personal experience with or has good reference pages for the use/outcomes with cetuximab. I'm not sure if the study uses the drug in conjunction with cisplatin or alone, but I'm curious about this route. I'm not excited about any of these options but want to make the right decision for my case. The primary site is removed as well as both nodes, so I'm not sure if a super aggressive chemo treatment is something I should consider if I can take a more mild route with the same results. Hope someone can shed some light on this third option or perhaps has the same experience as I. Thanks for taking the time to respond.

Dave R
T1 N2B M0