Welcome, Jennifer!

I have a few items to add to the sound advise already given. It's typical that many patients had a delay in diagnosis, and often given antibiotics. The good thing, is it's HPV positive, which is is biggest favorable prognostic factor we have with head and neck cancer, so it's very curable. If there are lymph nodes involved, it's stage 3 or 4, but can be upgraded or down graded after surgery. Multiple lymph nodes are stage 4, with subdivisions a,b,c and both are treated about the same, and staging doesn't mean as much as other factors, and the TNM grading, which is more often used by doctors; Tumor, Nodes, Metastases. Mine was T1N2bM0, which may sound foreign now, but you'll get to know the lingo, and when I started I didn't even know who an oncologist was! For this late stage, usually multimodalaties are used as treatment, as noted.

TORS have proven to be beneficial in both long term survival, and preserving swallowing with lesser need for a feeding tube, dependance, and shorter duration, if needed. That said, down the line, you should meet with a Speech and Swallow Pathologist, SLP, who is part of a multidisciplinary team at a cancer center, and will give instructions on mouth, neck, and swallow exercises to do to help preserve mouth opening, mobility, and swallowing.

I always suggest getting copies of all scans, biopsies, pathology and surgical reports for your records, which often comes in handy, and says more than what you're often told. From the pathology reports, the Tumor Grade,1-3, indicating how aggressive the cancer is is noted, and other histology. HPV related is often poorly differential, Grade 3, which is usually not a good thing, but with HPV it is.

As far as baseline tests, I would also add a hearing and vision test, as chemo can have an effect on both. Vitamin D, B12, and kidney such as the creatinine, and GFR levels, which will be in the CBC anyway, but the others aren't.

There are many other items of concern, which will eventually fall into place after the initial process or come to mind as needed, so you can just ask anything when you want, and I'm sure someone will have knowledge about for assistance.

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs