Update on MD Anderson and the diagnosis.
What an amazing place. MD Anderson Cancer Center (MDACC) is a very organized group of people focused on the cure and treatment of so many different types of cancer. The Head and Neck group is amazing. We had been to 3 different doctors in Tulsa - none of which could say for sure where the primary cancer was after a needle biopsy, full excisional neck node biopsy, nose and throat scope, CT scan, PET scan. We went to one doctor at MD Anderson and he did a physical exam and within 30 seconds of looking at her tonsils - he said there is the tumor - in the right inferior tonsil! Over the next week we had a definite primary tonsil excisional biopsy, a full CT Scan, and a full body PET scan that showed no distant metastatic disease! In the first week we had exams by the ENT Surgeon, Medical Oncologist, Radiation Oncolcogist, Dental Oncologist team that all meet once a week to discuss the tests and treatment plan and agree on how to proceed. This week we have appointments with dental to get the mouth stent and flouride trays built, another appointment to do the radiation simulation. The radiation simulation will then be presented by our Radiation Oncologist to the entire group of 8 Radiation Oncologists and they must all agree that the simulation is targeting the proper areas before the mask can be built. In the mean time the Medical Oncologist has defined the chemotherapy plan to begin a week before radiation with a loading dose of Cetuximab Erbitux to enhance the radiation effectiveness. Then once a week during the 6.5 weeks of daily radiation treatment.

We have moved into an apartment fully furnished less than a mile from MDACC and have been eating everything in sight! The apartment is very nice and we found it by using the MDACC website list of housing.

We have a T2N2bM0 staging but the doctors are all very carefully saying look - the tumor is very small, with only right side metastatic nodes involved, does not appear to be on base of tongue and is probably HPV positive (they did a special biopsy to test for HPV) and is CURABLE!

In any case, both she and I are in 2 different medical studies. Both us are in Dr. Sturgis' study related to head and neck cancer (I as a control case and she as a primary - about eating habits). She is also in a special HPV study. I am in a melanoma study as a control. We both volunteered for any studies MDACC has going on.

I would highly recommend to anyone to come to MD Anderson to at least get a diagnosis from people who ALL they do is look at cancer and fight it every day of their lives - it is night and day compared to the doctors in Tulsa - who maybe see Head and Neck cancer once a week. We accomplished in just 30 minutes at MDACC what Tulsa doctors couldn't do in 2 months.

If not MDACC at least the closest CCC you can travel to for an appointment. We just called the 800 number and got an appointment within 1 week of calling. We saw the right doctor the first visit and he set up the whole team!

We would have never gotten here without this forum guiding me to the right place!
Thank you for building this place online!
Cheryl aka Brick