My friend had a biopsy - right cervical lymph node removed on 8/6/09. Results on 8/11/09 showed Squamous Cell Carcinoma. A PET Scan was ordered. PET Scan on 8/13/09 shows both tonsils, right tongue, and another node on the other side (left) lit up. There is also a T2 Vertebrae that needs further diagnosis. The ENT said he only sees about 10 people a year that have this disease. The ENT referred us to a Radiation Oncologist and a Medical Oncologist. We got an appointment for the medical oncologist that was recommended by two independent methods for 8/28/09. We are waiting on the Radiation Oncologist appointment date to be set. Tulsa Oklahoma does not have a CCC or any group that specializes in SCC Head and Neck from my research. The current ENT has ordered an MRI of the T2 Vertebrae.
It would probably help to pose my questions:
1. Should we try to find an ENT that treats this disease in more than 10 people a year as a local and long term doctor?
2. Is there a registry of MD Surgeons that specialize in SCC of the tonsils to help us find the best local skilled ENT?
3. Any advice on getting the medical and radiation oncologist to agree on a treatment plan - do we need a surgeon involved to evaluate if surgery should be done.
4. Who stages the disease? And when will it be staged? We asked the ENT but he danced around the answer just saying the staging just went up - after the PET Scan results - and referred us to the raditation and medical oncologists.
5. Do we need to go see a dentist too?
6. I see many have gone to MD Anderson - I would love any input on how that process works - how to get started, who to ask for, when to go, and whatever I don't even know how or what to ask? Do you start treatment right away or have to go back. Radiation seems indicated - does that mean staying in Houston 30-60 days?
7. Any personal information on what to expect to happen next - in particular - what should I do to help - or where else do we need appointments?
8. Anyone have a list of questions we should ask at the radiation and oncology appointments?
9. Any suggestions on reading - I have read everything in the NCI, ACS, and CDC websites that pops up in searches on those site - actually how I found this site...
10. Is IMRT the latest and greatest in radiation technology?
11. Is anyone in a clinical trial?
If you have answers to any of the above please reply. If you have additional questions I should have asked - answer them too. I am a sponge and need to soak this in to be able to help my dear friend. I have been a care taker for 3 people with cancer but never this type and have been overwhelmed with the new terminology. The terms forum here has really helped.
Feel free to PM me if you do not want to discuss/reply in the forum.
Thank you for being here!
Cheryl was taken and my friends call me Brickhead - yep - you can imagine why - and they are right so my nickname here is Brickhead.
