Thank you, everyone for all of the responses. After reading your responses and speaking to several people we are working to get a referral to MD Anderson underway. We are going to keep the appointments here in Tulsa as well. I really want to make sure we get the specialists who do this every day and see hundreds of cases a year. My friend understandably would like to stay at home but Houston is just a 12 hour drive away and 1.5 hours by air. Fortunately I am in a position to go with her and stay throughout the treatment. MD Anderson seems the best option for a complete team to get engaged and work the disease out of existence. In addition we will be asking for the biopsy to be sent to John's Hopkins to get the
HPV test done for reference - thanks to David for his advice. As David says, I don't see how we can go wrong by going to one of the top, if not the top, hospital in the world to get this treated.
Brian, I am still learning about the tests and how to read the results. I have been looking for a primer on reading the pathology and PET scan to understand the information. Some of the terminology is familiar to me, but some is not, and I want to understand so I can ask pertinent questions when we get to the doctor�s appointment. I am just one of those people who has to know what every little word means and the implications to be able to understand and it is hard for me to formulate questions when I can�t speak the language. I am reading project �what I wish I had known then� and it has so much information in it. The tag lines of each poster are great too because I can see if the person has had a similar situation.
As far as the diagnosis it appears likely that the primary is in the tonsils or tongue but no actual biopsy has been done on a primary. The PET scan impression regarding the tonsils reads � clinical correlation is advised. We only have the node pathology and PET scan and the finding / impression reports to read. We only had 30 minutes with the ENT who read the results for the first time in the room with us and he immediately referred us to oncology. We are waiting to go to the referral appointments now. I have read enough to be scared AND I am scared I have not read enough. I am working toward the goal of not ever having to say �I wish I had�. I am one of those people who has to get down into the weeds of a situation to investigate the smallest stuff then come up into the sky for the big picture. I take direction well so lead me where you think I need to go and I will go there to learn while we wait for these appointments.
Is there a primer I can read on how to understand the pathology and PET scan results? For example: the SUV numbers mean nothing to me and the results show SUV numbers from 2.6 to 10.0. Since these numbers seem to be the important part of the PET scan I want to know what they mean.
The neck � right cervical lymph node excised was 3.6 x 2.2 x 1.5 cm - diagnosis metastatic squamous cell carcinoma and when I read the staging documents this is part of the �N� not the �T�. The PET scan indicates there is bilateral neck lymph node metastatic involvement with SUV�s of 3.4 and 4.0 - so I think this means N2 or more.
The ENT did not answer my question about the stage of the tumor � I don�t know why? I assume (and I don�t want to assume) because the pathology of the metastatic lymph node and the PET scan results are not enough to define the stage� but I want to know, not just assume.
Does a primary have to be biopsied by excision to get a �T� stage number or is the PET scan enough?
The tonsils have SUV of 10.0 right tonsil and 5.3 left tonsil (the lymph node biopsy was on the right side of the neck). There is �soft tissue prominence� on the right extending to the base of the tongue. Does this all mean that this is a T2 stage? Does this mean the tonsils and base of tongue are the primary?
As far as the �M� the PET Scan shows an SUV of 2.8 in the T2 vertebral body � the presence of osseous metastasis cannot be excluded � MRI is recommended as a follow-up � so until we get an MRI result we cannot know the �M� number.
Please tell me if I am going into too much detail for the forum posting. Or if I just need to go read something that would help me understand.
Thank you all!
Cheryl aka Brick - we can't all be stars ... but we can all twinkle *