I am in Bartlesville, OK. My ENT is in Tulsa, OK. He recommended I go to OKC where a oral cancer specialist is located. I never did go to OKC, because the cancer was gotten at stage 1 and only needed surgery. Private message me for me info. Were you referred to Cancer Care associates or to the LaFortune Cancer Center out of St Johns?

Walknlite,

She has been referred to Dr. Mark Olsen a medical oncologist with Cancer Care Associates at the Natalie Warren Cancer Center and Dr. Stewart Charles radiation oncologist with Therapudic Radiology at St Francis.

We are looking for an ENT with more experience in SCC of the head and neck but I am feeling that we need to go to a Comprehensive Cancer Center to get the experienced group we need to plan an attack on this diagnosis. After talking to the people in this forum. All we have is the node biopsy pathology report of SCC and a PET scan results at this point we need confirmation of where the primary cancer is located.

Thank you for the input.

Why did you only have surgery? Is radiation and chemo not effective if you have N0 and M0 staging? Or is it a matter of primary tumor size? Sorry I am still learning.

Regards,
Cheryl aka Brick

It was my Drs opinion I never did see an oncologist. He did give me some referrals if I wanted to. He really wanted to wait on the radiation in case it came back because I am so young. We also waiting on the PET scan results to determine if we needed radiation and the PET scan came back clear.

Brick, I am a little confused. You have a positive node and a hot spots on the tonsils and base of the tongue found in a PET scan, classic primary locations for this cancer. What makes you think that those two locations are not the primary and you need to get confirmation of where the primary is? Seems obvious.

Given the fact that you have a significant oral finding of the primary (high SUV on the PET in those locations), and at least a unilateral cervical node involvement, you need to be moving towards a treatment facility with a comprehensive multidisciplinary team approach, not an ENT, though they will likely have one or another H&N surgeon as part of the team. Depending on the extent of of both the primary and the cervical metastasis, you are looking at radiation likely with chemo. Some hospitals are now completely convinced that neoadjunctive chemo-radiation, in which the chemo is given for the first few weeks by itself, is the way to go, as it reduces the cancers size, and that then requires less grays of radiation to deal with. (Radiation itself has long term quality of life issues, the gift that keeps on giving we often say here). Other institutions are believers in simultaneous radiation and chemo. Surgical removal of the tonsil and/or cervical nodes via a neck dissection may or may not be indicated after these. In my lay person's opinion, surgery on the base of the tongue is something you want to avoid as it results in long term quality of life issues too often.

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 *

Just a thought -- since you describe the patient simply as a friend (and not a spouse or other relationship that would give you legal rights), as you embark upon these appointments you should make sure you and she do whatever is necessary legally to allow the doctors to speak to you with the detail you want/need to hear. There are probably privacy considerations that your friend will need to address so that medical personnel can speak with you frankly. And if she wants you to have input on her care (if she is unable to communicate for some reason), that needs to be taken care of as well.

Hi Brick

what a lot of questions lol.Rob had a 4cm node in his neck which was fine needle biopsied first.An appointment was then made for a biopsy under anaesthetic of his tongue ulcer which was on the opposite side to his lymph node.The needle biopsy came back as metastic SCC which we were told just as he was going to theatre for the tongue biopsy so we knew for sure he had oral cancer before the primary was identified.The primary on the tongue was much smaller at 1cm so he was staged at T1 N2 M0 as he had no spread at that time to other areas.David then told me that as he had a secondary lymph node of a fair size this would stage him at 3/4.The numbers are measured by the size of the tumour.The stage ,by the spread.The M part denotes spread outside the oral cavity,like lungs,brain,bones ecetera so i guess if they find the problem in the vertebra is metastic then size will finish the puzzle.

All this information will then be presented to a tumour board made up of several experts,and between them they will decide what course of treatment to recommend.This could be chemo first followed by rads and surgery,or surgery,rads/chemo combined or just rads and chemo,that cant be discussed till all the pathology is in.

Pet scans are out of my field as they are not widely used in the UK, MRI and CAT scans being the tool of choice here.

Sounds as if you are on the case big time so all thats left to say is good luck to you both.

love liz

Leslie, Thank you for the legal suggestion. My friend and I went down the path to get each other legally documented and papers filed with docotrs and hospital to cover the HIPPA privacy laws because of some surgery she had a few months ago. She has no family left and we have been friends for 34 years so we will travel this path together where ever it takes us. It was fairly complex to get the legal work done but well worth the effort! Every one should do the legal work no matter what age you are or what your family relationships may be.

If she ends up being seen out of state (for instance, at M.D. Anderson), you should ensure that your paperwork will be valid in Texas (or wherever you end up) as well. I don't know whether states have different rules about this; perhaps one of the lawyers here can enlighten us.

You are a very, very good friend to be helping her like this.

Good suggestion! And yes, as the kids would say we are VBFF very best friends forever lol.