Angel - I think at the very least, you should have a consult at Emory. Just a clarification, Emory is NOT a CCC - comprehensive Cancer center. They are trying hard to attain that level but don't have it yet. That's one of the reasons that I went to MD Anderson in Houston - the other being that I decided I wanted to go to a top CCC and not mess around, and I was lucky to have the abilty to do that, plus have family in Houston which is one of the reasons I chose them.

However, one of the ENT Surgeons at Emory studied under my surgeon at MDA. Given that it sounds like it might be hard for you to travel far, you should think about Emory. Here's a link to their department: http://otolaryngology.emory.edu/index.htm

The answer to your question is yes I had surgery in 10/07 then started chemo and radiation in 11/07. The neck dissection in which was positive for stage 4 cancer. Now if the lymph nodes in the neck were negative then the doctor said he would have only done radiation on me. I was not incubated because the tumor was on my tongue and did not proceed down the base of my tongue to the throat. 1/4 of my tongue was remove but I woke up talking and haven't stopped every since. I live here in a small town and had the best care ever. My ENT is very direct and tells me like it is. As you are new to this web site if you look at the bottom of this post it will give you info about me it starts out Tammy then with my diagnosis etc.. It helps to relate to that person of there circumstances. But I also wanted to know if a biospy was done ? That is how they know it is cancer. I had 1 biopsy it didn't show cancer then 3 weeks later after the sore worsten he did 2 more and it came back positive. Doesn't make since that 3 weeks later it showed stage 4. But what of all of this makes since. If you need someone to chat with just email me. Take care !

Angel --

Clarification of Ginny's clarification (this is from a post I made last year):

The term CCC as most frequently used here [on the OCF message boards] means that the facility uses a team approach to dealing with an individual case, bringing the knowledge and experience from a variety of specialties to each treatment plan -- a "comprehensive" approach, as it were.

I think that what Ginny (Me2) means when she says that Emory is not a CCC is that it is not a National Cancer Institute-designated Comprehensive Cancer Center. Institutions choose to apply for such a designation, which is based on the facility's interests in research (since the NCI is a main source of funding for research programs), and it sounds from Ginny's post as if Emory is working on that process, which involves a lot of paperwork and can take some time to complete. Here's an explanation from that same post:

[quote]The National Cancer Institute provides funding for research. Institutions apply for NCI designation (the selection is done through a peer-review process), and the term "NCI-designated" primarily has to do with the facility's research interests --- not the quality or scope of patient care.

An NCI-designated comprehensive cancer center means that the institution is involved in research in three areas: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated cancer center concentrates research in one or two of those areas, and a few of these facilities -- like the Wistar Institute in Philadelphia or the Salk Institute in San Diego -- do research only. Further information is available here: http://www3.cancer.gov/cancercenters/description.html [/quote]
Based on what you have posted, it appears that your medical history is complex. An appointment at Emory or somewhere similar, where a team of physicians from a variety of specialties can evaluate what's going on (starting with a biopsy to determine what you're dealing with), is a great place to start. As I mentioned before, several posters here have been treated at Emory and I'm sure will be happy to provide information about their experiences.

All the best --
Leslie

Thanks Leslie for posting this...I had not researched facilities at all when I answered Angels and regretted it. I have learned something myself about the NCI designation and what it means.

Always something to learn here....Deb

Thank you all for the excellent information you have given me. Today I went and picked up a copy of the ct neck scan and I tried to get a copy of the pet scan but was unable to, however. I have an appointment with my ENT Doctor on Monday and his office said we would discuss this more in detail when I see him as to what he plans to do and more on my diagnosis. I explained that I would like to know more information about my diagnosis so I have the opportunity to research it with some knowledge prior to my next visit with my Doctor. But unable to get anymore today. My left tonsil is very swollen since first of February and looks almost like strep throat and on each side of my throat under my chin, I have large swollen glands like I have the mumps but without the swelling in the jaw area. I talked with my son and explained what you all have said in reference to a biopsy and he totally agreed that it must be done first! What my ENT said to me was he must remove the tonsil and have it examined, and would have to do a neck dissection as the lymph nodes were involved and then do radiation and he wanted to do this in 2 weeks and the surgery would take about 4 or 5 hours if all goes well, and he would have another ENT assisting him in the surgery and he will try to preserve all the nerves and blood vessels that he could during the surgery. I explained to my son that is not the right order in which we need to proceed that a biopsy must be done first and I needed a second opinion at a CCC. I called for information also from the National Cancer Center and they have e-mailed me a lot of information so I will be reading up on that as well. The pain in my throat seems to be getting worse in the last month. I must say that I am very worried about all of this and I thank you all again for the information and your kindness. I will post again Monday and maybe I will have all the information I need for you all to be able to steer me in the right direction with. Again, Thanks, Angel

Me2, It is wonderful that all went well for you and everything looks good now, and I thank you so much for the information.

Leslie, The information you have provided was very much appreciated. I just am so thankful that I found this website before I proceeded with anything. You all have been so nice and so informative and the willingness to share a part of your lives means a lot to someone like me who doesn't have a clue as to what to expect. Thank you so much. Angel

David, In reference to your question on the size of the nodes it said soft tissue fulness and 1.5 cm at the left linguel tonsil area, a singular anterior jugular lymph node 7 mm node on right side is evident, and asymmetrical enlargement of the right thyroid lobe 1.5 cm in upper aspect of right lobe. I will get the pet scan and other info on Monday. Thank you, Angel

Angel, I see you had a Pet Scan. To only my knowledge I have only seen people have a Pet Scan after treatments I just had mine ( all Clear ). But I can be wrong. Also my ENT told me that even if my tumor was not cancer he was removing it no matter what. Every doctor is so different. Maybe your doctor knows he needs to do surgery no matter what so why put you through a biospy. I don't want to confuse you anymore then what you already are. So much to take in we all know that. But I never thought I would be on here sharing what I know like so many did for me. Just take a deep breathe and you will get through.

Angel,

If you're interested you should read more about HPV but first you need to be seen by a CCC. You are putting the horses way before the cart here. BTW even if you were to have HPV in your cervix that doesn't mean it found it's way to your mouth. HPV can lay dormant for decades before something happens to allow it to become cancerous and this is a really overly simplified statement.

First things first....make an appointment NOW.