Please never be afraid of offending me, I am outspoken, and as a result I have had to develop a thick skin. What is import are not my feelings about things, but your health. All I wish to leave you with is a bit of perspective and this will partially answer digtexas too. Base of tongue cancers move rather quickly unlike tonsilar cancers which move slower. Why this is, no one knows, and it doesn't apply to every cancer in every person. Genetic predisposition may make a normally slow moving cancer run like a prairie wildfire. The point of perspective that I wish to leave Desiree with is this. I hear from many people, that they wish to be treated locally, by a doctor they have heard good things about in their town, they list the geographic concerns, they list the impact on their families, and they even list of all things, convenience. I am always in awe of their perspective. They have a disease that kills more than it spares. Even in the most competent hands and facility this disease wins all too often. And they are thinking about something other than surviving it. Surviving it, since they can not cure themselves, entails picking the best possible team and institution to be treated in, and trusting them to bring you out the other side of this. Perhaps you can attend a tumor board at MSK in NY and receive MSK protocols in your neck of the woods afterwards. That may be an option. But you won

Very well put Brian! I have met a few in my travels who were more concerned about convenience and the grimm reality is that this disease is a killer and we have to give it our best shot (and maybe your only shot). Like you, I researched my options, doctors, institutions, morbidity rates, etc. very carefully and I was willing to go to any lengths to get well. I have complete confidence in my medical team - they never let me down and have been ultra vigilent and responsive (without any intervention from me). Next week I see three different doctors at different times for my 2 month checkup. I just had an MRI. My radiation oncologist writes textbooks on IMRT treatment protocols and is also a professor and is well published. It was worth traveling 60 miles a day to have one of the best in the world, but I would have traveled even further if that's what it took. I have worked in the medical field as a regulatory consultant for 25 years and have met many doctors some average and a few great and all points in between. I just can't even fathom trusting my life to an average doctor. Your decisions for treatment are probably the most important ones you will make in your entire life. The statistics for oral cancer were enough to convince me I really had no other choice. It's no surprise to me why you are #4 on this list.

I agree with Brian and Gary about using the best doctors and facility if possilbe, but I had the convenience of driving 20 minutes from my home to MD Anderson and valet parking. Being in my home town I had my mom and sister and a host of volunteers if I ever did not feel like driving. While at MD Anderson I have met people from all over the country and the world for that matter, most of whom check into motels while they spend 6 weeks in radiation treatment.
In my opinion this is a luxury ( although a depressing luxury ) and obviously not everyone has the resources to go out of town for treatment.
In Desiree's situation it sounds like it would be very difficult for to travel all the way to NYC every day for treatment, especially with small children. You can only do what you are able to do.

My two cents,
Danny G.

Okay- Reading your reply's, I am very upset. I need for everyone to know that I HAVE KIDS that NO ONE is responsible for them BUT ME AND MY HUSBAND!! I have people who will help, but not EVERYDAY for me to drive that far. I am not rich, cannot afford to drive back and forth daily, much less stay there for however many weeks to have treatment. I COULD NEVER leave my kids for overnight (unless things were out of my control) and I could never expect them to stay somewhere with me for weeks at a time. I bet that everyone who said they would drive an hour everyday (in my case it would be 1 and 1/2 hours each way) does not have children that they are directly responsible for. If I were married with no children, I would travel anywhere to get this treatment, but that is not a reality at all for me. So, with that said, please understand where I am coming from. (Danny, I realize that you understand and thanks) Like I said in my previous postings, if I do not get the answers that I want on 5/8 (thurs), I will definitely have to go to MSK, but for now, I have to think positively that they can treat me successfully here. Sorry if you (anyone) does not agree with my decision. I came to this site to gain knowledge, but also for support, and I feel that I am getting less support right now. If you do not agree with what my plans are, no matter how much you think you are helping me by telling me you agree with Brian, please do not post a reply. It is only making matters worse for me in my head, because not only am I not POSITIVE about my diagnosis, but now I am not positive that I am doing the right thing. Hope no one is offended by this posting, but I cannot keep reading these reply's that tell me I am making a bad decision, for myself and my family.
Desiree'

Desiree',

What ever is written, said, or thought here is out of LOVE and human compassion. The comments here are not intended to hurt or to make you feel bad. Some of us here are a bit intense (ok sometimes really intense), but that intensity is directed entirely at the Cancer not at you, at all. The fact that the THING has gotten a piece of us (literally) causes us to want payback.

Truly I believe every one here is pulling for you and your family in thought, and prayer and you are doing a great job.

Desiree,

I think going to Fox Chase is a good idea given your circumstances. I also think going to MSK for a second opinion would be a good decision. Depending on what each says, you could possibly use a recommendation of MSK's at Fox Chase. Any doctor who is worth his salt would be willing to consider using a treatment protocol from MSK. Another option for a second opinion or treatment would be Johns Hopkins in Baltimore.

The important thing is to get the ball rolling. But also make sure you get adequate testing done before you start treatment. At the very least, you should have an MRI done of the head and neck. And make sure you understand all the options before choosing your treatment.

My daughter has a 6 yr old, so I understand what you are saying about having to care for your kids. Please understand, though, no matter what treatment protocol you choose, there will be at least a short time, and possibly a very long time where you will not be able to care for them adequately by yourself. You WILL need help. It would be a good idea to start checking into groups like the American Cancer Society to see what help they provide in your area. Local churches and community service groups (Lions and Rotary clubs, etc.) may also be a good resource.

I hope this was caught at an early stage and having a positive attitude is definitely a plus. Unfortunately, Brian is right about tongue cancer being one of the worst types. We were very positive at the beginning of my daughter's treatment, but we are now dealing with a very grim situation where there is very little hope for any kind of remission. You need to stay positive, but you also need to know that if this is cancer, you are in for the battle of your life. It will not be easy, but if you go in with your eyes wide open and armed with a good (no, make that a GREAT) team of doctors and a good support network of family, friends and community, you have a very good chance of beating this! I wish you the best outcome possible - LIFE!

Rainbows & hugs,
Rosie

I apologize if my comments have upset you, that was not my intention. You are obviously an intelligent person, with some medical background. You know what the situation is, and what your limitations are. Those of us out here do not know you or your situation completely, and our good intentions may be out of line with your desires. I will refrain from posting to your messages. Please know that you have my wishes for the best possible diagnosis, and if it is something bad, for the most rapid and successful resolution to whatever you have to deal with.

Fox Chase is a member of National Comprehensive Care Network see: http://www.nccn.org/
Aren't all of the hospitals on this list pretty much on the same page? I would feel comfortable being treated there. It sounds like a very reasonable second choice to MSK.

Desiree,
These are trying times for you, and it is very understandable that you don't want to leave your children. It sounds like medically you are in good hands.
I do want to say that Brian always means well. He has dedicated himself to helping those of us who are suffering from this dreaded disease and time and time again he has shared his knowledge with me when I had questions about my own treatment. His committment is awesome and I respect him highly.
Just know that Brian is very forthright in his advocacy against this disease and everything that he wrote was what he believed was in your best interest. His only motive was to get you the best treatment possible.
I am sorry that some of the suggestions of peoople here offended or troubled you. These are extremely trying times for you...certainly the craziest part of the whole process. All of this will sort itself out and you will make the best decision after consultaions. Then things will settle down, be less traumatic and you will get treated and get better.
Take care,
Danny G.

Man-I am working on the secong page here of the same topic for the last week. I seem like a pain in the hind end, but I think I came off the wrong way. I know Brian is trying to help (thanks Brian), but when I read what everyone had written to me, including himself about HAVING to go to MSK, I felt like if I did not then I shouldn't bother coming back in here because you would all think I was handling my situation wrong. For some people, that is the best and wisest decision. But, right now, that is not the case for me. I have not even heard the Oncologists opinion and won't until Thursday afternoon. I want everyone, inculding Brain's, opinion but it doesn't mean I am going to listen 100% and if I choose not to do what you think is the BEST choice, I just don't want to be criticised (sp?). I KNOW you guys all mean well, believe me, I do. Like I said, I want your help and I hope I continue to recieve your support.
Rosie-It is scary to read about what your daughter is going through, and being close to my age, with a child as I have, I can only imagine. Luckily, if I do have to have treatment (assuming I do have cancer), I found out that both of my sister-in-laws will be home from college beginning this week and will be home the entire summer, so I am sure that they can and will be a big help to my family. They do not even know that I may be dealing with something like this, and I am not sure I want to say anything.
Question-Did you guys tell any friends/family (outside of parents/spouses) what you thought you were dealing with before you actually had a diagnosis? I have only told my parents/in laws/and 2 friends at work (nurses). I, myself, feel like I do not want anyone to worry about me unless there is something to worry about. Some people appreciate the moral support while they are going through the diagnosis stage, but I am not so sure.
Also, I had my first reality check today when I went to the mailbox. The "new patient" forms for the Oncologists office came today and I said to my husband, "I never thought in my wildest dreams that I would be filling out papers for this office". Too weird. He doesn't want to talk about anything though because he wants to be SURE of what I am dealing with. He really doesn't even like me on this site because he can't understand why I am scaring myself before I even know what my diagnosis is. I told him that I, and my doctor, were like 90% sure and that it is nice to come to a place where people tell it like it is, no matter how scary. This way, I will know what kind of help I would need, and support systems to have in place. I thank everyone for their input up to now and I invite anyone to change the topic now to something else until Thursday (when I will come back with a diagnosis!!!)
Desiree'