Susan,

Read my Signature Line, BOT, Met to 2 nodes, HPV+, NO SURGERY, Stage IV, Tx consisted of concurrent chemo/rad and results = 100% OK almost 4 years later. Get to Sloan. Nuff said!

David, I literally just got on with a pen and paper ready to interpret people's signatures. True story. And in my rational moments I know I'm trying to figure out things that I shouldn't. But I'm also trying to sort out what the MD said vs what people say here(and my money in on here) till we get to Sloan.

For example, MD told me he didn't see anything specific in Dave to indicate lung cancer but it is very common if it has gone into the cervical lymph node. (By the way, he said this without prompting. I wasn't even thinking of lung cancer. I was too busy trying to figure out what oral cancer is). It's a hell of an image to sit with while he is doing his PET.

I can't tell you how much I want to sit across from a calm, bright person and get some answers. Except for one 25 minute office visit all these conversations have been on the phone with Dave or I and then comparing notes. Not a good way to get info.I tell you.
And David,I love your signature line!!!

Listen or should I say DON'T LISTEN to that chicken little of a doctor. As long as I've been here, HPV- or not, I don't remember hardly anyone that ended up with lung cancer as a result of OC. Yes it's a destination once it leaves the nodes but in my experience here it rarely happens.

I would really try and wipe out your memory of what has previously been told to you and just focus on what they say at Sloan, and us of course. lol

12 it is! u dont have to use them all...and u can request more.
i believe the PET will shed light on the spreading.
i would stick with sloan for the opinions.

In my shower ephifany(isn't that where the best ones happen) I realized why I was so nuts. The obvious ,of course(the not so good news). But that also the delivery of the news.

But I keep coming on here because this is where I get my encouragement. I racked my brains and realized this MD has not said ONE encouraging thing.
Example 3000---when he said the MRI showed it was all on the same side(or didn't cross the "midline") I said "well, that's good." and He said" I guess but I did feel something on the left side we'll know more after the PET." Now I'm not doubting that he may be right(although I hope not) but wow leave me with something.

And David thanks for calling him a chicken little" It cracked me up.

Does that make sense???

Well Susan, I was going to say what others have said. Spend your energies on getting the tests done, getting your notebook gathered with all pertinent information (like business cards from each of your doctors and test facilities because you will have to fill out info sheets a million times, pages for notes, written test results, questions, etc.) and conquering household things that will have to take a back seat once you start treatment.

In other words, do things that you can control and wait for the experts at Sloan to answer your questions (you know the ones in your organized notebook ;)) based on those tests and give you their diagnosis and treatment plans.

And to keep the anxiety down, I would take Brian up on that phone call to see if your appt. can be moved up.

Been there, done that, got the grey hairs to show for it,

Deb

You also might consider taking a voice recorder along and asking the people you see at Sloan if they mind your taping the appointments. You should also plan to take notes, but that way you will have a record of everything that was said -- and that could help you with follow-up questions in the days after the appointment as you digest the information you were given.

Susan,

Being a smoker my ENT wanted the full workup on the lungs. He said that the cancer could go to the lungs but generally in much, much more advanced cases.

Also, the cancer that has moved to his nodes is Squamous Cell Cancer (SCC). If it went anywhere else in the body it would still be SCC. So if it showed up in the liver, it�s not liver cancer, or in the brain, it would not be brain cancer, it�s SCC in the liver or SCC in the brain.

I say this because lung cancer is not SCC and neither is brain cancer. Lance Armstrong dealt with testicular cancer that spread to many other organs, but it was always testicular cancer.

Kelly

Take some one with you with a list of prepared questions to ask, Get them to qrite down everything if possible, then you can discuss it when you get home. 2 heads do a great job when you combine thoughts. I had My G Friend, my daugter that is a charge nurse in a heart unit and my daughter in lwa another RN with me and they did a good job dor me with questions and such.

I have not been on in a while, but I wanted to say that you are geting great advice here and really do not have anything to add. I will say that you can and will get through this. It is a tough road, but you have come to a great place for support.