If you are concerned that your oncologist is not that familiar with OC, then you need to be seen by someone who is -- whether for a second opinion or for continued treatment.

As a starting point, take a look at this list of National Cancer Institute-designated cancer centers. With the exception of those few that do only research, all these should have a dedicated head and neck cancer clinic where the only thing they deal with, every day, is this type of cancer. In your home state, the cancer centers at Wayne State and the University of Michigan are both on that list.

Your current doctors should welcome another opinion from people who deal with this on a daily basis. (If they don't, you need new doctors!) At the least, you may be told that what your current docs are doing is what the specialists would do; you also might hear of treatment options that your current docs are unaware of.

I wish you all the best. This is the best place around for information and support.

Mom,

Take Leslie's advice right away and get an appointment at one of the two centers that she pointed out.

It is imperative that OC be treated by someone that has the experience as well as the support of a team of doctors, better known as a tumor board.

As said before, only a biopsy can determine if you have cancer.

Cooking,
You have gotten a lot of great words. I will tell you your story sounds like mine. I had surgery with clear margins, and another lump 3 months after a clear PET scan. Unfortunately my new lump was cancer. I am now in remission and been told that my prognosis is really good because I was blasted with rads and chemo. We also caught them very early. You will be fine. Let us know how your PET scan turns out.

Mom,

I am in Michigan and was treated in Grand Rapids. I recieved a second opinion from U of M. My RO is from U of M also. I got great care from a team that only workes on cancer.

Where are you in Michigan?

Cooking,

it's heart-breaking to go through this no matter what your circumstances are, but to do it while raising young kids (I was diagnosed at 38, a little over a year ago, and have three kids - the twins were 6, and the oldest was 10 at the time). My little ones knew that I had to have a surgery because I had "a hole in my tongue" (that's a medical term ! ), and the older one didn't know much more. They still don't. They saw how scary I looked when I got home from the hospital nearly two weeks after the surgery wrapped in gauze, with feeding tube hanging out of my nose, unable to speak and eat, they saw how sick I was during treatment, and that's more than they should handle already.

Now, I look fine, I eat fine, I speak fine (can't roll my Russian Rs, but that's my biggest problem for now, thank god), and we're over the scary stuff. For now. I know that I'm always one visit away from getting on the same rollercoaster, but my kids don't need to know that.

Just do what your gut tells about talking to your kids, but they are at a very impressionable age, and I am pretty sure your 10-yr old can google as well as anyone, so keep that in perspective. They will internalize a lot, and project a lot. It's all very individual. I think the way we handled it worked for us. My oldest knew I was going through radiation (didn't know much about chemo), but he was too young to know what that's for. Had I said cancer, it would have devastated him.

I also met a mother of my kids' friend who is a psychologist, and she was all - you must tell them everything because they need to be prepared if you die. Um... NO!

I know I'm rambling. But there is no right and wrong here. Just don't jump to conclusions and don't scare them earlier than necessary, that's all.

Million hugs to you. I hope everything goes well with you.