My mom had surgery last month to remove the tumor inside her lip. After the surgery, the dr said the margins were clear and we should come back in about 2-3 wks to remove the stitches. She had a radical lip disection. We went all the way to Manhattan on Friday and he wasnt even there. The nurse told us that the pathology report showed clear margins but one side was not as clear as they would have liked. She said to call the dr on Monday to go over results. He finally called back on Tues. and said that the cancer was actually intermediate to advanced (he originally thought it was low grade). His concern now is that the cancer may have spread because the cells are so aggressive. He said he needs to see the tissue samples himself to really know. He had requested they be sent to him. Needless to say, I am very upset. Not only by this new information but by the fact that over 3 weeks have passed since the surgery. Shouldn't he have said something sooner? He told my mom that we have 3 options at this point. More surgery, radiation or a wait and see attitude. He said that she should have a pet scan in about 2 months. Doesn't this seem obsurd? Why wouldn't he give her a pet scan now if the cells are so aggressive? And shouldn't he have done a neck disection? I suggested it at our first meeting and he just shrugged it off. He was convinced it hadn't spread to her lymph nodes. I am so upset with myself for not being more assertive at that meeting. I thought I was prepared, but now I am questioning everything. The fact that she was at Memorial Sloan Kettering gave me a false sense of confidence. Her situation seemed so much less dangerous than all of the people in the waiting room. The doctor made us believe that this was "not a big deal at all". I am sorry for rambling on. If anyone had any advice for me, I'd love to hear it.

Denise,
you raise very good questions. I will do my best to answer them so they make sense.
First off, cancer staging and diagnosis is a complicated thing and oftentimes it can't be correctly staged until either a biopsy or resection and subsequent pathological exam of the tissues is performed. Typically what they mean by "clear margins" is that they have a centimeter, at least, of clear, cancer free tissue. Tumors have tentacles, much like an octopus, so it is vital to have clean margins. 3 weeks does seem like a long time to get a pathology report and a consult from the doctor, but consider that most of us, even fast tracked, took 4-6 weeks from Dx to start of Tx. See this link for the difficulties and complexities of this particular and rare form of cancer:

http://www.oralcancerfoundation.org/facts/rare/mc/index.htm

Here is another link further demonstrating the complexities of MEC:

http://www.thedoctorsdoctor.com/Diseases/mucoepidermoid_ca.htm

Lymph nodes: They are fairly straight forward to palpate - if they are cancerous they will be enlarged, firm and typically have an almond shape to them.

Pet Scan issue: A PET scan at this point would present many false positives due to the healing going on.

You are fortunate to be at MSK with such a rare form of cancer. They are the highest rated Comprehensive Cancer Center in the US and probably the world.

Gary,

Thank you for responding with the information. I have to say, you definately put my mind a bit at ease regarding MSK. I am new to this and I guess I expect the results to be like a blood test. You know, 3 days and you have your answer. So much of this is up in the air. One day you feel happy, the next you are shattered. It is definately a roller coaster ride.

I had read the info from the one site but it was good to read again. I understand much more of it now. The other site was very informative as well.

Thanks again