Hey, I'm sorry to be such a bother on this board again, but I can't seem to find an answer to my questions elsewhere. Exactly how accurate is a CT scan? More than that...if I can feel something quite noticeable in my neck, but it doesn't show up on the CT scan, does that mean that it is nothing? My CT scan from a while ago reported multile mildly enlarged bilateral lymph nodes (with well-defined borders and suggested as being reactive in origin), but I feel like I have more than just that on my windpipe, like an actual mass of something. But, yet again, the CT scan shows that other than my swollen lymph nodes, I don't have any other abnormal areas in my neck. If I can noticeably feel something in my neck, shouldn't it show up on the CT scan (with an IV contrast) as abnormal if it is something bad? And I've heard varying responses as to what size will show up on a CT scan...2 mm or 6 mm?

I also thought that I would mention that I am finally meeting with my oncologist on November 16 to schedule an excisional biopsy of one of the nodes. He says that I have no cancer in my head or neck, which I'm assuming means that there is no primary cancer that can be seen on the CT scan, so that's definitely good news, and he assured me that lymphoma also doesn't present this way with bilateral swellings without other nasty symptoms. I think he suggested a biopsy just to make me happy because he knows how anxious and nervous I am about this. His suggested verdict at the moment is a viral infection (which is apparently chronic), due to the fact that I have nodes on both sides of my neck, my WBC is still slightly elevated after 4 months, and blood tests also indicate that I have an inflammation somewhere. I'm just worried because the nodes are kind of hard and painless. But one has grown while the other hasn't, so I find that odd. And the one that hasn't grown literally popped up overnight. Well, I guess I'll find out soon what is going on with me. Thank you everyone, for being so supportive of me, and I wish you the best of luck for your journeys.

Amanda,

I originally found 2 nodes in the left side of my neck. They also were painless. Since I did not fit the profile of cancer my doc, a MO, suggested cat scratch fever and put me on antibioctics. They both shrank 50% in 3 weeks but did not go away. They were later confirmed to be my cancer.

P.S. I was born and raised in Richmond. Left when I was 37. Love that place but I figured I needed to move to Fl to beat the retirement rush. LOL.

Good luck and keep us posted.

I am actually from Pennsylvania, but I'm at VCU for college. =)

I don't think I'm really worried about oral cancer anymore: I've had an oral cancer exam which found nothing suspicious and my CT scans show nothing abnormal other than swollen lymph nodes. Plus I'm 19, so my ENT practically laughed at me when I expressed my concerns in that area.

My oncologist also doesn't think I have cancer, but he offered me the choice of an excisional biopsy so even if it wasn't, I wouldn't have to feel them anymore and be worried. He seems to think that if this does turn out to be cancer, it's going to be lymphoma. But, as I stated in my initial post, I believe that I can feel a mass that is more than just a swollen lymph node (or nodes), but it doesn't show up on the CT scan. So I was wondering if I should assume that even though it doesn't feel normal, perhaps it is? My blood tests indicate an inflammation somewhere, so I thought that maybe what I feel isn't a mass, it's just inflamed tissue near my lymph nodes.

Oh, and apparently my oncologist thinks that if I have swollen lymph nodes on both sides of my neck and no lesion or other mass can be found in my head or neck either by physical examination or by CT scan, than this either has to be lymphoma or an infection, because if I had oral cancer with bilateral node involvement, I would be feeling something other than just nodes right now. And I can only feel two prominent nodes, one on each side of my windpipe. But apparently the swollen ones go from my submental region the whole way to my spinal accessory chain on both sides. They're not overly swollen though- the largest is in my submental region and is 1.2 cm x 6 mm (which means it's oval, and most nodes caused by cancer tend to be round in shape). I guess I'll find out when I get my biopsy what is causing them to be swollen. I'm just afraid they're cancer because they ARE painless, plus they're hard. Well, I'm not sure exactly if they're rock-hard, but they're certainly not soft or rubbery. However, my ENT told me they are mobile, which also basically rules out metastatic cancer because they tend to cause nodes to be fixed (even though I think mine are fixed, the ENT insists they're not). I just don't know- I have signs of infection, lymphoma, and metastatic cancer, so I just don't know what's going on with me anymore. I'm trying to be reassured by the fact that the oncologist clearly said I have no cancer in my head and neck (as evidenced by the CT scan and my previous mouth exams), but then I wonder what kind of a viral infection is going to cause hard, painless nodes for over four months with no other obvious symptoms?

Amanda,

Whew!!! You talk a lot. Just kidding, LOL but I was dizzy after reading your post. First calm down!! Where did you get tested? At VCU? I graduated from there and also got my MS there. Great school.

You can always get another opinion. UVA is another good choice for cancer treatment.(Do the Rams still hate the Cavaliers as much as when I went there?)

Are your parents involved? What are they telling you?

Hi Amanda,
I know a couple kids that attend VCU, they were former cheerleaders of mine and very close friends with my daughter, Kelly. One is Christine Taylor, the other is Justine Blinco. They would be 2nd year students. I know more kids there, just not as well. Hope you are enjoying the school!

David, other than the CT scan and blood work, I haven't actually been tested for anything yet. But a few of my doctors (out of the 5 of the them) are affiliated with VCU/MCV. And I don't think I have enough time to drive to UVA, especially since I haven't been diagnosed with cancer (and we're more against ODU now, it seems). My mom has been involved with this process for its entire length and thinks that I am insane for not listening to what my doctors believe (that I'm fine and just have an unidentified infection). My dad lives in PA so he doesn't really know much of what is going on.

Minniea, I don't know them but I'm a second year student also! And thanks...other than having swollen lymph nodes I am enjoying school so far. =)

Oh, and to clarify, I have seen 5 doctors so far: 2 GP's, 1 oral surgeon, 1 ENT, and 1 oncologist/hematologist. I just find it very hard to believe that every single one of them can think my nodes are nothing if they aren't actually nothing. I have had five opinions, not just one.

Amanda,

It's your body and your life. Keeping asking questions and keep seeking other qualified opinions until you are satisfied.

JMO