no diagnosis yet

[jenimo]

I noticed swelling above my left collarbone x 3 mos ago. I've been very fatigued, night sweats, and occasional severe lower back pain. Strong family history. All labs are ok except slightly elevated sed rate. Had CT of chest today and Dr said it was normal so they want to just watch for now.  No definite lymph nodes felt but I do have a very noticeable swollen area around the left clavicle. Any suggestions on what to do next...or is it possible for this to be early lymphoma even with a normal CT of chest and normal labs?

[Mochadelicious]

I hope you are able to get some answers soon.  Ken has a good point...that a sonogram may be the way to go.  You're probably much more likely to get that approved over a PET or biopsy.  As far as your family history, yes it can play a part, but probably not as much as you'd think.  Research doesn't have a strong hold on what actually causes lymphoma, although they seem to be leaning more towards things you are externally exposed to, like pesticides.  They can't say for sure that if you have family members that have it, that you have a much stronger chance of getting it.  I wish you luck on your persuit.  I hope you stop back by and let us know how you're doing.  

[jenimo]

Thanks for the replies.  The CT was of that area along with the chest.  I'm scared not to keep on perusing because I know something is wrong...I just can't seem to find out what it is.  I will probably go back to my family doc and see if she can help me out more.  Maybe she can schedule a PET scan and I think I would feel more at ease. I've just read too many stories where labs/ct scans were normal then months later they were diagnosed.  I've lost all grandparents to cancer (one with leukemia), my father died early with pancreatic CA, my mom is in remission now and have an aunt with lymphoma. I'm 36 and just want to try to find out what it is EARLY.

[Ken_PA]

I think Mocha's last paragraph sums it up very well, about being hard to know.

With your Fx, I'd maybe push for a sonogram of the affected area. It's cheaper and so more likely to be approved. Also, it is surprising that for some situations, a sonogram might actually be superior to the much more expensive alternatives.

And yes, a normal CBC is not proof of absence of lymphoma.

You can look through here:
https://ixquick.com/do/metasearch.pl?query=clavicle+sentinel+node

to see what might or might not apply to you regarding sentinel nodes, though you did not say that it was very hard..

Also, I'd guess their thinking in your scan was related to this:
https://secure.wikimedia.org/wikipedia/en/wiki/Virchow%27s_node

but they didn't explicitly investigate your swollen area with the scan - hence a sono might be in order, because of your Fx.

[Mochadelicious]

Did the CT include the area of your collar bone?  I would think that if it did, the CT would be able to see the swollen nodes.  If it wasn't swollen nodes, what else could it be?  Something is making it swell.  I do know that you can have normal labs even when you have lymphoma.  I did.

A biopsy is the only way to know for sure if you have lymphoma.  However, you could suggest a PET scan to see if the area around your collar bone is active.  Basically, they inject radioactive sugar that targets the cancer cells (if any).  Then you have a scan to see if any areas light up.  You could even ask to see an oncologist if you continue to hit a brick wall.  

It's hard to know when you should continue persuing an answer and when you should stop, but if you still have that little voice in your head that something just isn't right, you should act on it and keep seeking answers.