Supraclavicular 'Space' Nightly Swelling/Lymph not draining?

[amy21]

I've had pain in my left clavicle going back 10 years.  The area is most uncomfortable at night and in the past year, the pain has become unbearable.  It feels like bone pain, sometimes like my collar bone is snapping in two.  The pain wakes me up at night and prevents me from doing normal activities during the day.  In addition to this pain, I also have a problem of swelling (nightly) in the supraclavicular region.  It feels spongy, doesn’t hurt to touch, however, is clearly full of fluid.  The spot gets pretty large every night and seems to go down during the day.

After a normal xray I went to physical therapy at me doc's request.  PT would not see me because she said my supraclavicular lymph nodes were so swollen and my exam did not appear to show any typical orthopedic problem (ie rotator cuff, etc.).  She sent me back to my primary care doctor.  He did a soft tissue MRI which came back normal.  Both tests were 6 months ago.

In Feb I had a full body scan and they found a tumor at my sterno-clavicle.  An oncologist says that the tumor is likely a benign fibroxanthoma (as determined from CT scans).  Wants to do CT scans again in 2 months.  He says that my pain is likely not caused from the tumor but by another condition like RA.  I’ve been referred to a Rhuematologist.  

Question:  should someone be requesting a biopsy of the fluid that backs up every night in my supraclavicular space.  Have you ever heard of anything like this?  Who should I see?   I don't think it's RA as my symptoms aren't consistent (don't have stiffness, swelling in joints, dry eyes, etc.)

[CCF-Neuro-M.D.-PW]

I may not be the best person to answer your question as your problem seems to be outside the realm of neurology and neurosurgery

If the swelling is only at night, I can see how it might be difficult for the doctors to obtain a sample at that time, unless you were already admitted to a hospital for something else.

THere are nerves that pass close to this region to supply the arm, but without symptoms in the arm, they are likely not affected.

Unless the diagnosis is clear on an MRI or CT, a bipsy of the tumor or fluid might be a good idea

Good luck

[amy21]

Thanks.  I did have an MRI of the soft tissue done in the evening when the area was very swollen.  The technician tagged the spot, however, nothing abnormal appeared.  The only note was "can't rule out fatty deposit."  Not sure what that means..

I think I'm going to request a biopsy.  My next visit is with a Rhuematologist.  Would it be appropriate to request that they do the biopsy?

Thanks.