Persistant Lymphadenopathy

[Lauren42]

In 2008 I was involved in a car accident and required a CAT scan to rule out an abdominal bleed.  The radiologist did not find a bleed but informed me to follow up with an oncologist due to concern for Lymphoma.  I followed up with the oncologist I work with.  She ordered a PET/CT which lit up from my neck to my pelvis (highest SUV was on my decending aorta node at 13.1!)  The doctor told me I would have to have it biopsied and that I probably had lymphoma.  I had a fine needle aspirate of the node, which came back benign.  On my 3 month follow up CT I then had 3 nodules in my lungs, and increased size of all of my nodes.  They again believed I had lymphoma, and 2 lymph nodes were completely removed from my groin for an accurate diagnosis.  This was again negative.  I have been tested many times for things like HIV, cat scratch disease, autoimmune diseases, infectious diseases. They followed my labs every 3 months for the last 2 years and everything is always stone cold normal while all of my repeat scans continue to show enlarging lymph nodes.  Last month I had a repeat PET/CT which again showed very high SUV numbers (6-10.5 above and below my diaphragm).   They told me again they were very concerned about lymphoma.  I had a node taken from my armpit that the surgeon said was the size of a lemon, as well as 4 nodes taken from my groin which were smaller but very hard.  AGAIN, my biopsy is benign.  At this point I am concerend to continue to be exposed to radiation. I have seen 3 oncologists, and have had 2 different pathologists review my biopsies.  Has anyone ever experienced anything like this? I don't know where to turn at this point and when to say enough is enough.  

[Dexter12]

Im sorry to hear about what you have been thru and the fear along. Have they done a COMEPLETE check for hormones? I have Acromegaly and went thru similar. Have them check IGI F Growth hormone, and the whole works.

good luck!

[GeezLouize75]

Good Luck and I don't blame you for being concerned about exposure to radiation.  Your fears are understandable.  I hope you find the answers to your questions.  Take care and God Bless.