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.
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.
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