Re: Lymphoma? Mystery Illness? Path Lab Mess Up!!!
I am so sorry this has happened to you. Let me make a few suggestions that might help. First of all, if lymph nodes go down or disappear between episodes, it is unlikely cancer. Also, in 8 years, if it was cancer, I would think you would have gotten way worse by now. One of the most common causes for intermittent fever, lymph node enlargement, night sweats and fatigue (in episodes that recur) is an autoimmune disease, perhaps lupus or something similar, and that is nowhere on your list of possibilities. Lupus is a B lymph cell problem which fits with follicular lymphoid hyperplasia. The type of Dr to check this out is a rheumatologist. The pathologist was out of line to discard and not prep the tissue for further testing. You have some grounds to demand the lab pay for additional testing at no charge to you because of this. After seeing a rheum, if lymphoma is still a concern, I would ask the hem/onc Dr to get a pet scan, which will highlight the size and activity of all nodes, both external that you can see and feel and internal that are hidden. The rheum has an arsenal of tests that can be done to rule in or out autoimmune disease, and if all else fails a biopsy can be done from a node that enlarges elsewhere. I would also review yourself all labs you have had and note any abnormals or borderline results. You can post these with their reference ranges if you'd like for comment. Another observation, what goes on in the tonsils, because of chronic infection reaction, may not match what goes on in the other nodes, so it is possible the tonsil tests related to lymphoma wouldn't have shown the answer anyway.