I am a 37 yo female. I have been experiencing random low grade fevers for about 8 years now. Almost always they are accompanied by lymph node swelling and pain. Especially in my neck and arm pits. Sometimes they are accompanied by fatigue, hives, and/or night sweats. I have gone through the gamut of tests with my hematologist/oncologist. In 2005 I had some lymph nodes removed, but unfortunately it was by a breast cancer doc (that is who I saw first since I have a family history of it) and he only did tests to rule out breast cancer. The path report then said chronic hyperplasia. Since then I have had numerous CT scans, ultrasounds, a PET scan last year, and lab tests that are now too many to count. I am negative for Hepatitis, HIV, cat scratch fever, lyme's disease, brucellosis, mono, etc. Most common blood panels have been normal as well (hematology, chemistry, urinalysis). The only things that were on his list of possibilities that we hadn't ruled out were some type of lymphoma or a rare genetic disorder/disease. In November of last year my hem-onc doc decided I should have my tonsils removed since I was getting tonsil stones, plus then he would have lymph tissue to do a full lymphoma panel on. So I timidly agreed. I had heard horror stories of doing this as an adult and my GP was also hesitant. I put my ENT surgeon in contact with my hem-onc so the lymphoma panels could be run. Apparently everything was set. I double checked at my pre-op visit and the ENT said it was good to go. I had the surgery on Dec. 14th, but heard nothing back about results. Figured it must be good news plus it was the holidays. Went for my follow up first week of January and the path report said both tonsils had "Lymphoid follicular hyperplasia". ENT never explained this. It also said a portion of sample was on hold for flow cytometry (the lymphoma panels ordered). So I figured they still needed to run the flow. But two more weeks went by and I hadn't heard anything. Then my ENT called and she seemed very short and anxious. She told me the Pathologist had decided not to run the flow cytometry. When I asked why she said because my tonsils looked normal and there was no indication for further testing. I was very confused. My oncologist had ordered these tests to be done. To make a long story short, a lot of phone calls later I found out they despite what the lab report said (that samples had been put on hold for flow cytometry) they had actually forgotten to prepare my tonsils in saline which is what is needed to do flow. Instead they prepared them all in formalin and just did regular microscopic examination.
So I basically had my tonsils removed and suffered for nothing.
What do I do now????? I am unbelievably stressed by all this...after so many tests and years of worry I still have no answers!!!
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.