Thank you for ur input! I have seen from other post you seem to be very knowledgable. I saw a surgeon a year ago Bc my onc suggested excision biopsy but the surgeon (only does oncology of neck head and chest) said he felt we should just watch Bc biggest lymphnode was only 1.6 cm and I would have a visible nasty scar and I'm young. However last week my pcp said it's time for biopsy now so I have apt in 2 weeks to see surgeon again. I believe they did blood smear with flow cytometry test last year and all it showed was granulcytopenia 77% lymphocytes. Which wasn't consistent with cbc, I know my bone marrow aspiration said something about the difference in size of rbc I'm gonna get them to fax me a copy of it. Also I didn't clarify but since iron transfusion I have been anemic per rbc it's always low side of normal range but my mchc is low and rdw high. As far crp it goes up and down last year it was a little high then normal then in oct it was 4.86 (0-.3) then two weeks later down to .6 so idk what that means but I was I'll in oct when it was taken. When I saw pcp last week they took13 tubes blood and she's re ordered every test again. My esr test is back and it's 15(0-20) last time it was 20. The fna showed possible excessive lambda but too little sample to be definite have u heard of this? Also the ultra sound saying hypoechoic rim and hyperchoic helium do you know what this means? Also the ct scan saying stable increased lobulated density of anterior mediastinum under findings it says impression residual disease vs thymic tissue have u heard of this? I just emailed my pcp about testing for castlemans awaiting her reply now. Also so etime when I'm very tired my legs give our and I fall my dr though maybe neurological or maybe just weakness but she's doing lyme test at my request but doesn't seem to think that's it. Again thank u for ur help
"autoimmune hemolytic anemia"
that means a person's own immune system is destroying their red blood cells
Castleman's Disease centers around the immune system going haywire and secreting lots of the chemicals (called cytokines) that get the immune system overly active. It is *not* cancer.
I can help you look into this, if you like.
You do seem to possibly match up with the 'Multicentric" type of Castleman's.
http://www.castlemans.org/about
which includes autoimmune hemolytic anemia and enlarged spleen.
So I'd put on hold the excisional biopsy just for the moment, and instead demand an immediate blood test for the cytokine called IL-6. If your IL-6 is high, that points to (but doesn't prove) Castleman's.
Have you had the blood tests called ESR and CRP already?
You can possibly also ask for your FNA biopsy sample to be tested for the virus called HHV-8.
Hi, here is what seems to most tend *against* lymphoma:
you have severe anemia. Red blood cells can be low because of either
a) abnormally low production of cells
or
b) abnormal destruction of cells
Your bone marrow biopsy showed no cancer cells in the bone marrow. (Lymphoma can cause anemia when the lymphoma cells invade the marrow and crowd out the good cells that produce red blood cells.) So it seems that something is destroying your red blood cells - possibly some odd immune system condition.
Did you have a 'blood smear' done? They can get clues if any red blood cells are oddly shaped,
Your sonogram seems to be inconclusive.
So it sure seems that you should be having an excisional biopsy. Once they can directly examine cells inside a node, they can rule out lymphoma and also get clues as to what is causing the problems. The biopsy should be able to diagnose Castleman's disease, and the pathologist has to deliberately look for it.
Whatever you have is unusual.