Possible indolent lymphoma? Help please

[Veronicahazel2]

I'm gonna sumerize this as briefly as possible and I'm going to say on front end I have been to several drs including oncologist who are following me aggressively Bc of possible cancer. I'm not one of those ppl who feel a lump are just in panic mode posting. Here goes... I'm 26 female I had a baby 18 months ago I had a rough pregnancy and during second half was discovered I have severe anemia so bad I was hospitalized and nothing seemed to help it. During second half of pregnancy I started to develop horrible drenchung night sweats which I attributed to pregnancy and a couple swollen nodes. I just let it go then after  my daughter was born I felt like I got hit by a bus so tired 24/7 I ached everywhere the night sweats just got worse terrible pain in left side more swollen nodes. My gyn said it was hormones going back to normal. Two months later I go to gp she did cbc severely anemic still said that was it and made me feel nuts. Everything just kept getting worse so I got a second opinion now 4 months post delivery, internalist said my side hurt Bc my speen was swollen she did full work up and I did 7 rounds antibiotics total even though I had no obvious infection. I was tested for every auto disease and infection al neg. I have high blood protein but 6-8 months with several nodes still big she sent for biopsy fna ( I know bad test) said they didn't get enough tissue to be sure but looked like excessive Lambda ultra sound said of the one they took it from (really two were matted there 1.3 sm each in posterior cervical area) hypoechoic rim but hyperchoic helium. Pathology suggested follow up so my dr sent me to hemo onc he said the area they are in is worry some they re did cts and blood did a iron transfusion. The dr said he suspected indolent lymphoma and did bond marrow asp which was good but showed difference in size of rbc. He said my igm protein was high  but not myloma high but def abnormal and I had granulcytopenia in flow test. He said every 4 months he follows and scans me fast forward year later to now still have same swollen nodes night sweats fatigue side pain and now bladder fistula (prob unrelated) I had full gi work up nothing but strange inflamation in ilieum but no gi disease (had geno test). Had my scan last week my spleen has grown 1 cm from last scan now 14.5 (u can see from looking at my stomach) however so stones it gets even bigger (my dr has seen it) but always palpable and swollen. And scan said "again several stable shotty nodes seen in nevk region" and chest said stable but increased lobulated density of anterior superior mediastinum and two 2.1 cm low density ovoid structures in pelvic wall needs ultra sound to rule out necrotic nodes. Spleen more enlarged from last scan. My internalist has ordered full blood work up again Bc she said this is not normal and could be indolent lymphoma. Esp given spleen issues and location of nodes. Anyone with similar experiences or know what to make of this? Please ? Also on my onc paper work under diagnosis I saw term inc. castlemans disease does anyone know anything about castlemans disease?

[Veronicahazel2]

Undate: bladder surgery showed edema and healing fistula (from antiobiotics) between bladder colon. Nothing else remarkable, however surgeon said cervix  and uturus were grossly abnormal in appearence I see Gyno oncologist next week. However what I thought was cyclic in cbc is now chronic last 11 cbc show high lymphocyte percentange low nuetrophil percentage but the absolute numbers are normal with lymphocyte absolute being higher then neutrophil. What does it mean if percentage is chronically high but not absolutes. Is ur normal to have more lymphocytes that neutrophils chronically? What could this indicate?

[Ken_PA]

Eosinopenia? I'd never heard of that actually happening. This paper http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2447615/ says it might be from the eosinophils moving to a site of infection and therefore out of circulation.

I've also never heard of lymphoma creating the *cyclic* neutropenia that you have.  A B-cell lymphoma can certainly create antibodies that attack and destroy other blood cells, but I haven't heard of that being cyclical.

Your marrow biopsy showed abnormal red cells, but no cancer cells. Your node from the FNA showed very low cellularity but no cancer cells.

These things offer some hope that you don't have cancer. Maybe your new hematologist can make sense of all of that.

[Veronicahazel2]

Oh ok also I I was comparing my blood work from last week three drs took it and hight lymph % low neutriphil % but both absolute in normal range but zero esobophils percent and absolute which is abnormal. Any thoughts?

[Ken_PA]

A PET scan is typically done after you already know that a person has cancer and you want to find out where else it might have spread. It shows incerased metabolic activity but doesn't tell *why* there is increased metabolic activity - e.g. cancer or infection.

Another option is to remove the node that is the most suspicious and yet is easy and safe to get at - then examine whatever is in there.

[Veronicahazel2]

Yes it is I read that form those women have diff kind of fistula a though most caused my child birth and cause gas like normal fistulas mine was found on ct with no symptoms except infections caused but the decal stuff in bladder. Your right though the bladder biopsy will hopefully tell us something my pcp and gi dr want a gen surgeon in there to biopsy everything and remove several nodes but the uro surgeon doesn't want anyone in there too so I suspect I'll have that surgery right after this one , I don't understand why they just won't do a pet scan. I mean that will tell for sure if there's cancer right?

[Ken_PA]

I'd ask on the Women's heath group, just repost your words from the cervical group but use a descriptive title, something like "fistula, endocervical canal, enlarged nodes"

Or maybe you should just take time off for now and conserve your mental and emotional resources for Wednesday. (I just typed out a whole lot of speculation but in the end that's non-productive guesswork so I'll delete it.)

I'm assuming that your biopsy is on the bladder spot. That should tell a lot and solve the mystery.