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?

[Ken_PA]

My father had Mantle Cell lymphoma. I took care of him for two years and had acquired some knowledge. So one day I stopped here and decided to reply to some questions. That was six years ago - time flew.

Btw, your "strange inflammation in ilieum" is probably also Castleman's. The whole digestive tract has what is called lymphoid tissue -- and the cells we are talking about (plasma cells and B-cells and T-cells) are what make up lymphoid tissue. They are lymphocytes.

If you get the IL-6 blood test (I hope you do ASAP), you can ask that a copy of the results gets mailed directly to you by the lab. That way you don't have to wait to know what it says. The waiting can be terrible, right?

[Veronicahazel2]

Oh I most def will I hate when I read these post but then u never get the outcome! Do you mind me asking
What kind of lymphoma you have or had? Is your story posted on here?

[Ken_PA]

"shotty nodes" (a group of small ones like buckshot) can be from various causes

"matted" (attached together) is usually a tendency to lymphoma but in this case I think that the highly inflammatory Castleman's can also create the fibrous tissue ot connect nodes together

I've seen sono reports and journal articles mention the *presence* of the hilum (which is a very good sign). I'm guessing that hyperechoic means the same thing. As for the hypoechoic rim? I don't know. I would guess that once a cancer has grown past the boundary of the nod, then the rim would not be seen anymore.

ANA? I don't know.

Sorry for too many questions? No, not at all  :)  But I hope you make sure to tell how everything works out for you.

[Veronicahazel2]

Oh and also I read most ppl with castlemans have positive ana I have a negative one but I know every case is individual

[Veronicahazel2]

Also do you know what to make of "again seen are sever stable shotty nodes" under head portion of ct, also I was gonna ask the three biggest nodes I have are all in posterior cervical area and two are matted I guess Bc there connected and long and thin feeling is there any significance to that? And last. Question I have read u say stuff about helium on here do u know what hypoechoic rim and hyperchoic helium mean? Thanks in advance sry for all the questions!

[Veronicahazel2]

I agree this does seemto fit castlemans more! I'm hoping they will further investigate this! I just can't stand watching and waiting mean while my quality of life is horrible Bc I feel aweful all the time.