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]

Thank you for the link! No I think her pregnancies were normal, she died from gi complications. She had a dr mess up during a surgery for stomach ulcers and paralyse her stomach then it just spiraled from there. I don't believe there was any bleeding before having baby but hard to be sure, just very confusing as to what can causes spleen and lymphnode enlargement and fistula. My drs say only cancer makes sense then the UA I have had show blood and mucus which also has me alarmed. There are many cancers of abdominal area that can cause fistula but only lymphoma can cause the nodes and spleen. I'm hopeful the surgery wed tells us something Bc I'm starting to feel hopeless that will ever figure it out!

[Ken_PA]

You might get something useful about the fistula from here:
http://www.medhelp.org/posts/Womens-Health/Vaginal-Gas-and-Fistula/show/27182

It's a long thread but you should be able to quickly bypass all the comments that are irrelevant to you.

Maybe your main problem existed before the pregnancy, was then greatly exacerbated by the pregnancy and went downhill from there. That Women's Health group might be the best place to try to find any similar experiences.

Did your mother have difficult pregnancies? What did she die from?

Also, is it possible that you have had periodic bleeding that was sufficient to cause severe anemia? It didn't sound like that was true in your past experience, until recently. Is it possible you had hidden bleeding?

[Ken_PA]

I'm sorry, I don't know much about any of that. Here is the cervical cancer group to ask about the endocervical canal MRI: http://www.medhelp.org/forums/Cervical-Cancer/show/350

I'm purely guessing that 'increased signal' means extra fluid or swelling is there.


Whatever you have might be so rare that no one has considered it. Or you might have two things, which confuses everyone who is looking for a single cause.

Did you travel anyplace exotic? Any opportunity for a strange parasite? Any poisonings? Heavy metals?

The waiting must be terrible for you. Ask the surgeon immediately after the biopsy to give whatever impressions they have from just looking. Sometimes they also do some tests or microscopic evaluation right in the ER, in case they have to do anything additional (like an excision) right then and there.

Sorry I can't be of more help. Please let me know how things turn out for you. Good luck.

[Veronicahazel2]

Ok update
From last  post started having severe pelvic bleeding (not period) and urinating feces. They have thought I had bladder fistula for a few months but I thought unrelated. I saw two new dr this past week, urologist whose from md Anderson and very good did cystoscopy and found a spot on my bladder. Could be small fistula or cancer, was scheduled for immediate surgery next wed for biopsy. It's believe the fistula goes to the colon and is on posterior wall of bladder. I have been told four things cause fistula crohns, endometriosis, inflamatory disease such as lupus and cancer. They know definitively I don't have crohns or endometriosis. My dr did every posdible auto immune test all inflamatory markers were negative. They say chances of this being spontaneous and not cancerous is <5% but they are all confused as to what kind of cancer Bc the spleen and lymphnode involvement. I saw surgeon who specializes in female pelvic cancer he ordered MRI Bc the bleeding and I see him Tuesday my MRI reports said "there is increased signal in endocervical canal" do you know what that means? Spleen still obviously swollen and new swollen node in neck my guess us prob 2-3 cm and growing. I see hematologist Tuesday as well. Also they did urinalysis no infection but mucus and blood present which has been for months. Any ideas?

[Ken_PA]

Because of your family history, it sure looks like you have a rare immune system condition. Not lymphoma. A biopsy might not be called for anymore, not until an immune condition gets diagnosed or ruled out.

Did you have problems since you were very young?

"I do know everytime I have had a bad flare up of my problems I have had high lymphocytes low neutrophils and low blood count  which is inconsistent with infection"
Nope, that is incorrect. Many virus infections behave like that. (I'm not saying that it necessarily is a virus infection.)

It seems there is a test available for the ELANE gene mutation. Did you ask for that?

[Veronicahazel2]

Oh they do capsul endoscopy Bc u can't get to small intestines with reg one or colonoscopy both of which I had 6 months ago. I'm wondering of maybe this cyclic neutropenia isn't the cause of my lymphoma like symptoms I mean I did a lot of research today although it is crazy rare if left untreated into adulthood can mimic lymphoma causing swollen spleen fatigue night sweats fever swollen nodes ulcers of mouth and colon. Now I'm not sure but I do know everytime I have had a bad flare up of my problems I have had high lymphocytes low neutrophils and low blood count  which is inconsistent with infection. I got a calendar and took my blood test and the test with neutropenia fall on 24 day intervals and my daughter is being tested for it Bc dr suspected without knowing anything of my medical issues. I'm still having them investigate castlemans though, and as far as capsule goes I haven't gotten results yet however I do know that it showed gastroperesis which makes sense Bc I puke up I digested food from days earlier so etimes. I'm not sure where this fits in however my mom had gastroperesis but hers was so severe she had a feeding tubs and her stomach removed. Hers was thought to be a result of surgery damaging her vega nerve but now I wonder... Unfortunately she died when I was a kid so I have no way to know specifics. In reference to crp I know when it was high last time I had neutropenia then as we'll..