Hello Everyone! I have been reading these boards for a couple of weeks now and really think this forum is great. I have realized that much of what we go through is shared and we are not alone. It is very comforting. I also wanted to extend a heartfelt prayer to all of you either suffering with lymphoma or waiting for results. I understand the process and I wish everyone the best of luck for the healthiest outcome possible!!!
My question is - does anyone know anything about the correlation between lupus/sjogrens overlap and lymphoma? I was recently (in June) diagnosed with possibly having a connective tissue disease (Lupus/Sjogrens overlap). I presented with debilitating joint pain, fevers, protein in my urine, and swollen glands in my neck. My GP ran some tests and found my sed rate was high, ANA was positive (1:640 speckled), RA factor positive. He then referred me to a Rheumatologist for further evaluation. She is great – took further tests – and found I had low WBC (not sure of the number) and some elevated proteins in my blood. She seemed to think it was related to the connective tissue disease, but referred me to a hematologist just to rule out any other possibilities. The hematologist did further tests and suggested that I go for a CT Scan (I have told her of my history with swollen glands) to rule out Lymphoma. I had the CT scan done and they found two lymph nodes enlarged (1.4 CM) one of which is deep in my chest and the other deep behind my collarbone I think on the right side. Should the fact that these areas were found be alarming or worrisome for lymphoma? Fortunately the blood work she did came back fine with the exception of the EBV – that was slightly elevated – which she said could be due to the fact that I have had mono twice - once in high school and again about 3 years ago. She (hematologist) said that unfortunately she could not entirely rule out Lymphoma, but she also did not seem alarmed. She suggested either a biopsy (which she said would be pretty invasive) or just wait 3 months and see what happens. She strongly suggested the wait and see approach. I have to say that she really did not seem alarmed and felt that it was probably nothing, but that she really could not ignore it either. I have this second CT scan scheduled for the end of October. So I still have to wait for about 4 weeks. I have to say that this has been an absolutely harrowing experience. I am very happily married with two young kids (son is 18 months and daughter is 4 ½) and just the thought of potentially having something – or not being there for my children is really weighing on my brain. I am having trouble focusing for I am thinking about it a lot and am trying desperately not to jump the gun. I know this process is completely testing my patience level – and I feel as if the level is slowly dwindling. Does anyone else feel this way? I know I probably have no reason to worry, for swollen glands (lymphadenopathy) is common I think in lupus/sjogrens, but I also know that with Sjogrens your risk level is slightly higher for lymphoma. Am I just being paranoid?!! Thanks for taking the time to read this “novel” and any advice would be great!

JL,
you sound like a wonderful woman and wonderful mother who has every right to be in fear. the most sensible people can find this alarming. how can I tell you not to worry?
especially since you feel the dr is not alarmed. waiting a few more weeks wouldn't hurt if you even did have lymphoma. If they're still there after the 4 weeks are up, I'd definetly make it a point to get a biopsy. whether they've grown or not.
they need to rule out the possiblity.
you have a great team of drs it sounds. I hope that the weeks fly by for you. I remember distinctly how worried I was about my little ones when we discovered my node. all the waiting. first take antibiotics, wait to see if they go away, then getting authorization from insurance co. for biopsy.
finally get the biopsy peformed and then you have to wait for the results.

I would suggest that when you get the biopsy performed to have it tested twice. and from a seperate lab. Pathology is a difficult job and sometimes the 1st dr doesn't see what the 2nd one see's. it takes longer but is well worth the wait. I learned this thru my process and learned this thru others experiences who are diagnosed with lymphoma's.

I'm glad you found us here, and write as much as your heart desires.
that's what this forum is for. to help eachother out.
welcome,

sincerely,
Linda

Linda-
Thank you very much for your kind words and advice. I already feel a little more at ease. It really helps to get these emotions off my chest. My husband is very supportive, but he really does not understand and unloading on my family will only freak them out. So this forum is very theraputic. Anyway how are you doing? I hope all is going well with you. Write back when you get a moment.
Thanks again,
Jen