Bilateral neck swelling -near sternomastoid muscle

[dawnjburns70]

Hi
I am a 41 year old female who has had bilateral swelling (started on left side in Feb 2011) which is now on both sides and very prominent.  I've seen my PCP who is stumped and did a CT scan which showed scattered lymph nodes but said could not verify any adenopathy by CT standards.  

Is there anything that may cause this on both sides?  I have not injured or strained my neck recently and it does not hurt to move my neck nor do the areas present any pain when touched/palpated.  What else could cause this?  

My doctor mentioned scleroderma (as I have been diagnosed with UCTD ) but said that frequently causes skin tightening.  The skin does feel tight but it's swollen.  

Past symptoms include fatigue, muscle/joint pain and my typical symptoms associated with UCTD.  I also have a past history of lymphadenopathy and had 1 biopsy and just learned that Hodgkin's was never ruled out so I am being referred to hematology in a month or so.  

[Ken_PA]

Well, if they are not symmetrical that unfortunately tends against infection.

"correlation with morphologic examination of tissue sections"   A normal node has an internal structure that can easily be seen. As an analogy, if you look at a slice of a tomato, you can see its structure - it has chambers and ribs and so forth. But cancer cells take over a node and eventually replace all the normal cells. It becomes all the same, like a slice of a potato. The structure is wiped out. "Morphology" = structure.

I would guess they could just examine your previous biopsy samples. Someone who looked only at cells is saying that somebody should also look at a whole slice to see its structure - no new biopsy is necessarily needed. That's what I'd ask for right now. Then the hema can also later evaluate those results.

I suppose another possibility is an unusual drug reaction, especially of you've not been long on them. OTOH, if it's been years then you'd think maybe of the Plaquenil's causing lymphoma, which is talked about.

But overall I'd guess that the hema will immediately order a biopsy of one of the enlarged neck nodes (unless they are in spots that are dangerous to cut into). That's what I'd push for - not a CT. If the biopsy comes out negative, then I'd next think of your autoimmunity acting in an atypical way.

(Biopsy of a seemingly normal node would be useless.)

Meanwhile, if your UCTD doesn't typically account for your node symptoms, then I think you are very right in pushing for answers and not just letting things sit.

[dawnjburns70]

Hi Ken
Thank you.  The one side of my neck it is more in the anterior side??? I think i have this right as this was my doctor's analysis but the other side is more posterior?  It first was on the left side for several months , I'd say 4 months, then the last 2 months it went to the right side as well.  My doctor at first asked if I hurt my neck and I told her no nothing recently, no infections especially none in the upper respiratory , throat, ears etc.

It sounds like you know a great deal about this and thank you for your support and feedback.  

My biopsy just said that they recommended correlation with morphologic examination of tissue sections??? I'm interpreting that to mean that there should have been another biopsy of another node, which was never done back then and I'm trying to figure out why as I was going by what my doctor's, surgeon and PCP said which was all was fine.  

Can they biopsy an area of this even if it is not showing as swollen lymph nodes??? Or can they biopsy a normal sized node?

Last question, should I have another CT scan as the other one is 3 months old now?

Thanks again

[Ken_PA]

Hi, I'd think that if both sides (your submandibular nodes) are the same size (and shape) then that tends a lot toward being reactive - since cancer would not likely be symmetrical. Being hard might tend toward them being fibrotic (scar tissue from internal damage).

I know that steroids result in increased leukocyte numbers, but their decreased activity accounts for the immune suppression. So nodes can maybe still swell as they fill with immune cells. Maybe the immune suppression resulted in an infection.

If HD but not NHL was suspected, then I'd guess they saw something on slides that resembled Reed-Steinberg cells - but the cells weren't definitively RS. Maybe they were just giant sized and not HD cells.

[dawnjburns70]

Hi Mochadelicious
Thanks for the reply.  Previously (it was early 2009) I had lymphadenopathy all over, they biopsied 1 lymph node but the pathology report (which I just learned) said they never ruled out hodgkin's and they recommended another biopsy be performed back then! I never looked at it as I went by the doctor's (2 opinions) that they felt everything was fine.

Just a few months ago I had a ct scan which showed lymph nodes but they said by CT standards looks to be normal.  

I believe my doctor is trying to get an MRI so that the soft tissue would show up.  No pet scan ever.  Both sides are very prominent and you can feel how hard and swollen both sides are and can actually see the lumps if I turn my neck to either side. I'm wondering if there may be swollen nodes somewhere else and this is reactive ???

I have a connective tissue disease and take steroids, immuran and plaquenil which should be suppressing my immune system and the steroids I would think would be controlling any inflammatory response so I'm not certain this is swelling at this point or due to inflammation.  Steroids should have reduced it by now and the other meds should be controlling an immune response too???

For these reasons I am worried.  I am scheduled for a hematologist in a few weeks and a ENT doctor in a few weeks as well.

I read online that so many people had hodgkins'/lymphoma and their initial biopsies missed it which bothers me.  I know folks with autoimmune diseases are more prone to cancers and in particular lymphomas.  

Thanks so much for responding to me and any help is appreciated!

[Mochadelicious]

Hi dawnjburns70,
Welcome to this forum.  It sounds like you have a generalized swelling on both sides of your neck but can't feel any individual lymph nodes?  Did they previously biopsy a node in your neck and what were they looking for?  Was this recent?  Sorry, lots of questions.    

I'm not a doctor so I don't know what UCTD is.  Did your doctor mention doing a PET scan on you?  This would light up any areas that are malignant.  Of course biopsy is the most definative way of knowing if you have cancer, but doctors don't usually like to do that unless they are highly suspicious.