Chronic swollen lymph node... many tests with little explanation of strange symptoms

[mhomerjr]

I have had some weird things happening in a year. I have seen a ton of doctors...  About a year and a half ago, I experienced something similar with a node on the right preocciptal side of neck. I began experiencing the fevers, sweats, weight loss, tinnitus, and floaters. I was in the ER three times and admitted twice with ZERO outcome of a diagnosis other than unknown. They ran a variety of various bloodwork for autoimmune and viral tests like Epstein-Barr, Julien-Barait, lupus, Lyme, Brucellosis, etc. all were negative. It was a CT of my neck that revealed the thyroid nodules. Things seemed to calm down for a slight period, but then the summer hit and a cervical lymph node on my left side has slowly become reactive. My CBC bloodwork has supposedly come back normal but my WBC counts have come back somewhat low.

The level 5 neck node (posterior triangle node) that is reactive now is painless, except I have been experiencing a feeling of dysphagia or tightness around my throat and where the lymph node is located... I haven't been losing a ton of weight this time, but I have been more tired. Further, I am concerned because I believe this chain drains my thyroid, and I have been concerned about developing thyroid cancer due to the numerous nodules I have in my thyroid. The dysphagia has been very unsettling and is a constant feeling. My doctor has told me that it is idiopathic (termed "globus") and stress related and has prescribed Xanax, but it doesn't help. The node measures 1.1x0.4x0.6 cm, and appeared to have normal flow in October when it was ultrasounded. Since then, the node feel that it has gotten larger and my doctor feels that it is still no concern and scheduled another ultrasound to look tomorrow. He did offer to excise the node with full anesthesia, but refuses FNA despite it being just under the skin surface.

Should I be concerned for lymphoma? Can the cervical lymph nodes be that large and normal in the neck despite the cutoff size of 0.7cm^3? I am really concerned because this thing has been swollen for a long time, and my doctors have been pretty condescending.

[mhomerjr]

Ken,

Thank you very much for your answers. With regard to Fx history, are you referring to family history? For family history, my mother's side - my great grandfather died of lung and bone cancer. He smoked for years, and the cancer metastasized to his bones. My dad's side - my dad's sister had breast cancer, and thank God, she has been clear for 10 years this past October. As far as other history, my family's health risks are high blood pressure, diabetes, and heart problems. My mom's dad died of a heart defect at 36 years old.

I am strongly considering scheduling the biospy, but like you said it will only rule out lymphoma, but the other question is "what the hell is going on?" I have a friend from church who is a radiologist at the facility and he looked at the images and he doesn't seem too concerned, but recommended reimaging after 6 months. He felt the CT may be overkill.

My fears are waiting too long and the uncertainty of the underlying issue if there truly is a disease lingering in my body. My wife sees me going down this spiral mentally and how scared I am, and it is horrible to live life like this. I am only 30, and I have a 3 year old girl and her to take care of. I guess my rambling is to vent, but I really appreciate your ear. I wish I could meet you in person to thank you for how receptive you have been.

I have an appointment for a 2nd opinion on Monday. The doctor is another ENT that also specializes in thyroid issues. My previous endocrinologist dropped all insurances from his practice, and I would have to self file as an out-of-network to see him... I will post what he has recommended for further treatment. I am anticipating that he would rather wait for an invasive procedure.

Thanks, Ken.

-Mike

[Ken_PA]

As a shot in the dark, I'd try ordinary Benadryl and see if anything changes. Not on workdays, though. Mark the node with ink and see if it gets smaller over two days. Just a shot in the dark.

(Btw many people with CFS decided to tough their way through it with exercise etc at first and only dug a deeper hole.)

[Ken_PA]

"With regard to the lymphopenia, do the low lymphocytes and RBC suggest something bad? "

The worst case is when a blood cancer infiltrates the marrow and crowds out normal production of blood cells (though usually it's pancytopenia). But there are other causes that produce the same result, even having a virus. There is also aplastic anemia.  Autoimmunity can destroy cells in circulation or attack the hematopoietic stem cells in the marrow. There is such as thing as bone marrow biopsy, done with a local anesthetic bjt your counts aren't low enough to do that, I'd guess. But if cancer were found in the marrow then it would likely have originated in the neck nodes.

What you say about biopsies is entirely correct. So if your main aim is to rule out lymphoma, then you should get the excisional biopsy. (But even then the results might come back as being uncertain about what some of the suspicious cells are.)

Do you have an Fx of cancer?

"bilateral" does not imply symmetry, merely being on both sides. Cancer wouldn't typically spread cross-side like that. Cervical lymphoma is far more likely to go only the same side of neck, and/or axillary and inguinal.

Your right side node has enlarged, but still only up to theoretical maximum for only being reactive.

I'm guessing the node was too deep for the sono to get a good look. (Also being deeper makes for more danger in surgery, especially to nerve or artery.) Here is a surgery being done: https://www.youtube.com/watch?v=g9lzOYtGLic

Maybe a more skilled sono operator elsewhere could do better? (Example, when doing a CIMT sono for atherosclerosis, there is a lot of possible variability and results can vary by operator. In some clinical studies, operators receive special raining beforehand. So seeing a fatty hilum with sono would be ideal, if possibly done by someone else. Just guessing.)

A little girl was in the news last week because she died from a tonsillectomy - so all surgery has catastrophic risk - besides the anesthetic risk you've mentioned.

Reasons to wait: you have alternate causes that are more likely, hinging on an unusual immune system Hx and Fx, and exposure to unusual pathogens from work. Also, no node is super-large, The big left one seems to have plateaued. (The .1 growth cm is in margin of error, I'd think.)

Reasons not to wait: my father had a bump on the  back of his neck that all docs said "don't worry", but it was indeed lymphoma. You never know, without excision.

I'd mentioned FNA if the aim was not investigating for cancer but instead investigating immune causes. E.g. here it's used investigating diffuse inflammatory pseudotumor: http://www.ncbi.nlm.nih.gov/pubmed/2588924    

Excisional biopsy won't miss focal conditions, but FNA can miss (like poking some holes in raisin bread). but FNA won't miss looking for some diffuse condition (cinnamon bread). FNA is done with a local anesthetic.

The med world has been recognizing that they need to use less radiation, some individual docs don;t agree. It seems crazy for a dentist to take x-rays every 6 months without a profound reason. In the 1990s there were actually full-body "yuppie scans", using CT to just look around for any problems. Weird stuff.

Personally, I would and re-sono in 6 months. Scan will likely be the same then, too. But I'd be willfully telling myself that it is benign. Unless there is a strong Fx of cancers.

Glad to be of help, Merry Christmas to you.

[mhomerjr]

Ken,

I received the results of the ultrasound today. Overall, things look brighter, but I am still uncertain as if to whether or not schedule a biopsy. Here are the results below:

-------------------------------------------------------------------------------------------------------------
HISTORY:Palpable foci in left and right thyroid

COMPARISON: 10/17/2013

TECHNIQUE: Target sonographic imaging of the left neck was performed in the sagittal and transverse plane.

FINDINGS: There are bilateral hypoechoic masses in the left and right neck which are well circumscribed. Largest left neck mass measures 1.2 x 0.4 x 0.6 cm. Additional smaller 0.4 x 0.2 x 0.4 cm and 0.7 x 0.2 x 0.5 cm masses are noted in the left neck. Solitary mass in the right neck measures 1.3 x 0.2x 0.9 cm. When compared to the prior exam, findings are similar. The possibility of bilateral soft tissue tissue neck lymph nodes raised. Etiology and significance is uncertain. Consider CT.

IMPRESSION:

Bilateral soft tissue neck solid masses, possibly representing lymph nodes. Further evaluation with post-contrast sock tissue neck CT is recommended.

--------------------------------------------------------------------------------------------------------

Good news is that my thyroid meds have been working in shrinking the nodules. The dimensions of my thyroid lobes have gone down as well as the sizes of the larger nodules that existed in the prior ultrasound. The final impression was STABLE CYSTIC LESIONS THROUGHOUT THE LEFT AND RIGHT THYROID LOBES. NO DOMINANT SOLID MASS. NO SIGNIFICANT CHANGE.

If I am understanding the neck ultrasound correctly, when they state "bilateral" I assume that they are referring to the masses as being bilaterally symmetrical, correct? Further, I had a neck CT done almost two years ago for these issues, and I would really prefer to not undergo such radiation. I have had to have two CTs and a number of xrays in my life for broken bones and sprains (I played hockey, lacrosse, and soccer), and I am worried about all the exposure to radiation. I have even been a bit skeptical on bitewings in my dentist's office because she does them every six months...

All and all, I have had numerous images done of my neck. Last spring the MRI revealed nothing, even in my thyroid. Should I be concerned about these findings? Should I do the biopsy procedure? I am having a difficult time finding peace... I hope I am not coming off as a hypochondriac.

[mhomerjr]

I appreciate you staying in touch with me through this. Unfortunately, the technicians at the radiology office are not allowed to share any information while completing the scan. I did request a doctor that I know read's more thoroughly, personally review my ultrasound scans.

With regard to the lymphopenia, do the low lymphocytes and RBC suggest something bad?

FNA biopsy was a technique that I saw was used for determining if abnormal cells in lymph nodes, but much of the literature and forums I have read is that the technique often results in false-negatives. Further, many of these sites also suggest that excisional biopsy after removing the entire node is more accurate in determining cancers in nodes. Am I correct?

My ENT has offered this service, but because he is calling it a deep cervical node, he wants it to be a full anesthetic surgery where I will be put under. I am trying not to worry about this, but I am also about to relocate to another city for my job, and I will have to find a new treating doctor if I don't deal with this soon.

I should have the report arrive by mail either today or tomorrow, and I will post the results. Thanks, Ken.

- Mike

[Ken_PA]

Rushed typing, might sound disjointed - sorry.