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20880104 tn?1564505726

30yo Female, 5 palpable nodes in neck, swelling above collar bone

Last month I was diagnosed with Idiopathic Intracranial Hypertension. During scans, it showed I had a small mass behind my sinuses, so I was sent to an ENT. The ENT was worried about the nodes and swelling above my collarbone, so he sent me for a STAT CT scan. The scan came back 'normal' with no sign of masses or lymphadenopathy. The first node popped up about  1 year ago, PCP gave me antibiotics and told me to watch it. Then, 6 months ago, a second one popped up, I took more antibiotics and was told to watch it. 8 weeks ago, 3 more popped up, and the swelling above the collar bone. The ENT doesn't seemed worried about the small mass behind my sinus', and doesn't seem worried about my nodes since the CT scan said they looked normal. I am on Cosentyx for Psoriasis and Psoriatic arthritis, but have never had any issues in the past.
I've lost 12 pounds in the last 3 weeks, and have soaking night sweats (but I'm also in surgical menopause). So, I'm not sure where to go from here, but something just isn't sitting well with me.
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1081992 tn?1389903637
COMMUNITY LEADER
Hi, first off there isn't much reason to think of lymphoma. If you post the CT report, we could go over that. (Btw, enlarged nodes above the collarbone can be a worrying sign of cancer metastasis from inside the abdomen or chest, but the CT would have ruled that out, too.)

"...something just isn't sitting well with me."

Bravo to you on your intuitive perception on that. Here is what I suggest: you have autoimmunity, which means you should suspect your immune system whenever anything strange occurs (like unusual cysts).

The Idiopathic Intracranial Hypertension? From what I've seen, whenever any condition is currently described as idiopathic/unexplained-cause, it usually ends up being found to be immune-caused. The immune system can do many mysterious things, as you are very likely aware.

Do you happen to have stretchy skin, very flexible joints, get dizzy when standing, or a lot of other odd symptoms? I ask because a mystery condition called Ehlers Danlos Syndrome is associated with IIH.

Here are some others:
https://www.ehlers-danlos.com/2017-eds-classification-non-experts/neurological-spinal-manifestations-ehlers-danlos-syndromes/

Your enlarged nodes might be from suppressed immunity via Cosentyx. Or it might be some odd immune system effect. Or both.

It was very helpful that your post was so detailed and organized.

Helpful - 0
1 Comments
Hi Ken, They unfortunately didn't include an abdominal or Chest CT, only imaged the soft tissue of the neck.
I don't have stretchy skin or flexible joints. I do get dizzy with standing, which they've said is part of IIH.

I tend to over research and freak myself out. I read about Lymphoma being misdiagnosed as IIH, which they later learned that Lymphoma cells had infiltrated the optic nerves. That is incredibly rare, and I've only read of 4 confirmed cases of that actually happening. I just thought it was so weird that I was diagnosed with IIH, all while dealing with these swollen nodes, night sweats & weight loss. But the kicker is, it can also be tied to my autoimmune puzzle as well.

I, unfortunately, always think cancer when something pops up. My husband is a lymphoma survivor, which makes me very aware of what goes on with my own body, since we were so blindsided by his diagnosis.

I think what worries me most is these nodes are fixed and not mobile. Normally, the nodes I usually get are easy to move around. These most recent ones are not.
1081992 tn?1389903637
COMMUNITY LEADER
Here's an interesting sidelight: as you know, the inflammation from psoriasis also makes sufferers more likely to eventually have a heart attack. But your drug seems to remove that extra risk.

https://academic.oup.com/eurheartj/article/40/21/1670/5505896

Biologic therapy to treat Psoriasis: A Dual Benefit?   June 2019

"...patients treated with biologic agents had improvement in total and non-calcified coronary plaque burden... exploratory analyses revealed that the change in coronary plaque burden in the biologic group was driven by those on anti-interleukin 17 treatment"

Cosentyx is anti-IL17, but Humira is not. You probably know all that.

Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
While it's true that in the average person, a fixed node tends more to cancer than to not-cancer, that's probably not so with your inflammatory background.

The mechanism for fixed nodes in benign conditions? I haven't seen that described anywhere, but I'd guess that it'd be the usual: inflammation which leads to fibrosis.

But cancer grows through the enclosing node capsule, like grass growing through a sidewalk. If your nodes are not very large, then that's very unlikely. That's another reason to go over the CT report.


If you are very worried still, I'd ask for a sonogram. The sono can tell more than a CT. E.g., on grayscale there should be normal internal architecture, and on Doppler no new blood vessels.


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