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Lymph nodes everywhere, collarbone included + symptoms?

Posted , 26 users are following.

stephanie221
stephanie221

Hey everyone I'm new here,

I am 20 years old and for a year and a half I have been experiencing symptoms and lymphadenopathy.

I have been to multiple doctors/appointments but no doctor seems to take it serious enough.

It first started with severe lower abdomen pain last year in May which then lead to me getting blood tests and a ovarian ultrasound. Blood test was good and ultrasound showed a 29mm 'complex' cyst (which they weren't bothered about).

After that I'd have multiple blood tests, recent ones showing I'm anemic (low iron and satn).

Also had an abdomen ultrasound which was normal "no sign of abdomen lymphadenopathy"

But ever since the chronic nausea and abdominal pain perisisted everyday til now I've been anxious and read online about lymph nodes, I freaked out as I could feel mine so easily and big ones under my jaw, this year in February I read about collarbone lymph nodes and how dangerous they were if you could feel them (mainly for cancer suspicions). So I felt there and generally didn't feel anything obvious, until I'd shrug my shoulders back and pull the skin to my collarbone then I could feel 2-3 lumps on my left collar and not my right.

But one day I checked under my collarbone and felt something.. And with the slightest touch a obvious lymph node was found! It moved on top of my collarbone and then behind it, but will always come back and rest under my collarbone (infraclavicle area) it was the strangest thing! And it's clearly visible when it slides on my collarbone. And I obviously freaked out and went to the doctors once again.

Again 2 of them shrugged it off and basically said its nothing, even though it's clearly there and I have all these symptoms that I link it to this node.. I've even had one blood test which showed low white blood cells.. I finally prompted one doctor to do an ultrasound so I did, it was so hard for him to get a picture cause it was in an awkward place for a node and every time the wand went on it, it would slide away.

All these symptoms and now back and rib pains, collarbone lymph nodes and anemia makes me think something is going wrong with my body.. sad

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  • alana52792
    alana52792 stephanie221

    Posted

    I have been having the same issue.. I just did a FNA and results came back negative. My endocrine specialist was not happy and she scheduled a full biopsy.. Based off of the impression I got a FNA is pointless because it's not 100%. The area the tissue is taken from can be the area that isn't affected.. I just had the FNA done last week and this week I'm having the full biopsy.. Comforting I must say because this is definitely the way to get a more accurate answer..

    • HeatherP143
      HeatherP143 alana52792

      Posted

      Hi Alana!

      What type of fine needle aspiration did you doctor do? Was it one needle into the lymph node or several? I just completed mine this week and I had seven total needles into one large lymph node in my neck guided by ultrasound.

      My ENT was very upfront about the accuracy rate of the FNA vs a full biopsy, and he said the FNA is usually about 85% accurate. But, he also said if a lymph node is enlarged, they are more than likely to find something in that lymph node that is suspicious.

    • alana52792
      alana52792 HeatherP143

      Posted

      I had the FNA and it was I think one lymph node and three needles. There was several but they went with the largest. Biopsy removed the same one for further testing. 😊Hope this answers your question!

  • HeatherP143
    HeatherP143 stephanie221

    Posted

    I finally met with my ENT after my fine needle biopsy last week to go over my complete results.

    My results showed no signs of lymphoma, or abnormal cells in my lymph node.

    He did say that my lymph node did show some "aggregated" cells and also slightly cloudy lymph fluid, but he said there are so many factors that can cause this - something as simple as allergies and he was not concerned at all.

    He said moving forward to just keep an eye on things, and if a lymph node shows up and continues to grow in size, and is very prominent, to contact him at that point to investigate further. But, he said if my nodes just feel slightly swollen and then go back down and continue in that pattern, he said there is no major concern and my body is likely reacting to something in my environment.

    How is everyone else doing? Any news?

    I'm not sure what my next step is going to be. I pray I start to feel better and I'm hoping with these results, my anxiety will subside a bit. It's been awful.

    • marionuila
      marionuila HeatherP143

      Posted

      Hi Heather, I know this is an old post, but I read your symptoms, and found that you had that strange pain in your collarbone, and it matches with the pain that I have. Mine is around the middle and center of my collarbone, and it is aggravated by moving my arm up and back, also have tense shoulder and neck muscles. Have been like that for 3 weeks, and came literally overnight, and after some stressful weeks.

      I have health anxiety too, and I am scared about the worst.

      If you can describe how your pain was, and how long did you have it, it would be great.

      Thank you.

  • aden6
    aden6 stephanie221

    Posted

    Hello all!!

    It was refreshing to read that everyone's swollen lymph nodes are not caused from anything too serious! For the past three weeks I have had a swollen posterior cervical lymph node, which is causing me great anxiety. I waited a week or so before seeing my GP. And of course he looked at me funny and said "that small thing"...it doesn't feel small to me! Anyways he said this is probably being caused from my allergies, since I have post nasal drip pretty bad, and to follow back with with him in 8 weeks if it is still there But I just don't know if I like that answer. I have an appt with my ENT on Monday, so I am hoping I can have a talk with him. My question is for anyone who would like to answer. Would I be premature to ask for a biopsy or ultrasound....to me bloodwork is a given. I just can't stop messing with it because I am so unsure of what it could be caused from, and I hate that it's giving me so much anxiety, so I sure my dumb butt is making it worse.

  • kyle51583
    kyle51583 stephanie221

    Posted

    hello stephanie, I found the same exact node you describe under your collarbone. It seems to be smalled than a skittle but when I touch it it moves up and over the collarbone and then back down below it once i release my finger. I am going to see the team physician tomorrow, but what did the doctor say about this node?
    • stephanie221
      stephanie221 kyle51583

      Posted

      Hi,

      I've seen 3 different doctors about it and all have not been worried about it. I have done 2 ultrasounds just for my peace of mind and both said it has completely benign features with healthy helium (something like that) in it. My last doctor who gave me the second ultrasound referal didn't even feel the node and said you can get it fine needle biopsied and then when I went there to get it they said it was way too small. So I think if my doctor had felt it she would not have recommended a FNA.

      I actually thought the node was a lot bigger but actually is only 6mm from the ultrasound report.

      But now I'm still worried cause I search up everyday of my symptoms and it's causing me not too sleep so more symptoms arise like headaches, feverish, tired causing me to think those symptoms is from lymphoma.

      Also my last blood tests were off with some things. I had normal ferritin and low iron. But now my recent blood test show high ferritin rolleyes though I was on an iron tablet like a day before but still I read up that high ferritin can be caused my Hodgkin's lymphoma so again I'm worried as heck sad

  • kyle51583
    kyle51583 stephanie221

    Posted

    What did they say it was? The node i have is extremely mobile, and i can move it up over the collarbone, and it always returns to an area below the collarbone. Is that how yours is? its extremely smooth, not hard but not extremely soft, and very mobile.
    • stephanie221
      stephanie221 kyle51583

      Posted

      Yep exactly the same as mine, your description is spot on. When I did record myself moving the node over my collarbone you can actually see it slide back to it resting spot under the collarbone. And it isn't rock hard like a bone but isn't soft either. Btw if you feel it while its on your clavicle bone it will feel harder than it actually is.

  • kyle51583
    kyle51583 stephanie221

    Posted

    yeah! exactly the same with me, it may be the width of my pinky at most! i feel as though touching it will not make it go down. What did the doctors think it was? 
    • stephanie221
      stephanie221 kyle51583

      Posted

      They said it was just a normal lymph node in a normal lymph node spot which just happen to be palpable. One doctor was surprised I even found something so small and the only time they are concerned is when it grow larger (which mine only gets smaller and back to the size it is now). They said a lot of people could probably feel theirs but don't go searching like we do lol

      Also I always felt like if I don't touch my lymph nodes they will go down, but they never do rolleyes

    • stephanie221
      stephanie221 kyle51583

      Posted

      Hi, was just wondering how it went with your physician? And what they said about the node.
  • kyle51583
    kyle51583 stephanie221

    Posted

    Thank you! if you dont mind me asking, how big did it feel?

     

    • stephanie221
      stephanie221 kyle51583

      Posted

      About how big you described yours, the width of my pinky across though my pinky is skinny :p
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