Lymph nodes everywhere, collarbone included + symptoms?

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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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  • Posted

    Hi Stephanie!

    I would recommend requesting a CT Scan with contrast from your doctor.

    I have been going through some very similar things for the past 8 months; swollen lymph nodes in neck/armpit/groin areas, collarbone pain, rib pain, etc.

    My blood tests also show I am slightly anemic - low iron, but nothing else signifigant.

    I have been to so many doctors appointments, specialists, etc and no one seemed to be concerned. I have had extensive blood testing, X-rays, ultrasounds, etc. I finally was referred to a hematologist who ordered a CT Scan with contrast of my neck, chest, pelvic/abdomen which revealed swollen lymph nodes and I am now scheduled for a biopsy next Tuesday.

    It's frustrating, 8 months of constant fear and agony and I feel like I am just now getting somewhere.

    • Posted

      Thank you for the reply!

      I will be more persistent in my upcoming appointment in a couple days. These symptoms are killing me, my anxiety is driving me crazy.

      I hardly sleep and if I do finally fall asleep I wake up after 3 hours then research on the internet again for hours on end. I'm pretty sure I've been on every lymphoma thread/page twice.

      Right now my bones feel so uncomfortable, lying on my side it feel like my rib/back bones are going to snap (like I'm lying on something and it's pushing my bones but nothing's there).

      I did get the ultrasound results back and it said "small nodes are present within each supraclavicular measuring between 4 and 6mm transverse diameter. These are grossly of normal morphology with prominent hypoechoic margin and small fatty hila without significant hyperaemia. These may represent reactive lymph nodes".

      I was shocked cause they feel so much bigger ! Like at least 1cm.

      I've been even more scared as I just found out a girl I went to school with has just been diagnosed with Hodgkin's lymphoma and she said she had no symptoms only lumps on her collarbone rolleyes then a ct scan revealed swollen nodes in her chest/lung area.

      Please keep me updated with your situation, its comforting to know I'm not alone here.

    • Posted

      Wow! You sound like you are in the exact same boat as me!

      Just last night I woke up only after being asleep for a few hours and spent the next two hours reading everything I shouldn't be! It's horrible. My anxiety is insane lately.

      My ultrasound did not reveal any enlarged lymph nodes, but two months later my CT scan showed "small axillary lymph nodes bilaterally, left measures 7x15 mm and 10x10 mm on the right, along with other smaller bilateral axillary lymph nodes"

      It also revealed one enlarged lymph node in my neck which I believe my doctor said was 1.7cm - but he felt it was not of concern, but sent me to an ENT to discuss doing a biopsy which is what I'm scheduled for next week.

      I totally understand the bone pain you are feeling! When this first started several months ago, my hips hurt all the time, now most of my pain is on my shoulder/collarbone area.

      And I also completely understand your fear of hearing of people being diagnosed; I've had two different stories of people my age being diagnosed with lymphoma recently and it scares me to death.

      It's just so strange, I never get sick, and then since February of this year, I've probably been to at least 15 doctor/specialist appointments - it has been awful. I would never wish this on anyone, but it is nice to hear that others are going through the same thing I am.

  • Posted

    Im in the same boat. About 6 months ago i felt a small lump behind my ear, i waited about a month or 2 thinking nothing if it cause it was small but then i started googling (bad idea) and got extremely concerned, being ab anxious persob doesnt help either! Ive been to the doctor countless times many cbc done nothing abnormal, ultrasound done confirmung it was a lymph node about 1.5 cm if i remember the correctly. One doctor gave me antibiotics didnt do nother about 2 weeks later went to see an ENT he said i had a very mild sinur infection and gave me another round of antibiotics, went back for a follow up with the ENT he said he didnt feel anything abnormal of the lymphnode and sinus infection was gone but i had a lot of drainage. Ive had no other symptoms im q worry wort so went back to the doctor and was refered to a hematologist whi felt other lymph nodes slightly enlarged in my neck and who ordered my ENt doctor to do a biopsy but my ENT doctor thought was unnecessary so he did a CT scan with contrast just this morning, i still called my hematologist back and demanded i get a biopsy regardless. I feel like ive been wasting time and need to figure out what is going on. Ive been anxious and scared for too long. Although i went out of town this past weekend for about 5 days and i swear the whole time i was there i could barely feel the lymph node. No more than 2 hours away from home i could start feeling it like it just decided to blow up. Idk what is going on just trying to remain as calm as possible. If you feel something isnt right be persistant, doesnt matter the outcome if will give you peace of mind

    • Posted

      Hi Rochelle!

      I also have recently noticed a small lymph node behind my right ear! It is painless, rubbery, but not movable. Sometimes it's harder to feel than other times.

      In April it swelled up to about the size of a pea, and went back down about two weeks later, but I can still feel it, directly behind my ear. It's strange, but I'm going to bring it tony ENTs attention because I've had so many weird symptoms for months on end now.

      I hope your CT Scan yields positive results for you. The worst part is constantly waiting!

    • Posted

      Nobe else could feel the lump other than me it was tiny, vut to me it grew in size vut idk if that just in my head cause ct svan came back this time said it was only 0.4cm when the ultrasound a few months ago said 1.5cm, mune also feels hard at times and then soft and slightly moveable. What kind of symptoms have you been having?

      U actually just recieved my ct result online in suprised they came up that fast

      Results:

      Base of the brain, nasopharynx, and oropharynx are unremarkable. There

      is a 0.4 cm nodule at the site of clinical concern adjacent to the

      right ear and right parotid gland. A couple additional small nodular

      foci are seen in both parotid glands likely representing lymph nodes.

      Submandibular glands are symmetric. Airway is patent. No necrotic

      adenopathy is appreciated. The visualized upper lungs demonstrate no

      consolidative process.

      Im not too sure what this all means but it sounds good? I just have to wait and see what the doctors say and what to do next.

  • Posted

    I am in a very similar boat as well for the pat ~8 months. Multiple swollen lymph nodes in neck/shoulder area, serious sinus issues, pain in chest/bones.. Blood tests normal aside from slightly lower WBC (hematologist wasn't concerned), ultrasound and ct scan confirmed swollen lymph nodes but again dr wasn't concerned. I went to an ENT who noticed the right side of my throat, which has large lumps that I did not notice before but were possibly always there, was more swollen than my left so he did a biopsy which showed "reactive tissue." Not sure what it's reacting too and the ENT couldn't tell me either. Now it's been a few months since seeing a dr and I've tried to just forget about everything, which is hard when I'm still having chest and bone pains, sinus issues, and my nodes are still swollen. I had an acquaintance who works in holistic medicine recently suggest getting tested for Lyme disease but haven't done this yet. Please send updates if you have any!!

    • Posted

      Hi,

      I also have sinus issues but it's very strange, I get a sharp shooting pain in my nostril that lasts 5-10 seconds and is usually triggered by cold and a feeling to sneeze.

      I do know I have an osteoma (benign bone growth) in my nostril which was found from a brain ct rolleyes (usually anxiety mind of mine thinks it might be more than a 'benign growth'wink

      The bone pains are so annoying, it's even worse when I'm very anxious and scared from imagining getting diagnosed with cancer, or reading stories online where their symptoms were like mine and they were diagnosed with cancer sad

      I'm curious if your ultrasound report told you that you have lymphadenopathy ?

      Because mine says "No gross pathological lymphadenopathy is seen" yet I can feel big lumps all over my jaw area, I can feel the chain of lymph nodes actually going to to my collarbone, so it's hard for me to fathom that statement.

    • Posted

      I don't have my ultrasound report, but when my doctor called with the results, she said it read "no enlarged lymph nodes were noted" if I remember correctly.

      But, all of my paperwork for my specialists appointments, doctors appointments, scans, etc have all read reason for visit/referral: "Lymphadenopathy"

      I had a horrible sinus infection, and almost constant sinus pain/pressure the past few months, but my doctor said that typically lymph nodes will not swell due to a sinus infection which I thought was really strange.

      At some points I have almost felt like my lymph node could be swelling due to an allergic reaction to something I've eaten as my throat would get super itchy, and sometimes they would swell up almost immediately after I would eat.. But then, the next time I would eat the same thing, I'd be fine.

      I've also wondered if it could possibly be hormonal?! I've noticed a lot of girls in their 20's (I'm 27) with the same exact issues.

      Of course this week I've become incredibly worried after finding a hard/slightly rubbery lymph node behind my right ear all after reading a lady's blog about her diagnosis with lymphoma. I know a lot of things I read are not factual or people being overly paranoid about nothing, but she was a pathologist in the medical field I do believe, and her description of her lymph nodes described the one I recently felt perfectly.. So of course, my anxiety is insane again.

      Has anyone read about the symptoms being stress induced? I've read a few places about lymph nodes becoming swollen due to stress, but two doctors have told me that's not possible.

    • Posted

      Mine came back saying lymphadenopathy with benign findings. I think the "diagnosis" of lymphadenopathy depends on the size of the nodes, although I could be wrong. The two that they took pictures of on my neck measured .7x.3x.7 cm and .9x.3x.6 cm. It is frustrating however not knowing what is calling the swollen nodes and other symptoms. You can always tell when something is not right with your body and it can be very stressful until you know the answer!

    • Posted

      Mine came back saying lymphadenopathy with benign findings. I think the "diagnosis" of lymphadenopathy depends on the size of the nodes, although I could be wrong. The two that they took pictures of on my neck measured .7x.3x.7 cm and .9x.3x.6 cm. It is frustrating however not knowing what is calling the swollen nodes and other symptoms. You can always tell when something is not right with your body and it can be very stressful until you know the answer!

    • Posted

      I just came back from a doctor (different doctor) she was surprised my last doctor didn't do a fine needle aspiration on the node during the ultrasound.

      She said perisistant nodes showed be evaluated, especially collarbone area.

      So now I'm scheduled for a FNA to see what's going on with the cells in that collarbone lymph node, apparently it's 4-6mm on ultrasound but I swear it feels at least 1cm rolleyes I'm scared out of my mind for what the results are, I'm scared to just book the FNA.

    • Posted

      This is what I'm having done this upcoming week. I'm not nervous about the procedure, but I'm a nervous wreck over the possible results.

      Mine is supposed to be on one of the lymph nodes in my neck. But, unfortunately my doctor did tell me that FNA only has an 85% accuracy rate and the only way to get a positive answer is the full biopsy of he lymph node.

    • Posted

      I know its scary i havent even gotten a biopsy scheduled yet and im terrified but its better to know. Hoping and praying for you that its just nothing.

      How long have you had the swollen lymph nodes?

    • Posted

      Yeah, Hopefully I'll get some relief from the results. If you want a biopsy you should push for it, this constant worrying for me has gotten out of hand sad

      I've had the nodes since September last year (is when I noticed them) they have not changed it size at all. And my other doctor doesn't seem worried about my supraclavicular (and one infraclavicle) lymph nodes EVEN though everywhere online suggests 90% of these nodes enlarging is due to malignancy rolleyes

    • Posted

      Yeah, Hopefully I'll get some relief from the results. If you want a biopsy you should push for it, this constant worrying for me has gotten out of hand sad

      I've had the nodes since September last year (is when I noticed them) they have not changed it size at all. And my other doctor doesn't seem worried about my supraclavicular (and one infraclavicle) lymph nodes EVEN though everywhere online suggests 90% of these nodes enlarging is due to malignancy rolleyes

    • Posted

      Have you had any other symptoms?

      I am pushing for the biopsy, i swear i feel like ive been calling the doctor constantly but im determined to get answers. I recently went to the hematologist and he sent me to my ENT to get a biopsy but the ent didnt think it was nessessary because when he felt it, it was smaller than a pea (his words) to me it feels a lot bigger, but he ordered a ct scan and it measured at 4mm, im still waiting for the hematologist to review the results and tell me what to do and schedule a biopsy but im not a patient person i cant handle this waiting, ive had no other symptons but my anxiety gets the best of me and have a 11 month old son i cant let it take control of me but its so hard some days. Have you gotten a ct scan also?

    • Posted

      I had my Fine Needle Aspiration today.. Now the waiting begins! I won't have my results until next Tuesday. 😕

      My ENT said again today he thinks it's nothing, and I pray he's right, but I just wish I knew why I feel so bad all the time now. I have not noticed any swollen lymph nodes in my collarbone area and my CT scan did not reveal anything, but I have crazy bone pain in my collarbone into my shoulder and neck .. Does anyone else have this pain? It's so annoying.

      The FNA is the weirdest procedure! My doctors used seven different needles to take samples of the largest lymph node in my neck. Definitely a slightly uncomfortable procedure, but hoping for negative results for anything bad.

    • Posted

      I go for a follow up to get my ct scan results on Friday, I wish he would just tell me over the phone! Anxiety is killing me. I think im still gonna ask fot a biopsy too. But I hope all turns out well for you! And your result are all clear! Keep us updated
    • Posted

      Well I've had the worst week of my life sad

      this week I had an ultrasound of my neck for lymph nodes and also my breasts because I also said I thought I felt a lump but idk what's normal there.

      So now more things to worry about is they found a 9mm solid lump on my right breast (the same side where my infraclavicle lymph node is) and these nodes usually indicate breast cancer.

      I've been so upset my body is numb, I can't believe this is happening to me, I'm only like 20 years old with no immediate cancer in my family.

      Had a core biopsy of that lump and found out the results tomorrow.

      I wish you good luck with your results.

    • Posted

      Stephanie,

      I am so very sorry to hear this. In hopes of easing your mind, on my journey over the past several months, I also was told I had three masses in my left breast and spent Easter weekend on the verge of a mental breakdown before I could get a mammogram/ultrasound the following week.

      My results yielded that I had fibrocystic breasts - which my mom also had in her 20s. I was worried sick over breast cancer for several days, but it ended up being hormonal and nothing more than fibrocystic tissue.

      I have said a prayer for you, and I will keep you in my thoughts and prayers tomorrow as you receive your results. Please feel free to email if you just need/want to talk.

    • Posted

      Im so sorry your going through this Stephanie, I can even imagine what your feeling at this time, im sure your scared but just think positive! Like heather has said my mom also had fibro cystic breast, its very common. And with no family history im sure you will be fine. You are in my thoughts and prayers tonight and in the morning! I wish you all the best, God is with you! If you need someone to talk to I'm here. Keep us updated. GOOD LUCK?

    • Posted

      Just got a call from the breast specialist clinic with the results.

      BENIGN !! :D just a fibroadenoma !! I'm so happy! All this time I've been worrying like a mad woman, I've been googling at least 8 hours a day (not even exaggerating!)

      I can finally have more than 3 hours sleep tonight!

      Thank you guys so much for your prayers, wish you the best with your results, the waiting is awful, I was actually prescribed anti-depressants. hope everything turns out great on your end! X

    • Posted

      Im so happy for you! And that you for the good wishes! I hope you get the rest you need and stay away from google!!
    • Posted

      So just a little update on my results. The ENT doctor said there was a small lesion on or near the salivary gland, this is the lump I have been feeling and what is thought to be a lymph node he said he isn't too concerned with it but he wants to remove it to see what it is. This is schedules 2 weeks from now.....more waiting 😣 I called him back after leaving the office cause I am super concerned and kinda freaking out and he said it's about the size of a small pea. He didn't mention anything else abnormal found and said he thinks it may just be benign but we won't know for sure of course until after the biopsy. I am still scared tho. That 'what if' thinking won't leave me alone. Anyone ever hear of anything similar to this?

      Any updates on your biopsies?

    • Posted

      My nurse called me yesterday and said they did not find any cancer cells in the results from my fine needle aspiration! Huge sigh of relief.

      I still have to meet with my doctor on Tuesday to go over all the details of my results, but for now, I can breathe a little easier knowing cancer was not found.

      But of course, I still have a million questions of why I feel so strange and my bones literally hurt all the time. I'm most worried about my collarbone now. Nothing was remarked on my CT scan about my collarbones, but they have been hurting so much lately which is freaking me out. So hopefully my ENT can shed some light onto this at my next appointment.

      Saying an extra prayer for you, Rochelle! Are they doing a full biopsy of the lesion or a fine needle aspiration?

    • Posted

      Im so happy for you and hope your mind can rest at ease.

      It is a full biopsy, the lesion or lump, was 4mm he said small so he's taking it all out i believe.

      Thank you prayers are greatly appreciated

    • Posted

      Hey guys just a little update. I went for results and said I have a small lesion on my parotid gland. So now I'm scheduled to have it removed on the 15th ughhh I hate the wait. Wish me luck and keep me in your prayers please im freaking out and anxiety is off the charts but im trying my best to keep it together. Hope all is well with all of you!

      Has anyone heard of lesions on the parotid gland?

    • Posted

      Most salivary gland tumors are benign and occur in the parotid glands. A painless salivary mass is the most common sign and is evaluated by fine-needle aspiration biopsy. Imaging with CT and MRI can be helpful. For malignant tumors, treatment is with excision and radiation. This is what I found from my research. Hope this helps!
    • Posted

      Thank Alana! I've been trying to stay away from google..don't wanna freak myself out even more.

      I had a ct scan and thats how he seen it, he doesn't wanna do a FNA just wants to go in and take it all out. I'm hoping for the best!a

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