Lymph Nodes + Illness - Any advice greatly appreciated

Sorry in advance for the long post. I am very grateful that I can reach out to you on this forum. 

About six months ago, my dad was diagnosed with Stage IV NH Lymphoma for the second time. A few months later, I felt compelled to check myself and felt a lymph node next to my ear. I went to see an ENT who was dismissive but after some pushing CT scanned and biopsied it (~1cm) - benign. After the procedure, he almost laughed me out the room telling me I was worrying over nothing - quite upsetting. In the month since, I have felt extremely ill - constant right side earache, lost 10lbs or so, unable to eat, persistent cough, swollen throat, shortness of breath, left side abdominal pain. GP gave me a chest x-ray (normal) and tried antibiotics/steroids/inhalers (none helped, virus tests all negative). I then felt swellings all over my neck, saw another ENT who said I had shotty lymph nodes, nothing to worry about usually but ordered an ultrasound. A few days ago, I suddenly felt a few small movable lumps above my right collarbone. Like an idiot, I googled this and read some research papers saying that this area is almost always abnormal (metastatic or lymphoma). Needless to say I haven’t been able to eat or sleep at all worrying until yesterday when I had the ultrasound. Nurse told me thin people commonly feel nodes in collarbone area?

ENT called me to tell me all normal (all neck nodes less than 7mm, he doesn’t worry until 1.5cm) including lump above collarbone. Said I could ask for a biopsy on a collarbone lump if I really wanted, but doesn’t recommend as they are small/procedure has risks and is 100% sure it’d be benign. How can he be so sure with just ultrasound when everything I’ve read suggests any nodes there, let alone multiple, is worrisome? He didn’t offer any resolution to why I’m otherwise still ill, and my GP is also stumped. Does this resonate with anyone? I am not really sure what to do at this point - should I push for biopsy anyway? Go and see another doctor? Or just wait for a few months, hope the pains disappear and do a follow-up. I am Male and early thirties.

Thanks in advance for any replies.

Parents
  • Hey!!!

    I am so sorry to hear about your dads diagnosis and I completely get why this would make you check yourself, be worried and feel upset with how your doctor treated you. 

    i can resonate !! Although I have sore throat swollen throat and ear pain with it all! No infection tho x 
     

    im 24 and since December have had several palpable lymph nodes in my neck, armpits and collarbone (left side though)! I had loads of bloods done, ultrasound on neck and armpit who said long lymph node on armpit and she would biopsy if she was worried which she isn't although I wish I had asked her to just do it! And my neck are all apparently normal including collarbone. It's right under my skin it's tiny 3.5 mm but it's just under the skin moves around loads and aches. As does my whole neck to be honest with you! The ones in my neck feel like big glands either side then small nodes around mainly left side (1cm and under) none of them have gone, my throat feels swollen and sore and I have unusual things on my tonsil (had two swabs clear) so I consulted my dentist as I too was told it's because I'm skinny.. I guess skinny on one side of my body only lol !!! My dentist refered me to maxiofacial and they have ordered me an mri and reflux medication to try in mean time which I'm waiting for. I have seen lymph nodes below 1cm are normal but I'm not skinny I'm 10stone size 10-12 I'm normal lol but it's like you say the collarbone that's making me nervous and that so many are palpable in different locations! 
     

    keep pushing for answers, hopefully we will get them x

  • Hi,

    I appreciate this is a super old post now, but I'm experiencing a lot of the same and was wondering if it ever settled down for you or if you're living your best lumpy life?

    I've had swollen armpit nodes for months (ultrasound in august told normal), now palpable in neck, collarbone and behind ears. 
     

    Can't kick the feeling something is amiss. ENT on Sunday  

  • Hey!!

     

    sorry to hear you've ended up on my post! 
    unfortunately  (but I guess fortunately in the grand scheme of things?) I'm still living my best lumpy life but most all on one side. However, I met someone else through this chat who I've met with in person who is also living her best bumpy life and so of course I can't say for everyone but could truly be normal. 
     

    I hope ENT can give you more answers, I found my collarbone node in feb 2020, jaw dec 2019 none have grown but I can feel them and my armpits but I've had 2 scans on each and apparently all ok, however they ache sometimes and I do feel something is amiss also. 
     

    I hope you get some answers,

     

    Becky :) 

Reply
  • Hey!!

     

    sorry to hear you've ended up on my post! 
    unfortunately  (but I guess fortunately in the grand scheme of things?) I'm still living my best lumpy life but most all on one side. However, I met someone else through this chat who I've met with in person who is also living her best bumpy life and so of course I can't say for everyone but could truly be normal. 
     

    I hope ENT can give you more answers, I found my collarbone node in feb 2020, jaw dec 2019 none have grown but I can feel them and my armpits but I've had 2 scans on each and apparently all ok, however they ache sometimes and I do feel something is amiss also. 
     

    I hope you get some answers,

     

    Becky :) 

Children
  • Hey Becky,

    Thank you so much for taking the time to respond, it's reassuring there's other lumpy people out there but I really do hope we all wake up one day and they miraculously disappear for all our peace of mind. 
     

    You have helped put my mind at ease after a day of panic with my ENT tomorrow. I'm the worst for googling, but I always want to check before I head to the Drs that I'm not wasting their time. Something I definitely regret for all this!! I sometimes wonder if this is just how I have always been but only noticed over the last 6 months. 
     

    My rational head says google really only shows the worst case scenario, but there is always that element of worry we all relate to. 
     

    Thank you so much again.