Lymph node worries

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3 years ago I was referred via the 2ww pathway for an inflamed hard 1-2cm lymph node above my left collar bone. I had no other symptoms, I was examined- no scan no biopsy and they said most likely a reactive node.

now a couple of months ago I discovered another one in my throat area. I waited a couple of weeks to see if it went down and it didn’t so booked an appointment with gp. I discussed it all with her and asked to be tested for Lyme disease as I was bitten by a tick. 

my bloods have all been fine, lyme test was negative but I completed a 3 week course of antibiotics for it anyway. My gp said I didn’t meet the criteria to be referred but as I have private insurance I asked to be referred privately. Since I have not been able to get hold of a single medical secretary in my area to get an appointment. GP said I’m too well to have anything more sinister going on. 

I am normally a really active person - I go to the gym weight lifting 3-4 times per week and suddenly just couldn’t bring myself to go any more. I thought I was suffering from a depressive episode but now looking back I think I have really bad fatigue and no energy. I also feel a bit short of breath and if I force myself to go workout I feel like I run out of steam and can’t continue. 

I also for the last couple of months was having a weird sensation in my face but didn’t think much of it. It has progressively been getting stronger - now feeling tingly and sometimes a sharper sensation. I was wondering if I had a lymph node pressing on my facial nerve but not sure if it is anatomically possible? I was having a good feel yesterday and I can feel a hard raised occipital node as well. One of my groin lymph nodes is larger than the other side I have noticed too. I have multiple other smaller palpable hard lymph nodes in my neck and one under my chin.  

The longer im going on without being able to be looked and and put my mind at ease the more anxious I am getting about it .

  • Hi and welcome from me.  It is difficult to say what is going on - and nobody on here would offer a diagnosis as that is for the professionals to do.  Most of us present differently with cancer.  Mine was a lymph node that did not go down.  Others may be ulcers that do not heal.  Thus, it is difficult to offer advice as to what may be happening. I am not sure "being well" has much to do with a cancer hitting you in the early stages.  I certainly did not, and have never actually, felt unwell from the cancer.  The treatment is a different story.

    Your GP should know best and there will be protocols they should be following.  Clearly you need reassurance and clarity one way or the other.  I would follow up on the private option whilst trying to get your GP to refer you to ENT.  I believe they are supposed to err on the cautious side with H&N cancers rather than assume all is OK.  Maybe go back to them and gently push for a referral??

    Whatever you do try not to overthink your symptoms.  It is easy to look at Google and be found pregnant if you are male!  A bit facetious, but the message is that you can make your symptoms fit a disease...

    Good luck.  

    Peter
    See my profile for more details of my convoluted journey
  • Hi Peter thank you for taking the time to respond. 

    how are you doing now? How big was your lymph node? 

    I’m trying to stay off dr Google as tempting as it is to look for answers!

    yes that’s a good idea ent was going to be my next line of attack. I actually work in dentistry so I’m going to ask a colleague to refer me. Hopefully I can be seen soon. 

    its difficult to know what symptoms are real or you’re “giving” yourself but my lymph nodes are definitely a real thing. 

    All the best Blush

  • Hi. My cancer presented in a lymph node in my collar bone. I wasn’t unwell in fact apart from Larry the lymph node I had no other issues. I was fitter than I had ever been. . Oral cancers are very rare over 99% of urgent referrals are not cancer. Keep off DR google. Ask your dentist for a referral or keep pushing ent. We can’t diagnose on here. Swollen nodes are often as your were reactive lymph nodes in other words your lymph nodes are doing what they are designed for. You don’t say how old you  are but oral cancers rarely happen to younger people. Try ti stay calm. 
    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • I don't remember the size.  On my discharge summary it is reported as "large".  I do know it was actually quite a bit bigger than the u/s indicated.  I could be wrong but 1.5x1.5x3cm rings a bell.

    Peter
    See my profile for more details of my convoluted journey
  • The longer im going on without being able to be looked and and put my mind at ease the more anxious I am getting about it .

    As you have insurance I wound visit a private GP and get a referral for a fine needle aspiration biopsy at least. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • I'm absoloutly shocked at the lack of support from your GP. I would go back and demand a referral, we are far too polite in these circumstances. 

    If you can't get a GP appointmenthen either ring 111 for advice or go to your local walk in centre. Both of these will be able to either advise or refer you to an appropriate clinician.

    Good luck and let us know how it goes.