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Lymph nodes

fleur123
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Evening everyone :)

Did you know that you have lymph nodes on the back of your head? They're called the occipital nodes. 

I had no idea that was a thing until mine suddenly popped up like a balloon! I work in healthcare, so one of the doctors felt around when I mentioned that my head felt like someone was yanking my hair really tightly, and said that she felt a firm, very hard 2-3cm bump on the back of my head. 

My first instinct was that I had banged myself sometime that week, as I'm incredibly clumsy and have a tendency to forget that sort of thing. However, the lump has remained for a good 2-3 months now, and alongside it, the one just behind my ear has started to grow too. The ear one is just a bit bigger than the size of a kidney bean, and is also hard and unmoving. They're both starting to cause me pain as they grow larger, I think because the skin is pulling?

I've had all the usual bloods done, except my red blood cells showing microcytosis. My EBV/Mono screening came back negative as well so I can rule that out.

I was referred to Haematology in December last year for suspected lymphoma, as I had a large swelling on my neck amongst the usual other B symptoms. CT and Ultrasound scans both showed that it was just a likely reactive node that's common for my age (I'm 20 - 21 next week!).

The doctor then found a lump in the space between my armpit and breast, and referred me to the breast clinic for assessment with them. I had yet another ultrasound which came back clear, however they marked the wrong area on my skin so I'm slightly doubtful! 

My follow-up appointment with Haematology is next Wednesday, where they'll likely discharge me due to my previous results. I'm just wondering what the best way to discuss these new nodes without seeming pushy? One of the doctors I work with thought I should've been re-referred by my GP as it's a new site, whilst another thinks that I can just mention it next week. 

Has anyone had a situation like this before, or even had their occipital node raised/biopsied? I'm curious to know as I've never heard of it before!

Sorry for the ramble, I needed to get it all off my chest! Thank you all xx

  • Offline

    Hi Fleur123,

    A very warm welcome to our forum.

    First of all, I must confess that I am not a doctor and that these are just some of my personal thoughts. Sometimes we have to be our own advocates, when it comes to these types of investigations, as you are far too young to have any mistakes made.

    The lymphatic system is complementary to the circulatory system and tends to run throughout the body in a similar way. It is fortunate that you work in health care and were able to get the advice of a doctor, as soon as you mentioned your symptoms. It is reassuring that, despite the tests that you've had, nothing abnormal has been detected. It is good to hear that your follow up appointment with Haematology is due next Wednesday.

    Swollen lymph nodes in this area can be the result of a mild infection or inflammation, These usually settle down after a while. If yours haven't settled down yet, I can understand why you're not adequately reassured, despite your test results. The only way that your consultant will  be aware that you are still having these symptoms is to tell her/him. You might find it helpful to write down any questions, new symptoms, or doubts that you have, prior to Wednesday. Take this to your consultation and mention as much as you feel might be relevant. You are certainly not being over pushy. Your consultant cannot second guess how you feel, unless you give them an accurate account of all that has happened since you last saw them. Has anyone suggested carrying out an MRI? This might be your next move.

    I sincerely hope that the result stays the same and that these are all reactive nodes. For your own peace of mind, you need to make absolutely sure that everything has been fully investigated before you are discharged.

    Please keep in touch and let us know how you fare on Wednesday. We are always here for you.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine,

    Thank you so much for your lovely reply!

    I'm also under Neurology for a different reason, and they've requested a full spinal and brain MRI within the next couple of months! However, I will definitely mention this to my Haematology doctor to see if he wants me to have one sooner.

    Thankfully, up until recently, I haven't actually had any noticeable signs of any kind of infection, though I know our bodies work in weird and wonderful ways and it may have actually been reacting to something without me knowing!

    The worst part of all of this is definitely the pain, and maybe also the night sweats! It's a very embarrassing symptom to have whenever I have people over, and always gives me the worst chills whenever I get drenched enough to wake up. 

    My GP actually did an advice and guidance to Haematology back in June because of said night sweats, but they never replied!

    Anyways, I'll be sure to post an update on Wednesday after I've seen the doctor. Thank you again for such a kind, reassuring message xx

  • Offline in reply to fleur123

    Hi Fleur,

    I am glad to hear that you are already waiting for a spinal and brain MRI, albeit for a different reason. This is the gold-standard test for your symptoms. I hope that Haematology can help you move forward on Wednesday and I shall be thinking of you then.

    Kind regards,

    Jolamine xx

  • Offline in reply to Jolamine

    Hi Jolamine! 

    Thank you again for all of your support :) I'm just replying to give you a little update as you asked!

    I saw the haematology consultant today and went over my lumps and symptoms. He found one on my neck that I hadn't realised was there, and was probably larger than all of the other combined! Because of this and the fact that I have a recurring infections, he's understandably quite concerned. 

    I have to have a CT Neck with Contrast, and if one pings up on that then I have to have it biopsied. He's also took some bloods and one of them is for 'flow cytometry' to check for markers I think. I live in a very small county, so it's had to be sent to a hospital far away!

    Hes also ordered a colonoscopy as I had a very positive FIT test, and ultrasound of my pelvic area. I'm going to be very busy for the next few weeks!

    Thank you again xx 

  • Offline in reply to fleur123

    Hi Fleur,

    Thank you for your update. I am glad to hear that you weren't discharged as you feared. It sounds as if your haematologist was pretty thorough and I'm glad to hear that you are being referred for a CT scan and a colonoscopy. Here's hoping that the swollen lymph node in your neck is just another reactive node, but that they can find some answers for your symptoms. 

    Have you been told how long you are likely to wait for these tests? I hope that you get them soon.

    Please keep in touch and let us know how you get on with these tests. Remember, we are always here for you.

    Kind regards,

    Jolamine xx

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