Swollen lymph nodes for almost two years

I've never posted anything hear before but I'm desperate for some advice 

In October 2017 I noticed a lump on the side of my neck with no other symptoms. I had had night sweats on and off for years but never thought anything of it until they started to happen a few times a week. I went to the gp who told me to come back in two weeks if the lump hadn't gone down. This happened for another four months until I finally said that I was either to be referred somewhere for an answer or I was going to make an official complaint.

I had an ENT appointment in September 2018 and by this point I had swollen lymph nodes in my armpit that were unbearably painful. The consultant sent me for an ultrasound biopsy and a CT scan to query lymphoma. The ultrasound didn't show anything so a biopsy wasn't performed and my CT did show enlarged lymph nodes but "not big enough to be worrying" 

I was already really frustrated because I wasn't getting any answers and my health was getting worse and worse. For context I'm at university in Scotland away from home (Ireland), working part time and volunteering so I really didn't need the stress. Not to mention how worried my parents were, and were not a rich family who could afford to fly back and forth all the time.

I had a haematology appointment in December where I was basically told that they didn't know what was wrong with me and they were ready to discharge me. Not only were all my original symptoms getting worse (I now had painful lymph nodes under both arms and in my neck) but I also started to show new symptoms. I had constant kidney infections that couldn't be treated, i was exhausted all the time, my appetite had gone, I was getting headaches everyday and I either had a fever or chills, no in between. I pretty much broke down and demanded to see another consultant which I did in January.

This consultant told me that my scan looked clear and pointed out things they would be looking for. He then booked me an appointment for April which was basically a "wait and see" kind of thing.

Fast forward over two months and my health has gone from bad to worse. On top of everything else, I become breathless quite easily and it feels like there is a lot of pressure on my chest. I know that this could be down to anxiety but I can't help but relate it to everything else. 

Everytime I go to a GP I'm told I'm being overdramatic (I have bipolar disorder which doctors already judge right away). I'm really panicking to the point where I might have to quit my job and uni because my health is so bad and I'm in a constant state of panic.

No one in my family, close and extended, has had cancer so we don't know how to deal with it. I do know that I feel like a complete hypochondriac all the time and I cry pretty much every day over it. Would there be a possible way to seek a second opinion without having to go private which I really couldnt afford? I'm running out of options and if it is cancer I at least want to be given the chance to fight it.

Thank you for reading, any other experiences or advice would be really appreciated so I don't feel so alone in this 

  • Hello, I have stumbled upon this chat whilst googling my systems (I shouldn't do) as it worry's me more!! I have serve health anexity. I have a lymph node above my left collar bone. It has only been there for 9 days I have had my Covid vaccine about 2 weeks ago. I have been to the doctors and they have sent me for bloods and said if they come back clear i will be sent for an ultrasound. I have frantic about it I feel so concerned and worried that it's something wrong. They explained it could be due to my Covid vaccine and to be honest I haven't felt well since my jab. I do not have any typical "sinister" systems such as night sweats etc. I just feel like I've got a cold etc. The node doesn't hurt and feels very movable and firm not hard. I know it's silly to worry when it all adds up in terms of an immune response to the vaccine but it's so hard to not over think. I usually wondered if anyone had similar effects after having the Covid vaccine. This chat brought me a little comfort reading the comments. Thank you 

  • Hello!

    I had my covid vaccine 2 weeks ago (moderna)

    I'm 25 and a week ago noticed swollen nodes in my armpit, at least 2 or 3 near my collarbone and now 1 or 2 in the top of my breast closer to my armpit and chest.

    I did worry at first as I've previously been for an ultrasound for discharge on the same side, no sign of anything suspicious.

    But there have been a few articles about vaccines causing this type of lymph node enlargement, and specifically in relation to breast screening and breast cancer concerns. These are mainly American sites so it's understandable us in the UK are only just experiencing this, especially with the vaccines that have been in use longer over in the States.

    The advice is to delay screenings until 8-10 weeks after your vaccine, and go to the doctors if they haven't gone down in 6 or more weeks, just for a check, as I will do as I'm only 25 and don't have access to screenings yet

    I'm going to likely ring for advice first, either ask my GP or use 111 or similar on a time frame to keep an eye on.

    I do have my 2nd dose in August so it's highly likely this will happen again, so will see what happens! It is causing periods of discomfort but I'm trying to believe it's just my immune system doing its job, and nothing more sinister whilst I wait for the weeks to pass before going for a check. Health anxiety has definitely heightened over the past year, my friend passed away at 25 of covid, so I think now I'm realising I'm not guaranteed old age, and every day is important, but its also important to live and not fear the worst case scenario all the time, but I know its hard with anxiety to do so.

     

    Take care everyone x

  • Hi,

    Having exactly the same symtoms as yourself for the past 7-8 months. I havnt been vacinated yet (some people think and rightfully so that vaccine can cause swelling). Started off as swelling in my Jaw, swollen nodes and eventually tooth pain, ended up going Dentist first thinking it was a dental problem, however i had 3 wisdom teeth out and 3 months later i still had the same swelling in my Jaw.

    Symtoms

    - Swollen Nodes (Left Side Jaw)

    - Swollen Neck (Left Side)

    - Sore Throat (On and Off)

    - Lump in Throat (or the feeling of)

    - Armpit and Groin Pain

    - Shoulder and Neck Tightness

    - Pins & Needles or Tingling Feeling in Face and Neck

    I've since seen my GP and got reffered to ENT Head and Neck Specialist, who didnt seem too concered but im booked in for an Ultrasound. I also had a blood test and my B12 was also below the recommended.

    Im 31 years old, smoked since i was 14 (quit 2 weeks ago) so you can imagine im just thinking cancer.

    Let me know what results you get, your symtoms closly match mine.

    Mark

  • Did this get resolved? Had booster 2 weeks ago and got swollen node above left collarbone, doctors don't seem concerned nor my Mom whose a nurse, lump moves and around size of peanut. Got bloods in two days, I suffer with chronic health anxiety, can't sleep or eat with worry. 

  • Hi GlowJoy,

    thank you for your post, I'm going through some of your symptoms atm - back and forth to the DRs and I'm tired of feeling like I'm a nuisance. My partner has suggested I go private. 
    Did you get any of your questions answered after your results 

    hope your well 

  • Hi so I've been reading a few comments from people and I have a lump under my cheek bone it's been there for a few years, on the first year I think it was I went to the doctor but they couldn't feel anything but it can get bigger and smaller but it's rarely does it and I get an aching feeling but that's rare too. What could it be?

  • Hey! 
     

    I just cam across this post. I have the exactly same symptoms as you - 

    lumps in my neck

    Upper back pain 

    I also had anemia a couple of months ago. 
    I went for a ultrasound and they said that the lumps are just lymph nodes and some are bigger than others, but I don't trust it.

    I was just wondering whether you found out what was wrong with you and the back pain? 
     

    Thanks so much 

  • Hiya,

    I spent ages having blood tests done and saw a blood cancer specialist who said my lumps were Apparently just muscle (I still have them all they are under my armpits and in my neck) so I have just forgotten about it now and tried to not think about it as I worked myself up into a panic. I had a CT scan done and a chest X-ray which came back clear and all my blood tests were fine too although I did have a b12 deficiency. I would try and forget about it and don't worry too much if they have come back clear :) 

  • Hi did you  ever get to bottom of this it's exactly same symptoms as I have had for months

  • Hi,

    Nope, Ive had Ultrasound, CT Scan & MRI. All come back okay, although they didnt scan the full area, its been on going and my symptoms are getting worse. Its been 14 months now without a diagnosis. My doctors are very dismissive and put it down to health anxiety which is complete ***.

    I will continue to update when i receieve news.