Enlarged lymph nodes everywhere
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2 posts since
11 Sep 2019
looking for some advice or guidance on what to do, I’ve been fighting a losing battle with the hospital for 4 years now and seem to be getting nowhere and still have no answers.. so it began 4 years ago when I felt my first lymph node appear in my groin, shortly after one appeared on the other side of my groin, I left it thinking nothing of it until a few months after I felt a lump under my jaw on the left side of my neck, so I went to the docs to check it out he checked my groin, neck and under arms and confirmed there was enlarged lymph nodes under my armpits aswel as groin and neck, I was sent for blood tests, scans to which nothing coming back everything is fine.. so I leave it.. one year later a lump appears on the right side of my neck by this point I’m scratching my head wondering why.. I’m not a sicky person I don’t get ill so infection was out of the question. Again no one is listening I give up again for 6 months until I feel a lump on my collarbone now that is when alarms start to ring and I start to panic.. I refused to leave my doctors until I was sent to a specialist I had a biopsy of the left side neck lymph node (bare in mind they were supposed to do a biopsy on the collarbone lymph node not the neck) anyway that came back reactive lymphadenopathy again was told it’s all good and the only reason why I can feel my lymph nodes is because I am SKINNY and I kid you not I have heard that from 5+ doctors.. the last year my health has gone down hill I struggle to breath.. I have no strength.. I barely eat and when I do it’s tiny amounts due to feeling too full up.. and I am constantly tired.. not to mention my toilet habits are so severe it effects my daily life back and neck pain I cannot sleep at night.. I will mention I am 29 years old.. I feel something is wrong but no one is listening.. I’m not a hypercondriact but my maternal nan has ovarian cancer at 28 and my paternal nan had stomach cancer at 32 just worries me, can anyone tell me if a 1cm left side collarbone lymph node is normal because I everywhere I search about those lymph nodes doesn’t look good.
Many advice experiences greatly appreciated
1 posts since
12 Sep 2019
I’m in the same boat as you lots of reactive nodes. Now guess what has happened a huge lump that is visible has poped up right on top of my collarbone. It’s hard and it won’t move. I was told at the walk-in that it’s inflammation then I was told it’s an infection when I went to A&E. Next step GP and i’m not leaving until I get an urgent referral. You can register with an out of area gp if they take out of area. My gp in 5miles away from me and completely out of my area.
2 posts since
11 Sep 2019
I’m sorry to hear you are in the same boat with the nodes, how long have you felt you lymph nodes for? You will get sent to ENT hopefully in your area they will actually listen to you and give you some answers.. please keep me updated how you get on with your collarbone lymph node and what the docs say, don’t let them palm you off with excuses if you feel something is wrong then don’t give up.. when I was 18 I had a still born son I repeatedly begged them to get him out of me because something was wrong they sent me home told me I’d be fine to only come back 6 hours later to be told he was dead!! So I don’t trust what doctors say I know my own body and a scientific answer is the only real answer you need not from some over worked nhs staff with their stupid opinions
good luck with everything and I hope it is just an infection somewhere in your body
1315 posts since
14 Feb 2011
Hello and thank you for posting a question. I am sorry to learn about your situation. It does sound like things have been a bit of a struggle for you recently.
People do occasionally tell us that they don’t think their symptoms are being investigated thoroughly and they ask us what they can do. But there is not often much that we can say, as you cannot have investigations and tests on the NHS without a referral from your GP. So all that we can really suggest is that people go back to see their GP.
With regards to the size of your lymph nodes it is fair to say that lymph nodes of 1 cm and 1.5 cm in some parts of the body are considered to be a normal size. But when nodes are larger than this it does not necessarily mean that anything serious is wrong. Yes, I would imagine that you are rather fed up with hearing this, but some people can feel their lymph nodes, although most people can’t. So the fact that you can feel your nodes does not automatically mean that you have a health problem.
I cannot know this for sure but I would imagine that the neck node was biopsied because it felt more concerning that the collar bone node. So it is good to know that the result came back as reactive. But I do appreciate that this does not really explain to you why you have the symptoms you have. They must make your life difficult. But as I said previously, you need to see your doctor to get them sorted out. If you feel that you are not getting good care you could ask to speak with the practice manager at your GP surgery.
Although your family medical history suggests differently, it really is uncommon to develop cancer when someone is in their 20s or 30’s. This is supported by statistics. Also the two people with cancer are second degree relatives to you and not related to each other. It would be more concerning if they had been first degree relatives. Obviously you are worried about cancer as you have contacted us. While I cannot diagnose what is wrong, given your age and the fact that you have had the problem for quite a few years on and off, I would not really expect it to be cancer. So it is far more likely that there is another cause. But of course until you know this is bound to be a worry.
I do hope that you are able to get your health concerns sorted. Do get back to us if you have any other questions. If you would like to telephone the number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.
Kind regards,
Jean
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