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enlarged lymph nodes - worried!

16 Mar 2018 13:39

Hi all! Sorry if this is slightly long to read.

I'm 21, and female. In november, I noticed one of my lymph nodes in my neck was enlarged, without any other signs of illness. Shortly after my groin swelled up, and then I noticed another in my neck was enlarged too. The groin 'swelling' seemed to go down, I occasionally worried about the ones in my neck, but didn't do anything about it. Since november, I have been getting increasingly tired, however this comes and goes. Some days I am fine, other days I am exhausted, and it is completely unrelated to how much sleep i've got! One in particular on my neck seemed to be growing larger, and I then noticed I could actually still feel the one in my groin. I've also seemed to have slightly tender side of my breast, on one particular side, which comes and goes too. I don't know if this is related.

I finally went to my GP on monday, and she examined me and found some more  - another in my neck, one above my collar bone, and another in the other side of my groin. So in total I have 6, that I know of. I'm also convinced another one has swelled up in my armpit since I saw her, but I don't know if this is stress related? The day it felt swollen, the side of my breast on that side was also tender to touch (the opposite to where it has previously been sore). I've also seemed to have developed a 'tight chest' feeling and a chesty cough when I breathe in deeply since seeing her, after she pressed down on my stomach and told me to inhale/exhale, but then again, maybe its always been there/ is stress related? I'm just noticing it now?
I had a chest x-ray this morning, have a CT scan on my neck in just under 2 weeks, and blood tests in about 3 weeks. I feel a bit confused to be honest, I know they're testing 'to rule out' cancer, but what does this actually mean? a specific type of cancer? any cancer? I don't really understand the stages of diagnosis, and how likely really is this to be cancer? I don't think I've had any significant weight loss, and I definitely have not had night sweats to the point I've drenched the sheets, i've woken up hotter than usual some nights but that could be a whole range of things.

 I know lymphoma can cause enlarged lymph nodes - does anyone know if 6 palpable nodes is a bad sign? The one in my neck that I had originally noticed seems to feel quite hard and doesn't move, but my GP did say the ones in my groin area are movable and so that is more 'promising'. I'm trying to stay positive but the worry is really eating away at me, at a time where i'm trying to write my university dissertation too!

Any kind of insight/opinion would be really helpful/appreciated, its driving me crazy!

 

EDIT: I also had glandular fever 2 years ago, so we know it isn't this. 

 

enlarged lymph nodes - worried!

17 Mar 2018 11:41 in response to SunshineEm

Hi SunshineEm. Welcome to the forum.

I'm not a doctor and to the best of my knowledge no one else is here. 

Doctors have a massive tool box of tests backed up by years of training. The trouble is that there are few tests that can definitively say you've got such and such a disease. But rather the tests say that some level of a particular protein or hormone is higher or lower than normal, or there's a mass in this point in the body, or this nervous reaction isn't what we'd expect from a normal person. Indeed, any of these tests can return negative or normal results. Individually, one test result usually tells the doctor nothing; it's only when results from multiple tests are combined together that the doctor can hazard a diagnosis. 

So when faced with a patient whose diagnosis isn't obvious, the doctor reaches into the toolbag, and pulls out a whole set of tests. Which particular tests are dictated by guidelines and the doctor's own experience of which tests to run with the patient in front of her. And so you suddenly find yourself having multiple blood tests, and maybe imaging such as ultrasound, MRI or CT. Or maybe you're thrust on a scary two week urgent pathway.  

Now, often the first thought in your head is OMG, the doctor thinks I've got cancer! I'm going to be dead in a year's time!! If you then look up the tests on Google and find that they're used in cancer diagnostics then your anxiety level really ramps up a notch or two. That's only human, but the reality is that the doctor is simply running a series of obvious tests (obvious, if you're a doctor) and when the results come in, maybe there'll be enough information to figure what's wrong with you. Until then, you have an undiagnosed disease.

All the tests you've had so far seem reasonable for a patient presenting with your symptoms, but no one will know what it is until the results are in, but overwhelmingly the odds are that your body is fighting some infection. 

Please keep us updated with your results. Good luck. 

enlarged lymph nodes - worried!

17 Mar 2018 21:03 in response to telemando

Thank you for your reply, I really appreciate it.

Its funny because what you said about googling the tests and seeing they're used in cancer diagnostics and then anxiety ramping up... its exactly what i've been doing this week (haha). Not to mention googling my supravicular lymph node being enlarged and seeing a multitude of studies suggesting it "always" suggests malignancy - its silly really why we do this to ourselves! Only our doctors can find out, not google.

I will keep you updated. Thank you.

enlarged lymph nodes - worried!

17 Mar 2018 21:36 in response to SunshineEm

I've done it myself, and ended up frightening myself silly. 

I suggest you put Google back in its box for now. We're always here if you want (or need) to talk again. 

enlarged lymph nodes - worried!

23 Mar 2018 12:56 in response to SunshineEm
So I've just had my chest x -ray results, and they were clear! Obviously feeling extremely relieved and so so glad, although the worry hasn't completely left me. Does a clear chest x-ray rule out lymphoma or other cancers? or does it just mean I don't have it in this area? I know obviously its a good sign I don't have a mass or anything along those lines in my chest! My CT scan is on my neck, as my largest node is there and is the one shes most concerned about, and that is on Wednesday so now its just a matter of waiting again.

enlarged lymph nodes - worried!

2 Apr 2018 19:00 in response to SunshineEm

Sorry I don't have any answers for you but I am going through the same thing.

I only have one hard swollen node above my collar bone that I have found anyway. I have been for an ultrasound and ct scan so hopefuly will get some kind of results tomorrow. 

I have also Googled and found nothing good so expecting the worst.

Hope you get some good news. 

All this worrying is awful 

enlarged lymph nodes - worried!

5 Apr 2018 15:37 in response to Summer88
The worry is the worst part - I just want to know! Did you get your results back? I was told a 2 week wait for my ct results... and only had my bloods taken yesterday so I wont have any further answers now until next week. I hope your results were normal and you can finally stop worrying and relax!

enlarged lymph nodes - worried!

23 Aug 2018 12:28 in response to SunshineEm

Hi SunshineEm, 

i am going through a similar thing! I’m 20 and soon to be going into my final year of uni so I deffo don’t need this stress!! I have had a swollen, painless lymph node under my neck for 3 weeks now, without any illness. Yesterday the lower part of my neck near my collar bone is feeling swollen and fat, and hurts a bit. I’m still waiting for an appointment with the ENT. 

Did you ever find out what yours was?? 

Thank you xx

enlarged lymph nodes - worried!

23 Aug 2018 13:22 in response to Ells2098

Hi Ells2098,

Sorry to hear this. I am still going through testing, so no unfortunately, but it looks like aggressive lymphomas are ruled out. My cough is still present, and I started to also get pain and actual swelling above my left collarbone within consuming a few sips of alcohol in april/may, so I convinced myself it was hodgkins. I was told by the drs in wales (I was at uni there) 'no evidence of lymphoma' at the end of June. I had swollen lymph nodes in my neck, above collarbone and under my armpit but with the use of ultrasound they didn't think they appeared suspicious. The largest one is 3cm x 1.4cm. 

The alcohol pain continued, and one in my neck appeared to grow, so I went for a 2nd opinion back here at home. I have had a pet scan, which showed some uptake in my right cervical and collarbone nodes, but no where else, so I am having a biopsy to rule out a low grade lymphoma (aggressive/hodgkins would have shown higher uptake or 'lit up' more on my scan). My uptake was scored at around 3.5, which could be a false positive caused by inflammation, which honestly is the most likely cause.

Anyone else here who may read this and have experience of brown fat, is it easy for the radiologist's to read through? I had uptake in axilla and mediastinum which was deemed consistant with brown fat, but it has been playing on my mind a little that it may have 'hidden' something.

My advice to you, ells2098, is DO NOT google. It drives you insane. Easier said than done, I know, but the chances it is not lymphoma is much greater than the chances it is. Google is a dangerous place. I was absolutely convinced I had hodgkins because of my alcohol reaction yet the lymph nodes on the side that hurts and swells (so much that a lump is visible) didn't even light up on my scan. It is my assumption that perhaps I have contracted a virus which is almost 'mimicking' lymphoma, as this can happen too. 3 weeks is not an awfully long time to have a swollen node, sometimes we contract viruses and infections which are not detectable because our immune system is working well and fighting them off. I understand you will be anxious, and you should absolutely push for the right tests, but don't make my mistake and convince yourself of something before there is clear evidence as all it will do is raise your stress levels - making you feel ill and possibly experience other symptoms. 

Hope it all goes well with ENT Xxxx

enlarged lymph nodes - worried!

23 Aug 2018 13:50 in response to SunshineEm

Also a quick thought, have you been tested for glandular fever? You probably have, but I had it just over 2 years ago and I didn't feel ill at all at first! It took quite a few weeks to come on but I looked 'puffy' with swollen glands and tonsils, didn't go to the dr because I didn't really think much of it until suddenly it almost erupted into action with my one tonsil ridiculously huge and I felt very ill then! 

enlarged lymph nodes - worried!

23 Aug 2018 15:34 in response to SunshineEm

Hi SunshineEm, 

Thank you so much for getting back to me so quick! I am so sorry to hear you haven't got a difinitive diagnosis yet, but thats positive that it is not an agressive lymphoma. I really hope that you don't have hodgkins or any form of lymphoma, and I hope they give you a simple and easily treatable answer! 

Thank you so much for your advice, I must admit I have been on google way to much and is has driven me mad, I have been soooo worried! Today it feels like someone is strangling the left side of my neck, and it feels like something is stuck in my throat, it is awful. I rang the doctors and it turns out they never sent off my referal to the ENT so that stressed me out even more so I have got to wait even longer. 

In regard to your glandular fever idea, that is something I hadn't thought of. I got tested for glandular fever last year after a horrendous case of tonsiltis but it came back negative, I may possibly have it now, as it is said to take 4-8 weeks for symptoms to show? I will mention that and get a blood test done (my worst nightmare lol). Just hoping it is nothing sinister. 

Thank you so so much for getting back to me. I wish you the best of luck with your biposy. If you can please keep me updated and I will too. xxxx

enlarged lymph nodes - worried!

24 Aug 2018 21:19 in response to SunshineEm

Hey!

im having the exact same problem! 2 in my neck and 3 in my groin since April  and all blood tests and Ultrasound scan came back fine. Now I’m being referred to the haematologist for further checks as more lumps came up. My lumps don’t change shape though, they grow to about less than 1cm and stay there, and moveable (ish). Tight chest, no other symptoms except some aching where the lumps are and some tiredness (but not exhaustion).

I feel your frustration being told everything is “normal” when lumps are still present! Have you had any results  back or anything to say what the causes are? I’ve been told it’s very rare but you can get a bacterial virus without actually being ill. 

I am going crazy with google and have diagnosed myself with every form of cancer. It is taking over my life. The anxiety is so bad and I’m getting so stressed about it!!!!

i really hope your results come back clear! Keep me updated Happy x

enlarged lymph nodes - worried!

25 Aug 2018 01:19 in response to Jasmine27

Oh no, sorry to hear that. Google is an absolute nightmare, I know the feeling soo well and it really is horrendous! But we do it to ourselves unfortunately... you just have to think, IF it is cancer, it will be found. IF it is lymphoma, it is extremely treatable. Don't let your head run away with you with fear as the chances are it isn't, the drs see so many people with swollen lymph nodes all the time and i think its something like 0.4%  turns out to be cancer!  But if it was, you would get through it and yes it wouldn't be pleasant but you are much stronger than you think.

No they don't know what, it might potentially be a low grade lymphoma but the biopsy will reveal that... I haven't had it yet. My bloodwork has been fine too, i've had so much taken for all sorts of autoimmune things etc. I was slightly folate deficient in april and still am now but other than that my blood is fine. Did have a very slightly raised ESR in april but the gp referred to this as a red herring at the time and all my blood tests since have been fine. Haemotology will give you all the right tests, they test you for literally everything under the sun, HIV, hepatitis, autoimmune etc. Aswell as checking kidney, liver, LDH levels and so on. They will probably give you a ct scan too. 

Try not to worry, less than 1cm isn't technically enlarged even if you can feel it - I don't mean to make it sound trivial but I wish I had someone telling me all the facts back in april! the drs consider my 3cm x 1.4cm one very small, which it really is compared to most lumps which turn out to be cancer! But to me it feels huge haha!! If you are slim you are more likely to be able to feel them under your skin too, especially in the groin, I can feel loads but they didn't light up on my pet scan so they are fine! Stay away from google, and try not to become worried unless the drs tell you to worry! A positive mindset makes all the difference - i'm only just learning this.

I will report back once I have biopsy results, i'm seeing ent for him to book excisional biopsy next week, have a FNA week after (don't know why i'm having 2) and then have an appointment with oncology again at the end of september to get the excisional biopsy results... so it will be a while unfortunately! X

 

enlarged lymph nodes - worried!

28 Aug 2018 14:40 in response to SunshineEm

Hi, During a moment of weakness I went back to google and found some information on a rare condition called 'Castlemans Disease". It has many of the symptoms we are describing particularly the swollen groin lymph nodes that you two have but I don't. It says that the disease is NOT cancer but mimics it. Ill insert the link here if you wanted a read, just thought maybe it was worth mentioning at your next appointment SunshineEm? https://www.cancer.org/cancer/castleman-disease/about/what-is-castleman-... I am still panicking, and it feels like I am being strangled, and feels weird in my me neck when I swallow, like something is stuck! 

Please let us know your biopsy results, and I couldn't agree more with you about the positive mindset, i've been forcing myself to try and remain positive. Hope is all okay for you both. 

 

E xxx

enlarged lymph nodes - worried!

30 Aug 2018 15:11 in response to Ells2098

Hey Ells2098

have you had any more info on your symptoms? I’ve just been referred to a haematologist today so just waiting for the appointment to come through. Will let you know how it goes. Woke up with night sweats last night! Was so annoying, had my window open too!!!!

im bad for googling too so please please try not to do it as it will increase your anxiety even more. I’ve learned the hard way and now all I have to do is think about the situations I’ve researched and then sends me into panic.

keep positive and keep going back to the docs to get more information. Are you allergic to anything? Do you smoke? Also anxiety makes the muscles tense and sometimes makes me feel like I can’t breathe and something is stuck in there.

i hope everything will be okay for you xx