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enlarged lymph nodes - worried!

26 Apr 2019 18:14 in response to Jolamine


After 2weeks of waiting for my referral to come from the soft tissue(sarcoma) team i have decided to go private with the doc the nhs had referred me to. Then got a phone call to say they had a MDT meeting and the orthopedic surgeon i had been referred to is happy to see me in the private clinic. So surely if it was anything sinister i would be advised to see another doc. Hope u all well xxx so my app is in thursday in private clinic. Cxx

enlarged lymph nodes - worried!

27 Apr 2019 12:01 in response to nicci20

I hope everything goes well at your appt in Thursday Nicci, fingers crossed for good news for you x 

I had my endoscopy yesterday, I hated it as expected but got through. The nurse was lovely and was a massive help keeping me calm. She was amazing. They looked at my oesophagus, stomach and small bowel and all is "pristine" they also tested for H Pylori which was negative. Whilst I'm obviously relieved they didn't find anything sinister (or anything at all!) it does leave me wondering why I'm still suffering with daily nausea and indigestion. My glands are all still up and I'm back at the GP on Tuesday. So far so good for me  but a bit like Dave I'm just keen for some answers as I'm definitely not feeling my usual self and no one seems to have any idea as to why.

Thinking of everyone x 

enlarged lymph nodes - worried!

27 Apr 2019 12:43 in response to Littleoldme

Hi Littleoldme,

Well done for going through it and I am pleased to hear that this phase of the search has not revealed any problems. Did they say what could next be done or is it a case of going back to a GP to discuss the next step?

I guess they could CT scan your abdomen or perform a colonoscopy (trust me, the worst bit of that is actually the laxative prep the day before!).

I’m looking forward to Monday pm when I get to ask the ENT Specialist ‘what next then?’. I suspect the answer will be an MRI of my neck and head.


enlarged lymph nodes - worried!

27 Apr 2019 19:03 in response to Littleoldme

Sorry if I’ve missed it in the thread, but have you had any investigations into the raised glands yet? Good to hear nothing sinister was found, but can totally understand that’s annoying in its own way, as you’re no further forward!

enlarged lymph nodes - worried!

27 Apr 2019 19:09 in response to DaveW1970

Dave, totally with you there! I’m a very logical person (bit of a control freak too!) so in my mind they must be swollen for some reason, I find it hard to accept when my gp just says not to worry about it. I’d like to know and understand the reasons, even if it is nothing to worry about. Hope your ent appointment goes well.

enlarged lymph nodes - worried!

27 Apr 2019 19:12 in response to DaveW1970

Thanks Dave. Back to my GP for next steps if they feel there are any to be taken. I already have an appt on Tuesday so I will discuss my gastric issues then too. Hopefully keep moving forward, however slowly. Did you get your ENT appt for your glands? I was referred for an ultrasound and they said a CT would be next if they didn't settle, ENT was never mentioned, perhaps because the worst of my gland swellings are at my collar bone. I hope the appt goes well for you and you get some answers. 

Hi Becky, 

I have had an Ultrasound for my glands, the consultant said when he did it he didn't see anything of concern. My gland above my right collar bone is very large, easily visible by eye without having to look for it, but he appeared completely unconcerned. He did say a CT would be next if my GP felt it was necessary, my GP called a few days after my Ultrasound and asked to see me so I have that appt on Tuesday. Not sure what to expect! x 

enlarged lymph nodes - worried!

27 Apr 2019 19:23 in response to Littleoldme

I think any cancer or suspicious presentation of lymph nodes can definitely be spotted via ultrasound so this should put your mind at ease somewhat. 

I had an ultrasound for enlarged lymph nodes 4 weeks ago, the lymph nodes on my neck are big and superficial to the surface which is why I can feel them so much, however they don’t look suspicious at all and 3 doctors have seen them (1 a specialist, 1 radiologist doctor, 1 ENT surgeon) and they all say they look normal, however incidentally they did find a tumour in my thyroid gland and they were on high alert straight away, they classed it as suspicious because of the presentation of it, hypervascular, hypoechoic, solid, no halo etc etc, I’m having surgery on Friday, after biopsy results were inconclusive, to have it removed then will discuss ct scans etc. 

If they don’t seem fussed then it’s not going to be anything sinister in that area of your body x

enlarged lymph nodes - worried!

27 Apr 2019 20:18 in response to becky1984

Unfortunately this mindset can lead to a lot of future anxiety if it spirals. I too for a long time was certain that they MUST be swollen for a reason, and was very unhappy with no explanation, and in fact I am about to undergo therapy for health anxiety specifically because of the pattern of this kind of thinking. It is in our best interests to trust our doctors judgements. I’m not a medic, but I am also aware that it is possible to have swollen lymph nodes for “no reason” - that being, reasons which aren’t visible to us. Sometimes our body is fighting off a virus without us outwardly showing symptoms, and lymph nodes can remain swollen for a long long time after a virus or illness has left the body, and may never return their previous size. All symptoms should be checked out by a dr, but it is important to try and trust their judgements as best we can!

That being said, i had been having bowel issues and gynae issues, which led to a colonoscopy (which was normal) and now my GP has said we need to consider endometriosis. Not sure if that could be related to my swollen glands too, but if it is, i’ll sure be happy for an explanation!

Really sorry to hear of your diagnosis charrrrhx, I hope you are doing ok x

enlarged lymph nodes - worried!

27 Apr 2019 20:47 in response to SunshineEm

The ultrasound I had on the 11th April was deemed normal and not even worthy of a biopsy, but there are still tender points on my neck and the mild tinnitus (like when you get home after a gig!) and constantly tired eyes (that’s a way of describing it I suppose) have me less reassured than I otherwise would be.

I think a clear scan would finally put me at ease, but “it’s probably a virus” doesn’t tell me how it happened and how I can prevent a reoccurrence. I know that sounds pretty ungrateful given the serious things it could be/could’ve been (assuming it is viral), but every time I read about viral infections I see periods of 3 weeks quoted (not the 10+ weeks so far that this has hung around). I suppose my lack of knowledge of true cancer symptoms doesn’t help really, and makes me fear the worst perhaps unnecessarily, but they say it does creep up on you (hence me having heightened suspicion!).

Sorry for the waffle, just sharing my mindset and probably revealing what a prize wuss I’ve become!


enlarged lymph nodes - worried!

27 Apr 2019 21:32 in response to DaveW1970

Dave, if you are feeling unwell then of course it makes sense to want to know why it happened and how to stop it happening again - its really frustrating to not know a reason and that doesn’t make you a wuss at all! I think its always important to persevere when you feel that something isn’t quite right and make sure you have all the appropriate tests/scans that you need, get a second opinion if necessary (I did), but if they come back with a clear result & multiple doctors aren’t worried then thats all that can be done for now and we should let ourselves  be happy in that there is no explanation rather than a diagnosis of cancer! And I say “let” because if anyones a bit like me, anxiety can still try to steal that happiness even in periods of what should be great relief - the damn thing!

enlarged lymph nodes - worried!

27 Apr 2019 22:31 in response to SunshineEm

Cheers Em, that’s a helpful post!

I’m actually less anxious than a few weeks ago (especially given the clear chest X-ray and faded shortness of breath which was thankfully short-lived).

I’ll try to ensure the ENT guy takes me seriously despite the clear ultrasound.

enlarged lymph nodes - worried!

29 Apr 2019 15:54 in response to Littleoldme

Good that they seemed unconcerned. Everything online is so negative and scary about collar bone nodes! Hope that it reassured you and you can get some proper answers soon.

enlarged lymph nodes - worried!

29 Apr 2019 15:59 in response to SunshineEm

I think you’re right, it’s a dangerous mindset. Obviously I’m hoping that the gp says it’s nothing to worry about and that’s the end of it - however, I already know that the relief would be momentary and half an hour later I’ll be wondering if she’s missed something/not taken me seriously. I’m dreading the appointment to be honest. I’ve seen her a lot recently for various things that I’ve panicked over, and I really think she’ll be rolling her eyes when she sees it’s ne again! I have a few minor symptoms and I’m not sure if I should mention them as they’re quite non specific and might just be anxiety. I feel the more random little things I come out with the less seriously she’ll take me.

enlarged lymph nodes - worried!

29 Apr 2019 18:03 in response to becky1984

Interesting you should say that about non-specific symptoms. The ENT guy reiterated that the ultrasound was clear but wasn’t interested in my eyesight issues, tinnitus and headaches - and suggested I see a neurologist if I’m really that concerned. When I suggested the Omeprazole he’d prescribed could be causing the tinnitus, he was non-committal and just said I should continue the remaining month of the 6-week course!

So, I need to decide weather to wait for an improvement or see a GP to get referred to a neurologist. I’m sounding ungrateful again aren’t I?!

enlarged lymph nodes - worried!

29 Apr 2019 18:15 in response to DaveW1970

It’s difficult when you have lots of different symptoms that you feel maybe connected but each specialist is only interested in theirs in isolation. I think I’m guilty of trying to tie everything together as I’d like a nice neat answer and possibly that means I see connection that aren’t there (not suggesting you’re doing that though!) can’t hurt to go back to your gp about those issues, if you’re like me you probably won’t rest until you do! Have you had any tests for autoimmune conditions? Headaches are pretty common with many I think (along with swollen lymph nodes) and may fit your symptoms? Just a thought.