Petrified- 6 year old with 3cm mobile neck lymph node- anyone had similar?

[Justamuma]

Hi everyone,
I’m really hoping someone can help me get through until Monday because my health anxiety has completely taken over.

My daughter is 6 years old.

Back in February, I noticed an enlarged lymph node high up on the left side of her neck. Our GP referred her to paediatrics and also arranged blood tests before the appointment, which all came back normal.

She was seen by a consultant paediatrician in April when it didn't go down. The consultant examined her thoroughly, including all of her lymph node areas, chest and abdomen. She felt what was there was actually two adjacent soft, mobile reactive lymph nodes around 1cm each rather than one large node. She wasn’t concerned, didn’t think an ultrasound or any further tests were needed, diagnosed reactive cervical lymphadenopathy and discharged her. She said if it became significantly larger in the future then we should come back.

The lump never completely disappeared, but I’d accepted that because I’d been told reactive lymph nodes in children can stay enlarged for a long time.
Over the last week I’ve become convinced it’s grown. Around the same time she had a few sneezes, complained that it hurt when she swallowed and pointed to the lump itself when I asked where it hurt. She had one morning where she seemed a little quieter than usual and didn’t eat much breakfast, but later that day she still went to playscheme, did 1½ hours of cheerleading, ate her dinner and played outside as normal. She has had no persistent fever and no weight loss.

We saw the GP today. He spent quite a while examining her. He said he thought it felt like one mobile lymph node and measured it at around 3cm. He couldn’t feel any enlarged lymph nodes anywhere else. He examined her throat and ears but couldn’t find an obvious infection. He also went through the red flag checklist with us, has arranged repeat blood tests and said the current guidance is to review it again in six weeks to see if it reduces.

If I’m honest, hearing “3cm” completely floored me. My health anxiety has gone into overdrive and I’ve convinced myself it’s lymphoma or another cancer. I know Googling has made things much worse, but I’m really struggling to think rationally.

I’ve booked a private paediatric appointment for Monday evening because I know I won’t cope mentally with six weeks of uncertainty.

I suppose I’m looking for two things:

Has anyone else’s child had a mobile cervical lymph node around 3cm that still turned out to be reactive?
If you’ve been through something similar, what happened and how was it investigated?

Please be kind. I know my anxiety is colouring how I’m seeing this, and I’m trying really hard to stay balanced.

I’m just a very frightened mum at the moment. My son had meningitis at 4 weeks old showing barely any symptoms so it's really affected me.

Thank you

Did the gp say it’s reactive just by how it feels or how did they come to the conclusion it’s reactive?
But signs are good it’s just an enlarged lymph node - it’s moveable and presumably feels soft.
However I’d feel better with more investigation if they’re saying it’s 3cm and has not gone down and may have grown.

@pastadishthe GP today didn't say much, other than let's watch it for 6 weeks and see if it goes down and I'll order some blood tests in the meantime. It was the paediatric consultant who felt them and said reactive back in April. She measured them at 1cm then and said it felt bigger because there were 2 together. They never fully went down but they are definitely bigger this weekend than they were before.

I don’t think even a consultant can say whether they are reactive or non reactive just by feeling them.
They would have decided it’s more likely to be reactive based on the fact it’s moveable, it’s presumably soft and the size of it also an absence of other symptoms and maybe the presence of cold symptoms or an infection, and bloods were fine.

It’s very worrying, but the vast majority of enlarged lymphs are totally non serious and can stay enlarged for quite a while in small children.

Your private doctor may decide the same but want an ultrasound to be sure. The ultrasound would be able to ascertain much better if it’s reactive/non reactive. But if they don’t offer an ultrasound then there’s probably nothing to worry about and just keep an eye on it and see if any ‘B’ symptoms develop

@pastadishI really appreciate you taking the time to reply thank you so much. Yes sorry I should add she explained that they were soft and mobile when she first felt them. Still the same today, just now 3cm instead of 1cm. Monday feels like such a long time away.

It’s very worrying and I hope on Monday the doctor does order an ultrasound so you can get more answers as it will put your mind at ease.
All the signs are very good that it’s just an enlarged lymph and nothing to worry about.

Unfortunately I know too much about this for the wrong reasons, but my dc’s lump was very hard and not moveable the doctors knew straightaway there was no wait and see.
But obviously nothings ever the same so I would always tell anyone to push it as far as you can and if you still have concerns do what you can to rule everything out. An ultrasound would give much more answers however I think there’s a referring criteria for most things and your daughter may not have met the criteria for an ultrasound yet (someone who works in healthcare can say if this is correct) but a private doctor may if you’re paying for it

Oh @pastadishim so sorry to hear that - thank you so much for taking the time to offer me some reassurance despite your own story. I really hope your DC is ok now!

Just wondering if anyone else is up awake at this time, having such dark thoughts 🥺

I’m awake OP.

I had an enlarged lymph node on the side of my neck that was discovered because it was very obviously protruding out (you could see it when looking at me straight on). Came across it while I was on holiday at 10 years old. It would fluctuate in size depending on illness or if I was generally run down - if I had a cold or a sore throat it would noticeably increase in size but once I was well again it would reduce back down to around pea sized and no longer be visible.

I still have it now at 33 years old.

Thanks so much @HolyMerlotfor replying ❤️ the trouble with my DD is that its remained visible this whole time (albeit not as large as it is now) and there's no obvious cold or anything on her throat they can see 🥺

As PP have said it sounds entirely normal.
Those lymph nodes are supposed to be big in children. They drain the entire head and neck - skin, ears, eyes, nose throat, mouth. That's alot of areas that have high bacterial/ viral load. Just because you don't 'see' infection doesn't mean it wasn't there.
I do not read anything in your post which makes me concerned and neither has your doctor. The right things are being done. An US may help to reassure but that is to make you feel better and isn't urgent.

I have had consistently enlarged lymph nodes in my neck for probably 5-10 years.Had them checked several times just to keep an eye on them, and doctor said no concerns but just to get re-checked if they did grow, so it is good you are doing that, but just to reassure you that it is possible that they can stay permanently! Good luck with the investigations, I hope they can delve abit deeper to put your mind at ease.

Thank you so much everyone- I'm really struggling to get past the size when she seems well and just keep spiralling so a bit of common sense talking is much appreciated xx

My 4 month old had an occipital lymph node that was palpable. At the time, if you googled, it said they should NEVER have palpable lymph nodes there and it always means metastases.

I did some watch and wait and then pushed for an ultrasound, for which we were in and out in about 90 seconds and they said a) it's fine b) it'll probably always be there, and probably always get a bit bigger when he's fighting a bug.

Would also suggest that the measurements of lymph nodes are not particularly precise especially when we're comparing measurements from 2 different doctors. One found 3 different nodes, and one found one big one? Might be a case of comparing apples with pears. Normal bloods, and your child still being well, is also reassuring!

Lymph nodes are odd things! They can be warning indicators, but they can also be a nothingness!

I also have HA (and commented on your other thread) so I do understand. I think in this instance the private paed appt can fall within the reasonable rather than unreasonable HA response. I hope it gives you some reassurance. But then to defeat your HA you'll need to work on stopping reassurance seeking and that is really bloody hard.

Thank you. Yes it’s all ok now, it was Hodgkins but enlarged lymphs are generally not lymphoma at all we were just unlucky, dc’s lump was in the collarbone (supraclavicular) and no other lymphs were visible even though cancer was present. But like I said this is relatively rare and certainly the vast, vast majority will just be enlarged for no apparent reason at all and they stay that way for ages. This is quite normal

An ultrasound will give more reassurance because they will be more able to ascertain if the lymph is reactive or not. I know you’d like this to be done but I can understand why the doctors so far have not ordered one because everything points to it being just an enlarged lymph with no serious causes.

This of course doesn’t help you and won’t make you feel better so hopefully the private appointment will help more.

You could all the GP about testing for Epstein-Barr virus (glandular fever). It's a very common cause of swollen lymph nodes in teenagers, and an underappreciated cause of similar symptoms in children. In teenagers it can cause their lymph nodes to be swollen for many months (mine were up and down for a year).

Hi Op
Normally blood and lymphatic cancer in young children is very rapid progression, so it’s reassuring that this lump has been there since Feb. It might still be a group of lymph nodes, it’s really difficult sometimes to tell by palpation if its a single one. The fact she’s otherwise well is also encouraging. The doctor on Monday can examine her again and send for an ultrasound. Ultrasound is pretty reliable in working out if it just looks reactive. Lymph nodes can take ages to shrink back down in kids.

Yep. This is it.

Most blood cancers in young children are fast growing which usually means a quick decline in their health with more and more symptoms appearing. When my son had lymphoma, his first symptoms started on a Wednesday and by the weekend he was in hospital as something was clearly very wrong.

@Kirbert2thank you so much for sharing your story and I'm so sorry to hear about your son. I hope he is doing well now xx

He is thanks, will be 2 years in remission next month. I hope it helps you feel a bit reassured that it is very unlikely to be cancer xx