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

It isn't unusual for children to have enlarged lymph nodes and they can stay that way for a long time without anything serious behind it which thankfully sounds like is the case with your daughter.

If she’s had the enlarged lymph since February and there are no symptoms and the scan doesn’t detect anything the chances of it being lymphoma are very very low probably zero.
However it’s not correct to say that if there are no symptoms it is not lymphoma my dd had no symptoms all, not one, only one lump. The lump was the red flag because of how it presented but the cancer had already spread from the neck and was in the chest. The accompanying symptoms are called B symptoms, so dd’s staging was A as there were no B symptoms. We have no idea when it started or how long she’d had it for.
Im not saying this to scare anyone because I do think your daughter is fine her lump is not suspicious and the scan confirms it, but it’s not correct to say there will always be symptoms and people should be aware of it.

@pastadishthank you so much for sharing your story I agree that's really important and it fits with what I've read about there often being no other symptoms. Can I ask did your DDs lump present as concerning on ultrasound or did it look normal on there too?

I actually don’t know what the lump showed at the time (or can’t remember) but they did a fine needle biopsy at the same time.
There were a few people in the room not just the ultrasound person so they were ready to do the biopsy. I assume it didn’t look normal, but it was an ent consultant who ordered it as we were sitting in her office the next week after seeing the gp and she felt the lump. Also before that an X-ray showed a shadow in the chest.

I know everyone is different and lumps present differently, but I know of people
who have had raised lymphs and gone for an ultrasound and they can tell that it’s a normal looking lymph and there was no other follow up. So while it’s certainly not diagnostic in itself it’s an indicator if more tests are needed.

I'm assuming your daughter didn't have no symptoms with a lump for months? That's what I was meaning as lymphoma in children tends to be high grade which means fast growing. No symptoms for months so as you said, very low chances, probably zero.

My son has had lymphoma too. It was obvious within a few days that something was very wrong as the lymphoma caused a bowel obstruction and he needed emergency surgery. He had vomiting, pains in his tummy, weight loss and night sweats. He actually didn't have any visible lumps.

I hope your daughter is doing well now.

Yes she is thank you and I hope your son is too.
We have no idea how long she’d had it for, it could have been any length of time. The lump was not really visible as it was in the collarbone, but if it had been in the neck then it would have been visible as it was quite large and it would have been noticed sooner.
The cancer was in the neck in three places and in the chest and there were no B symptoms at all. The cancer in the neck was not raised and not visible.
No one mentioned how long she’d had it for and I don’t think I asked but I understand Hodgkins generally spreads moderately fast so weeks to several months for the spread between lymphs.

He is thank you. Glad to hear that your daughter is.

Did your daughter have Hodgkins lymphoma or non Hodgkins lymphoma? My son had non Hodgkins lymphoma. He had it just in his bowel which caused a bowel obstruction. That's how we found out about it, I thought he just had a sickness bug at first.

@Kirbert2@pastadishim SO glad to hear that your DC have recovered and I want to thank you so much for sharing your stories and advice with me xx

It was Hodgkins. I don’t know too much about non Hodgkins, I know there are many different sub types.
So I don’t know exactly how long it was there for but I don’t think it was that short a time because of the spread, it was in 3 or 4 places. Eventually probably there would have been symptoms, but I think it was there for a few months at least. For some reason I never asked, maybe as it didn’t matter at that point.

Sorry it seems to have gone off on a cancer tangent! I don’t think that’s what your daughter has, from what I know about lymphoma in 6 months there would have been some sort of progression, maybe she’d start to become unwell, but everyone should always be aware of changes in any part of their bodies and get it checked out so you did all the right things.