Lump on baby's spine

[PinkLillies18]

DS is coming up to 4 months old in the month. After 4 weeks of being born he developed a lump in the middle of his back which feels it's just off his spine.
I was the size of a 5p then swelled to a 50p coin size, it's not red or any colour. It has since stayed the same size but it now hard. He isn't in pain from it or when it's touched it doesn't seem to be sensitive.
He went to see a doctor at the local hospital who booked him for an ultrasound.
The lady who was doing the scan had to call her 'head of team' in to look but they both said they haven't seen one like it. From what I know the report came back inconclusive.
He was referred to a consultant who then booked him for an MRI.
2 days later I had a call from my hospital saying he's being referred to Great Ormond Street hospital where they will want to see him within 3 days time and will discuss his case with me.
I'm just confused as to whether I should be worried for it to get sent to them. Nothing was disclosed over the phone from the local hospital other than the fact he's had to be referred.
Has anyone had any similar situations or have any advice?

Has he had the MRI?

Hi, yeah he had the MRI on Saturday and I got the call late this afternoon to tell me his case has been referred to the ormond Street hospital

Then it's hard to say but lots of niche specialties are now based in a small number of hospitals. Very few centres will have specialists in children's spines and Great Ormond Street might be the best place they can send you to get to the bottom of things.

Sorry to hear this - I hope you are ok? When is your appointment?

If you do end up staying in, I as other posters can, give some tips for cafes etc around GOSH but hopefully it does not come to that and they just want an expert opinion and an expert team to monitor it.

Will keep fingers crossed.

Thank you, I've just had another update. His appointment is in the Oncology department they said, not too sure what to expect from the appointment now. I'm trying to avoid google as much as I can.

Oh it must be very worrying. Try not to as much as you can. It could be a number of things. When is your appointment?

Yeah I'm trying not to overthink, they did say if it was a fatty lump or nothing to worry about they would call from local hospital and let me know. But I've since only had a referral instead. They said they want to see him by Friday the latest.

So it sounds to me like they haven't been able to determine what the lump is and it needs further investigation. They will want to rule out the worst possibilities first, hence oncology. It is possible they'll want to take a biopsy - if not on Friday then very soon but Id take some overnight things to the hospital just in case. With babies they really dont like to hang around, even if they scare you half to death in the process.

When ds2 was 6 weeks old a chance observation by a doctor led to a whole cascade of tests, scans and examinations. Within weeks he was under consultants of 3 different specialities. 4 months later they concluded that he was perfectly healthy (and remains so to this day). Based on this, I would strongly recommend that you try not to worry too much until they tell you in something to worry about.

That's made me hopeful! Hopefully they will do there tests and all will be fine. Do you know if Biopsy's are done at the oncology appointments?

I dont know. I doubt they are done in the appointment but they may send him straight from the appointment to get it done, or to have bloods done or for another scan whilst you are actually there (esp if youve had to travel a long way to attend). Or they may ask you to come back the following day or week.

No experience of this op but just wanted to say I hope it turns out to be nothing, you sound very level headed, good luck.

Lumps on children are rare and to ensure that nothing serious is missed, referrals are made to specialists centres who can make the diagnosis and provide treatment if necessary.
They will do a full neurological assessment, discuss the MRI and whether biopsy is necessary and do things like blood tests, if necessary.
It doesn’t necessarily mean it’s a childhood cancer but it’s possible, if unlikely. You might want to start thinking about how you would manage if you need to stay in London for some time. If it isn’t good news, things move very quickly. Do you have good family support? Hopefully you won’t need it but it’s good to think how you might manage. The hospital is very good at sorting out practical and financial support, if necessary.
Let’s hope it’s just a small cyst or something and your fears are not realised.

A biopsy would most likely require admission.

Thank you bobstersmum x

Yeah, I think I'm just confused as to what oncology appointment is as I'd never even heard of one before. I have no idea what they do in them and what to expect

@PinkLillies18 - here to give you a hand hold

Have you got someone to go with you ?

I've been in a similar position- had a child referred to oncology- happy to answer questions XX

Hi, yeah I've got a very good support network with family around me so I'm very lucky for that.
What happened during the oncology appointment you went to? (If you don't mind me asking)

No problem at all @PinkLillies18 , I wish I'd had someone to talk to before we went!

Do you know what oncology means?

Is it a department for when they aren't too sure what a lump could be, (cyst, rumour etc)?
I was told if it was a cyst or fatty lump I would receive a call from his consultant and a letter in the post. I already had oncology appointment booked for our local hospital next week, but instead got the referral to GOSH for this week.

Oncology is the speciality name of the department for cancer treatment. This doesn't mean he has cancer, but I think from the MRI and then a 3 day referral to GOSH that they are wanting to rule it out.

Sending best wishes to you all

Do you know if they can tell if the lump is cancerous just by the MRI?

They will probably have a good idea @PinkLillies18 but may want to do a biopsy to confirm

I'll be totally honest, oncology units can be a very daunting place when you don't know what to expect. I didn't know and came away feeling very upset and over whelmed. We now go for regular check ups at oncology and I'm used to it so it's much better.

Be prepared that the oncologist may be very matter of fact, it's their job, but another thing I found scary!

If you want to chat anymore feel free to PM me xx

They can't tell if a lump is cancerous just using an mri but in your ds' case they havent been able to rule it out eitjer. Lots of things cause lumps, most of them are not cancer but obviously that's the most serious possibility so they need to eliminate that possibility first - that's why unknown lumps get referred to oncology.

I think the speed with which they act can seem frightening. We saw a consultant one afternoon with my son and he called after 6 pm with an appointment for the next day at Alder Hey, where he was given every examination under the sun. But we're lucky they act quickly - imagine waiting for weeks for treatment for a child. It would be terrible.

Yeah just had another call and they want to do another ultrasound before he sees consultant so they must not know what it is from my local hospitals results and images.