So sorry to hear your news, can I ask what they symptoms were? 

Painless lump in back of the throat, discovered by chance. No other symptoms whatsoever which makes it very unusual

What tests did they do? My boy has a lump in his neck that he is getting an mri on tomorrow to check everything out. 

It was removed within two weeks of it being seen - the diagnosis was given after tests in it post surgery 

although he had bloods, ultrasounds and chest X-rays that all came back negative too prior to the removal surgery

It was removed within two weeks of it being seen - the diagnosis was given after tests in it post surgery 

although he had bloods, ultrasounds and chest X-rays that all came back negative too prior to the removal surgery

No wonder you have such a shock then did he get an mri before they removed it or just removed it because they seen it? Strange that the bloods were all fine, how did the appointment with the oncologist go?

No, no MRI

but he is having CT tomorrow after the appointment - the appointment threw up more surprise - it turns out it's slightly different type than we were told, even more rare, with characteristics not observed before. Mind, blown

So, no official treatment plan yet, but some kind of chemo regimen to follow

Such a shame for you all what is the new type they are saying it is? I'm sure getting plan for treatment in place will give you something to focus on and that he will improve with the treatment 

Same 'type' but with different genetic rearrangements - yes, it's a comfort knowing he's being seen now

Hi just wondering how long it took for results to come back after removal. My son is under a paed for swollen lymph nodes and now he is concerned about 1 under the jaw. Wants an urgent us scan on Monday and mentioned possibly removing it to examine

so sorry that your son has had that diagnosis. Must be very frightening for you all

xx

Hi,

so sorry to hear of your news - it's heartwrenching and the waiting is so hard. 
It took quite a long time from removal to diagnosis as it turned out his was very rare and newly entered into the guidelines so there was a lot of extra tests put in - around 4 weeks

best of luck

Thank you so much for replying! How is your son now? Has he started treatment?

I think the scan will be today. Think it's a case of getting the call and going straight there. But hopefully will get some answers soon

xx

Hi,

he's ok, he's started treatment and three cycles in now - a bit of a bump becoming badly neutropenic and required a week in hospital, but keeps bouncing back and dealing with it well 

I feel for you, the waiting before is definitely the worse bit - once you have clarity it's so much easier to cope with

x 

Oh it must be hard at his age but fingers crossed he responds well to treatment.

xx

My son had his scan today. They said they all just look like swollen nodes but not sure why. They are going to repeat it in 3 months and then possibly  remove. The biggest one under the chin is a couple knitted together x