Advice please! “Very rare & unusual”. When to let the system do its thing, when to chase & when to challenge?

[Thiscouldbe]

We’ve had a bit of a bombshell go off in our lives as it turns out teen DD has a tumour in a muscle deep in her pelvis. She’d been pain for a while, nothing else was working so we went for an MRI and, hey presto, there’s a tumour.
This was 3 weeks ago. We were initially told that, due to her age, the referral would be expedited and we’d be seen in 48 hours by the local sarcoma centre. After four days, we’d heard nothing so I followed up and they hadn’t received her referral but they also said they don’t follow that guidance. Nor, for that matter, the two week pathway.
They did eventually get the referral and, after a lot of chasing and crying down the phone by me, it was discussed in yesterday’s MDT and we had an appt yesterday afternoon.
We saw the consultant who said that the MRI was indeterminate as to what it was, whatever it was, it was very rare & unusual and that she’d have a biopsy in a CT scan next week to figure out what to do next. That was it. No introduction to anyone on the nursing team. No acknowledgment of her being a teen. Not even a leaflet.
So now we’re sat waiting. But I’m not sure what we’re waiting for. And I’m wondering if I should have asked more questions yesterday. Presumably the biopsy would have been discussed in yesterday’s MDT but I don’t know who is doing it, how long it will take, what her recovery will be like. Perhaps more importantly, whilst the person we saw is a specialist in this area, the fact it’s rare, unusual and “so tricky to get to” (his words) are making me think he can’t have done many (any?) of these. So is he the best person? Or should we be referred to one of the other sarcoma centres? Or should he or we get a second opinion as to the best route for the biopsy.
He reassured us that, whilst it had taken a while to get to this stage, everything would now happen really quickly. Yet I feel like nothing is happening. Poor DD really wants to know as it’s half term next week and she has various plans with her friends and is worrying she might have to rearrange or cancel them (she is very much focussed on the immediate issues rather than the bigger ones, something for which I am grateful)
Into all of this is thrown the fact that we do have access to private health insurance. So far, we haven’t involved them as we keep being told by the NHS that this is the best system to be in and everything will happen quickly. But is it? I want to have faith and just be a cog in the system but nothing so far has happened as it should have done. How much responsibility do I have to take for this?

No experience of this sort of cancer. but dd did go through something very similar. My main advice is:
Don't be afraid to advocate for her
It is going to be a long bumpy road so pace yourself and look after yourself to..
Take notes, write down questions as they come to you ready for when see docs
Get support where can there are some fantastic charities who make it all a little easier.

I feel for you OP, sometimes things seem to move very slowly in the NHS. We are still waiting for the second results of a bone biopsy that my dad had in July. Happily in the meantime time we have learned from a scan that the cancer hasn’t spread.

They will need to look at the scan and get biopsy results to know what to do. I guess she will only meet the nursing team after any operation?

The communication is really rather lacking sometimes.

If you are treated at the Christie, or even if you aren't but can get there, then there is a wonderful place near there called Maggie's Centre. It's a couple of streets away from the hospital, not part of it, and is lovely and homely, especially if you've been stuck in clinical environments. They have some support groups there, and there is generally someone to talk to. It can make a hard day less grim.
I hope you get help, support and good outcomes.

https://www.maggies.org/

@Mundanethingsthat sounds absolutely brutal for your DC and your whole family.
@IsItAllMenopausehave you had any more information? How is your DS doing?
Two days of lots of phone calls and no real clarity, some hilarity and some more concern. When we were told on Monday by the consultant that the biopsy would be next week, I thought that was reliable information - that they’d planned the biopsy route and team in that morning’s MDT and already had a date in mind. How wrong I was. Apparently the route is still being discussed as is whether it will have to be under a general anaesthetic as it is so deep rather than a local. No one can give me any insight into when that decision will be made but I fear it won’t be until this coming Monday’s MDT, and perhaps even that is dependent on team members not being on holiday over half term. I did try the radiology dept too in case they knew anything but all they told me, in a fairly blasé fashion, was that it would be weeks before they had a slot for a biopsy to be done in a CT scanner! I am trying to give that member of staff the benefit of the doubt about her phone manner. She could have simply said she didn’t know yet rather than terrify me that we could be waiting weeks. The moment of hilarity was that our GP surgery are (unusually) being amazing and, in trying to give me proxy access to DD’s notes, actually gave me access to their side of the system including the ability to book appointments, issue order prescriptions etc! I am trying to reassure myself that, unlike the other DC on this thread, DD’s pain is manageable but I just can’t believe how stuck we seem to be. I am trying to encourage DD to plan as much as possible with her friends over half term as I realise it might all change very quickly.

Hi, our DS has been prescribed more morphine as he's in a lot of pain. We meet the consultant on Wednesday. Feels like a long time off. The feelings of helplessness are just awful.

That was the hardest stage for dc, no plan and symptoms not under control.
Dc was changed to slow release Oxycodone when we first met the oncologist which really helped (sees palliative care regularly for symptom control which is also very helpful might be worth asking for a referral).
Dc pain relief has more than halved since chemo started. We were told it would reduce pain but didn't realise how quickly it would.
Hope you get a plan on Wednesday and ds feels better on the morphine.

Thanks Mundanethings.
I can't even begin to tell you how grateful I am hearing from someone who has been through this awful thing.
We have a slow release morphine tablet (I thibk that's what it is anyway). We were saving it till bedtime but we will give it to him when his next lot is due. He'd barely had a paracetamol in his whole life up to now. How life can change.
Again, thank you for taking the time to reply.

Please don't be afraid to ask for more pain relief, different options etc if you think it isn't quite right for your child. As I said above, my son had a more common cancer seen in children (lymphoma) but he had very serious and unusual complications which included several surgeries in the end (surgery isn't typical with lymphoma, just chemo) and it did take a while chopping and changing to manage his pain.

He was only on morphine for 3 weeks because after that, it didn't seem to do much for him and I was told that the body can get used to it and it can be less effective for some people so something to consider. He ended up largely on oxycodone with a brief try on fentanyl which played havoc with his heart rate so it didn't last long. The pain team were involved with him and sometimes I did have to be firm and tell them he was still in discomfort and wasn't ready to go down on his oxy.

Thank you Kirbert2.
I will definitely ask for any alternatives but will have to wait till next week now.
Thank you for sharing your experience. It is very much appreciated.