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?

Hi, we are going through something very similar with our teen DS...we are also in this awful limbo.
Hoping we get answers tomorrow after yet another meeting.

From what you've written I'd say trust the system, sarcoma is extremely rare less than 1% of adults have this type of cancer, so as a Specialist he/she will be looking to gain as much information as they can to support you and your DD as best as they can.
I think for a second opinion, maybe look into finding out who are the Consultants in the NHS that specialise in this field (remember they do private as well) so if necessary for any reason you may have that as an option.
Build a relationship with the specialist you have already spoken to...and call them to ask if there are any other people in the team you should be speaking to with any concerns before the next scan.

You must be so worried atm and your DD, be strong...you will get answers, and TG it's been found you had the MRI and can do the CT scan next week.
I'd let your DD carry on as much as possible with half-term plans, whilst you find out in the background the best way forward from CT scan arrangements. No point worrying about what hasn't yet been organised. Trust them though to come back to you, but do follow up with a call when you are able to and have all your questions ready for that phone call. It will make you feel better and in some way in control (as much as you can be, at this stage).
Big hug to you and you guys will get through this.

As sarcoma is so rare, is your DD being seen at a major cancer centre eg Marsden or Christie? Maybe she needs a referral to your nearest one. Wishing her all the best in her treatment.

In my experience the nhs will consistently tell you that things will happen, whether they are going to happen or not.

communication beyond that can be a bit erratic and tricky as you have already found.

I would always always advise to research the best specialist hospital for your disease that you could reasonably travel to and get referred there. Never ever just go with your local hospital as the default unless you have researched and they are in fact the leading option. Especially for anything being described as rare and unusual.

That is the advice I would give myself if I could go back in time and it's the advice I give to others now. Right to choose gives you the legal right to choose where you're seen for first appointment. But in situations like this where you didn't know what you're dealing with at that stage, there are ways to transfer elsewhere to what would have been your first choice if you'd known what you were facing.

If you want a second opinion, you have to initiate that. And if you want control over choosing the best person for that then it's better that way.

Is The Royal Marsden within travelling distance for you? This is their page with all the information you need to get referred/transferred there (and to handhold GP about how to make it happen). www.royalmarsden.nhs.uk/information-gps/referring-patients/referring-nhs-patients

The best specialist centres will have similar pages.

The backup option if you're struggling to get your GP to refer to one for a second opinion (as the gateway to transfer care) is to make a private appointment with your preferred consultant and then they will be able to refer you into their NHS clinic.

Sadly, you cannot take the go with the flow option as the NHS is not fit to deliver that. But for future reference once you're under the best team/hospital available, the communication from them often then becomes "x should happen within this timeframe, if you haven't heard by y date please contact z". And when you contact them, they sort things.

Wishing all the best for your daughter. If you need someone to talk to, the Macmillan support line is open every day 8am-8pm and their website has lots of useful measured information. You don't need to wait for confirmed diagnosis before contacting them for support if you think it would help.

I'm very sorry your in this position (we're two months ahead of you) and the waiting was the worst part.
When we finally got a diagnosis/to see the right consultant it was explained that sarcomas are rare and in dc case the type of sarcoma is not usually seen in teenagers so was hard to diagnose. That when they look at the biopsies its not straightforward and that they often have staining done many times and many specialists look at them. Dc still doesn't have full diagnosis as the biopsies are now going through genetic testing and that takes 6 weeks (at a different hospital). However dc started a very aggressive treatment plan 5 weeks ago when it was decided they had enough information to give the right treatment as we were told starting the wrong treatment could be more detrimental than waiting.
We've found the teenage cancer trust helpful and the teenage specialist nurse at the hospital who was able to liase with the consultant beforehand to get support with symptom management.
Once we had initial consultation with the consultant things moved quickly and although it was devastating news we also felt some relief at the fact treatment could finally start. Dc was in hospital two days after seeing the consultant for pre chemo medication and started chemo two days later.
Since then its been a rollercoaster ride, in and out of hospital, dc physically changing and a range of emotions.
Its a lonely road because you really dont understand until you've been there. It might be useful to request referal for you for support from the hospitals counselling service I'm finding this gives me an outlet so then I'm strong enough for dc and siblings.
Does the hospital have a specialist teenage unit? Ours has and has been a very useful contact for updates and support.
I think the honest answer is that they are probably working very hard behind the scenes but you just dont know that and I remember being told its going to mdt meeting again and thinking can you all just stop talking to each other, talk to dc and me and get something done because no-one had explained what was going on behind the scenes.
My advice when you get to see a consultant is take notes, take a list of questions and get a contact number of a specialist nurse before you leave so that all those questions you have after can be asked.

Why not use your private insurance anyway? You can still use the NHS too, but get immediate advice and actually talk to someone straight away.

Thank you, everyone. It’s an horrible question to ask on here as you know those replying will have been through or are going through the mill themselves so I am grateful to you all for sharing your thoughts. I’m especially grateful to @IsItAllMenopause& @Mundanethings. You know that there will be others out there going through similar but it’s reassuring to put a name (or at least a MN handle!) to someone. It’s also helpful @Mundanethingsto know that the biopsy might not be conclusive. For some reason, that just hadn’t occurred to me!
Where are you being seen if you don’t mind me asking? DD is currently at Oxford which is one of the regional centres. From all of the research I’ve done - and I’ve done a lot - UCLH might be a better option (another regional centre but slightly better). Then there’s the Marsden but I was slightly put off that by the fact that none of the specialists there seem to specialise in the pelvis.
I will have a chat with DH this morning and start making some calls I think.

I think if I were in your position I would supplement the nhs with the private - use the nhs for the treatments and follow all the pathways, and ‘officially’ be nhs, but use the private to give you more detailed knowledge of clinical procedures and what should happen and when, risks and advantages, etc.

@pettingzoosforeveryone such an informative post. You know your stuff.
TY that’s helped me too for next steps if necessary. Things you wish you’d known sooner. Always so shocked at the beginning of this C journey, I did just go with the flow, but learning fast.
i do think though that across the NHS some primary care trusts perform differently.
My area seem to have a very good breast clinic and surgeons. But for rare cancers you must really need to pinpoint the specialists with expertise and understanding especially in teenage cancers.
I just wanted to TY x

Good luck @Thiscouldbe with your research for the best consultants in your DD cancer area. You are being a brilliant Mum at a very difficult time. I’d too recommend reaching out at some point for emotional/counselling for you/dh if you feel you need it. It can give you the space to vent and get support so stronger for your DD through this journey.
There is so much support available to you so do ask. Thinking of you for a positive day moving forward to get the information you need. Sending strength x

Firstly let me say that you have my sympathies for the position you’ve found yourself in and I really wish your DD well.
I’m a barrister specialising in clin neg and all I would say is this - abandon your usual polite British ways and push at this if your instincts are telling you something isn’t done that it should be, or being done too slowly. Just chase them. Ask questions and then more questions. Take up the time of the people you speak to. Nobody will blame you for doing so as a mother in your position.

I can’t say I got much sleep last night but I am so very grateful to you all. So far, everyone has been very nice and gentle about everything and this has removed those blinkers and made me realise that it is actually all very serious. It’s also reminded me that I kept letting them ignore me when in labour with DD and we were lucky to avoid serious consequences then. I won’t risk it a second time. It has also reiterated to me how fortunate our family has been in recent years with no one in the immediate family needing cancer treatment or any input from the NHS for anything more than a broken limb or cataracts.
My first step has been to email the specialist nurses who are, according to the website, always available. Except that the auto reply says that I am unlikely to receive a response for at least 48 hours!

The sleeplessness is awful, I'm still not sleeping well now but getting more than I was, the turning point was having a plan in place.
You asked where dc is being treated (we're up north) the centre is about 45 minutes drive from us. Distance is very important we've come to find. Dc has to check their temperature every day if its above 37.5 degrees we have to be in within the hour to start iv antibiotics. Also when dc has has chemo traveling is difficult (they've also started with travel sickness). Sometimes we are at the hospital several times in a week and in the last month we've had a 7 and 10 day stay. Dc will also be having treatment at Christies (Manchester) for 8 weeks as there is only two Proton beam therapy machines in England. So we're finding that at times care is being transferred around in dc best interest.
Re nurses can you phone them? I found ours very approachable and they have a text service which they respond to much quicker than email (usually within the hour during office hours).
I found that it all came together once diagnosis was confirmed and we suddenly got a social worker, a named specialist nurse, a named chemotherapy nurse and have the back up of a teenage unit to call upon but until that point it was difficult because the unknown is very scary and nobody could answer my questions.
After initial diagnosis (now know it was a wrong diagnosis) and before referral to a specialist unit l had a massive rant at one of the specialist nurses (i apologised before saying anything but said I needed someone to listen because I was trying to advocate for dc and it wasn't anything against any individual). It helped me get everything off my chest and also get someone to chase up referrals a week later we were sat in front of the oncologist and had a plan. I don't know if it helped speed things up but it helped me and dc felt I was doing something to support them. I've got over my being polite and realise that no one is going to blame me.for advocating for dc and that whats important is dc get care in a timely fashion.
Spending hugs.

I'd definitely call them @Thiscouldbe I don't think they are as responsive to emails. Lots of people will be off next week for half-term so you want to get a sense of urgency with them to answer your questions and make sure you have a named nurse/consultant you can talk to for information and can push for the scans etc.
Hope you have a good day and don't forget to eat.

Thank you for starting this thread. We are still waiting confirmation of whether it's sarcoma or melanoma. It's been almost 4 weeks since my DS went to the GP. Our lives have just been turned upside down. Our GP has given us both sleeping pills so that has helped a bit.
The worst thing is seeing our DS in pain and feeling like no one is doing anything. We are hoping we get a treatment plan over the next couple of days.

I forgot to say we are NW so presumably it will be at Christie's.

Thank you for galvanising me. I have had an extraordinary hour or so. There is no contact number given other than the general reception number who put me through to one person who put me through to another who said that any biopsy definitely wouldn’t be next week as there’s a long wait for such things! I then tried the NHS app to get my daughter’s referral letter only to see that that says that the appt from last Monday which we went to was cancelled! And so the referral letter seems to have disappeared but it does reference that we are on a waiting list which should be 18-24 weeks but could be up to 44 weeks! Without the referral letter, we cannot access the private healthcare that we have. So I called the GP and am 19th in the queue…

A very busy few hours with work so I have only just had a chance to come back and apologise for the fact that I didn’t follow up with a couple of you
@IsItAllMenopause yes, I feel as though my world has been turned upside down too. I feel as though I am living two lives in parallel at the moment as I haven’t told many people as I wanted there to be some sort of plan before I did. I am so sorry to hear your DC is in so much pain. Is he just on over the counter painkillers? Is the GP able to prescribe something more hardcore? We are in the bizarre situation that DD is in less pain as, since finding out there is something actually wrong, she’s stopped trying to push through the pain and I can only guess that that means that it isn’t aggravating whatever is pushes up against quite so much. (I like your username btw!)
@MundanethingsI am so sorry that you are going through this. Thank you, again, for sharing as it is the best insight so far into what we might have in store. We are 12 mins from the local hospital and only 35 from the nearest specialist sarcoma centre outside of rush hour so I will cling to that bit of good fortune.

Spoke to Sarcoma nurse who said they are going to treat it as a sarcoma. It's too big and complex for surgery so they are going to start chemotherapy next week. Devastated. But trying to be positive for our DC. It still doesn't feel real.

Oh! @IsItAllMenopauseI am so sorry to read this. It just seems extraordinary that a month ago this wasn’t part of your family and that now your DC is about to have chemo for something that doesn’t quite have a name. Many hugs to you and your family.

I know...it just seems so surreal. Like a horrible nightmare. I literally begged the sarcoma nurse to ask the consultant if they could start the chemotherapy this week as he is getting worse every day. But they can only fit him in next week. It's just heartbreaking. I hope your DD gets treated soon. It's just torture waiting and wondering if you should be doing something to hurry them up.

@IsItAllMenopause I'm sorry your in the same boat. When we got (partial diagnosis) and told could start chemo the week after, dc was having worsening symptoms to the point two days after I rang the nurse and said dc needed chemo or symptom control and within the hour we were in hospital. Dc then had a day where they tried to stabilise things when they couldn't they started chemo early. So if things get to the point you think its too much for dc get back intouch.
I'd also say if dc can manage something and wants to eg meet up with friends get them to do it since chemo started dc has struggled (even more than before chemo).
Do you know the regime? Have you got a plan? That really helped dc feel like things were happening. Dc is on IVADo for 9 months with 8 weeks of Proton therapy starting December.

Thank you Mundanethings. We don't really know what the treatment plan is yet. He's really not well at all. The growth is very large and he's really uncomfortable. It's the worst thing ever.
Sorry you are going through this too.

My son had one of the more common children's cancers a few years ago and even then, my experience is that you have to chase and challenge as much as you possibly can. My son experienced some rare complications due to my initial naivety and doctors with the attitude that it is incredibly unlikely to be something sinister like cancer but when it is your child who has cancer and things are delayed due to the fact that most of the time it it isn't cancer, it certainly doesn't make you feel any better.

Depending on your child's age too, I'd also be thinking about if a children's hospital is more appropriate as childhood cancer vs adult cancer can also present differently too as well as potentially have different outcomes etc so you may want her to be under a paeds oncologist if she isn't already.

Best wishes xx