best private hospital for lung cancer treatment (UK)

[houseHuntinginmanchester]

Mums been diagnosed with lung cancer stage 4.

We want a second opinion and private treatment.

Please if anyone has any experience or knowledge of the best private hospital that provides the best possible treatment for this cancer , please do advise.

I feel like my world is collapsing around me.

Don't torture yourself with 'why my mum?', really don't, it's pointless. Bad things happen to good people all the time and yes, it's not fair, but there you have it.

When I went through bad times (different circumstances altogether) it actually helped me to think 'why on earth not me?' in that I was able to see my own problems as just one of those random horrible things that happen and it stopped me from going round and round in circles asking 'why?' and 'why me?' and 'what did I do to deserve this?' or, even worse, 'what should I have done to prevent this?'.

Stop. Just stop trying to figure out the unknowable.
While it is rare for non-smokers to get lung cancer, it is not unheard of.

You now need to concentrate on going forward. Don't over think your children's' reactions either: what they say or draw is what they think, they tend to be very perceptive, but also accepting of what's happening around them. Don't lie to them to try and protect them, be honest, but age-appropriate: "I am upset because I am worried about gran. We don't really know what's going to happen yet" is a perfectly reasonable thing to say to a child. Don't say nothing's wrong if they see you upset or crying, because clearly there is and you're not saying so they might fret about something totally left-field.

I said upthread that chemo does not equal chemo, nor does cancer equal cancer: we talk about 'cancer' as if it were ONE disease and really it is not. You and your mother are at the very start of learning about something you never wanted to know much about and it will be an awful lot to take in.

I hope you don't have much longer to wait for her appointment

Oh, and cancer is a bastard. Just sayin'. It can help to get angry, rather than sad. Does not change a thing, but a good rant can be very therapeutic. I may be rather good at that

Thatsnotmy - that's really good to know. I've never heard of jimmys, although I probably will soon enough.

Thank you for everyone's replies.

Pacific - I do tell the dds that I'm sad because gran is poorly. Dd1 probably worries about me or her dad getting poorly too. Today she said in the supermarket 'if you're happy then I'm happy mummy', and got a very surprised smile from the woman behind us. I guess I'm just not ready to admit or accept anything else yet.

Her appointment is next week. I think that's when she starts her chemo. Absolutely dreading that. I know what you said Pacific, but I just can't help it. Everyone I've spoken to about it have said how much a person deteriorates with it and mil went as far as saying mum shouldn't get any treatment and just let things be. I don't know how people can give such insensitive 'advice'.

Right so I've just had a call back from Christies. Saying the consultant has looked at the records and providing one other piece of information is provided before then, he is happy to see mum for a second opinion next week.

I asked if this meant the treatment/diagnosis would differ and she said 'not necessarily, but it means that the consultant is happy to see your mum for a second opinion.'

Well if nothing differs, what's the consultation for then? Maybe I'm being naive.

House, I am so very sorry you are going through this. I write as the daughter who lost her mother to cancer. Firstly, I am presuming that your Mum is starting palliative chemotherapy? This is very different to full on treatment and the idea is to make her more comfortable and to assist with pain relief. In my experience of my own Mum and a couple of other family members who underwent chemo for this reason, the outcome was positive in terms of how they felt on a day to day basis. She can always stop at any time if it isn't for her and indeed it doesn't work for everybody.

I would also say that private treatment is no better than NHS treatment. My Mum was treated privately, they actually screwed up in a major way and she could have avoided a lot of trauma had they done things differently. I am not saying the outcome would not have been the same, her cancer has a very low survival rate and the outcome was not ever going to be good giving the grading of the tumour, however, I don't believe she gained anything other than having a private room if I am honest.

You have every right to seek a second opinion, but you must prepare yourself for the fact that that opinion might be exactly the same. We all look for a miracle in circumstances like these and pray that one comes along. I really am truly sorry for the ordeal you're all facing and send my best wishes

My DP was treated very successfully for one and a half collapsed lungs at the Royal Brompton in London two years ago after pneumonia was misdiagnosed by the GP as back ache
They are supposed to be one of the two best hospitals for lung and heart conditions and do have a private wing I think.

The point of a second opinion is just that - getting a second doctor to give their view. In some cases they might take a different view to the original doctors but in most cases if the facts are relatively straightforward the treatment/prognosis may be pretty clear.

If they concur with the doctors seen to date, what it does give you is some comfort that what your mother has been told is accurate and appropriate.

A second opinion can either confirm what the first opinion stated or can disagree with it.
It is important that your mum and you understand why and on what grounds whatever advice is given.
Nobody is going to be able to tell your mother what to do and to guarantee any kind of outcome and there are likely choices to be made weighing up possible benefits vs possible risks.
I hope it all goes very well

Thanks pacific. I don't understand the need for the fuss and an appointment and her coming all the way here just to be told that the opinion is the same, if it is the same, though. Couldn't they just tell us over the phone, or is that not the done thing.
The first woman I spoke to said if the opinion is the same then they won't waste your time with appointments and such and then the second time I spoke to her she said the appointment will be given whether the opinion is the same or if it differs.

I think that you are right to get a second opinion and to consider private care. There are several advantages to going private especially if you can go privately somewhere like The Christie. The first advantage is continuity of care, all appointments are with the consultant and secondly, and to me this is why I would always aim to go private, is because privately the doctors aren't tied to the cancer drugs fund and private insurance will often pay for drugs which are limited or not available on the NHS for cost reasons but actually show positive results.

If the second opinion is the same as the first, then you and your mother should be able to have confidence that the proposed way forward is the best and universally agreed one.
If they differ, then you have to try and understand how and why they differ. Many decisions in medicine at not black or white and while doctors will be able to make recommendations and follow internationally agreed protocols, individual patient preference does come in to the decision making. I have seen everything from 'I want everything possible to be done' in frankly hopeless cases, to 'I don't want any treatment other than for my symptoms so I can enjoy the trip of a lifetime I have chosen to spend my remaining time on'.

dreadingautumn, I think you need to be careful with what you are advising. What individual insurance policies will cover hugely, self-payers may look at 5 and 6 figure sums for cancer treatment, and while I agree with you that the lack of continuity of care in the NHS is an increasing problem, the flip side of that is that any patient will be discussed in a multidisciplinary meeting and not at the mercy of ONE individual. Wrt drugs, well, at least the meds provided by the NHS have evidence behind them and discourage the clutching at straws that vulnerable people will understandable do when scared.
I know where I'd want my/my mother's/my children's care to be tbh.

Thanks - I've also worked in the cancer arena for a long time too, and I also know that I would always prefer to go privately using NHS consultants. It's all very personal but my personal experience is that options privately are far wider than in the NHS and private would always be my preference and if it were my parents I would take the opposite view to you and only want them treated privately.

Yes, it is very personal, and invariable coloured by personal experience.

Which is why the OP/her mother need to do their homework and have confidence and trust in whoever ends up looking after her.
Really hard thing to do when unwell/terrified.

One step at a time, OP

I think it's very difficult to say go private stay NHS. Both have their positives and negatives and both can vary depending upon which hospital we are actually talking about. Similarly, the NHS is restricted by the fact it is a national organisation and won't fund everything, but private healthcare is there to make a profit out of people receiving treatment. Swings and roundabouts, there is no right or wrong.

Sorry to hear about your Mum OP. I wonder if it could be worth pursuing a second opinion via the NHS as well as the private one, not sure if you are trying to organise that but I know someone mentioned it. I don't know much about private healthcare, but hopefully others will be along soon who may know more re the face to face whether the consultant's view may differ or not.

Oh and I second MacMillan too! Fabulous people. My ex's Dad had cancer which they knew would kill him eventually as no one had ever survived a third round of treatment, they offered fantastic support for years to him and his family.

Hi House

So sorry to hear you're in this situation - it's just well and truly rubbish for you and your family.

I've recently finished treatment using a combination of both NHS and The Christie (I'm also based in West Yorks). I chose to go to The Christie as I really felt it was the best in the country - along with the Royal Marsden, but that was too far to travel.

What I found was the NHS just could not be beaten for the urgent 'front line' type work - eg I was in surgery within 6 days of diagnosis which The Christie couldn't match. But it's probably the softer side of the NHS where I think the budget cuts were obvious. I just found the after care wasn't quite as good and consultant appointments were much shorter and less frequent. To give you an idea, I had radiotherapy at The Christie and was told that they see 20 patients a day per machine, whilst the NHS part of Christie's have over 40.

But ultimately, my treatment and outcome was the same and pp are right - the consultants are usually the same whether you are private or NHS. It's more that you're buying better human care if that makes sense, not necessarily that there will be a better outcome. I was insured, but expect my treatment would have exceeded £30k and certainly wouldn't have paid that as it wasn't worth the difference between NHS/private.

This really isn't meant as a criticism of the NHS at all and I hope you manage to come to a decision you and your mum are happy with.

Very sorry to hear your news.

As some who works in palliative care and has seen a lot of people have both private and NHS treatment (plus personally seen my dad go through it) my thoughts to you would be:

There is very little difference in lung cancer in what treatment you will get first line either privately or on the NHS as the situation is usually quite clear cut. Also the best private doctors will all work in the NHS anyway.

Initial treatment decisions are taken by a group of doctors not just one specialist by themselves, which is why it won't vary very much - there will be specialist to interpret the scans, one to interpret the biopsy if there has been one, a surgeon to say whether they can operate and an oncologist to say what they can offer - and usually more than one of each of these too.

The main part of how treatment would very would be seeing your mum in person and seeing how fit she is - most treatments are very tough and so sometimes when you see the person you realise they just won't be strong enough for whatever treatment was being proposed. This is why, even though the Christie are unlikely to suggest somethig different to your local NHS hospital, they can't just say that without meeting your mum.

If you don't have private insurance already, you will find the cost of private treatment extortionate unfortunately. Also although it is usually a nicer environment as WinoHamster says it is terrible for emergencies and palliative care - these both get shoved back to the NHS straight away. We have a local private chemo unit - it is utterly lovely looking but if you turn up with pain, in the NHS a doctor would be found to come and see you, they would talk to palliative care for advice, you would be given pain relief etc. At the private unit, it's literally a chemo factory - they can give chemo and nothing else. My patient was rolling around in agony as they couldn't even give her a paracetamol, just the chemo.

Finally, the best place to have treatment is always the one nearest home. Having cancer, and having chemo both make you feel utterly lousy - a long car journey followed by a crowded waiting room is a nightmare. If your local hospital is small, that's even better - it probably won't be as crowded, the receptionist will remember your names, everyone will be more friendly. You will still get the same quality of treatment - almost all oncologists at small units will also work at the major units like the Christie.

Best wishes to you both It is a tough time with tough decisions. Your MIL isn't being totally insensitive (OK she might be if she's often like that) as many people do choose not to have chemo, or try it and stop, as when it can't cure you, you don't want to take something that ends up making you have longer but feeling dreadful. It's very difficult to know what to do for the best and each person makes their own personal choice.

Thank you to everyone for your support, valuable advice/experience, and kind words. I am so touched by the support I have received from everyone on mn and in real life. Xx

Ok I understand now why they'd need to see mum in person for a second opinion.

I know mil didn't mean it badly and I'm just being over-sensitive at the moment. I just got back from in laws with dh and the dds and I am so thankful for them. I can be myself with them at this time and we all feel comfortable and that actually means so much.

The words 'Palliative care' sound so dark and hopeless to me. My bubbly, funny, busy, quick tempered mum. Receiving palliative care for stage four cancer. Is this real? How can this be real. I don't want this to be real.

How's your mum now? My nan is in the same position got diagnosed in Feb she's 71. She had chemo it shrank it now it's starting to grow a l. They have offered her some more chemotherapy did your mum start chemotherapy?

my neighbour (early 40's) has lung cancer (I think stage 3) she had therapy on the NHS as part of a study where you are given therapy (gene therapy?) that gets your own body to fight the cancer cells and she now has only a couple of very tiny tumours. Ask to go on this study if possible.