My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Life-limiting illness

best private hospital for lung cancer treatment (UK)

45 replies

houseHuntinginmanchester · 29/09/2015 22:10

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.

OP posts:
Report
houseHuntinginmanchester · 30/09/2015 09:31

Bump

OP posts:
Report
Linus33 · 02/10/2015 12:38

I couldn't read and run. My mum also has advanced lung cancer. She's had a good year but things are progressing now.

She rejected chemotherapy as it wasn't curative and didn't want to risk feeling very poorly for the remainder of her life. The only thing that was offered to her was palliative care which she luckily hasn't needed until now. Sadly, she now has brain metastases.

She did her own research and decided on some non-conventional treatments which she really does believe have benefited her. This is not a recommendation but she was treated at The Dove Clinic.

I'm not sure if this is any help whatsoever. My thoughts are with you and your family. It's going to be a challenge for the whole family and your mum. I remember the initial shock from the diagnosis and I continue to struggle at times. Hugs.

Report
houseHuntinginmanchester · 04/10/2015 19:16

Thank you Linus. I'll have a look at dove clinic.

Just got back from a weekend at mums.

When I'm there, it can all get a bit much and I miss dh and want to get away from it. When I come home, I can't stop thinking about her , about it, about what will happen and how it will all end.

OP posts:
Report
Chocqueen99 · 04/10/2015 21:51

They usually say cancer treatment private is not as good through Nhs. My nan is in the same boat it's horrible she's had 4 lots of chemo & is stable now.I feel the same as you I live with her & I'm dreading things getting worse.

Report
houseHuntinginmanchester · 04/10/2015 22:34

Choc, do you mean treatment is better through the nhs? How come ?

OP posts:
Report
Chocqueen99 · 05/10/2015 15:14

I don't know that's just what it is supposed to be, especially for cancer treatment NHS is one of the best. Although u din wait a little bit to start it. But apparently most cancers don't grow much within a month

Report
DPotter · 05/10/2015 15:26

This is awful for you and your Mum.
Don't believe the Daily Mail view on cancer care in the NHS - it is good. The doctors who work in the NHS work in the private sector as well (very few work exclusively private). Where about in the country are you ? You can ask for a second opinion through the NHS, you don't have to pay. And as for thinking for paying for treatment privately - well it is incredibly expensive, and I mean expensive - 10s of 1000s, by the time you factor in drugs, radiotherapy, tests scans, consultations, so unless your mum is already insured, it really is a very big financial commitment. If your mum is insured, contact her insurer - many have special arrangements for their customers who have cancer.

Report
SomedayMyPrinceWillCome · 05/10/2015 15:28

Where about in the UK?

Report
PestoSwimissimos · 05/10/2015 15:52

Hi OP, so sorry to hear about your mum Flowers

I think the best thing for you to do would be to accompany your mum to her next appointment with the Consultant. Be prepared with your list of concerns and questions and then you will be better prepared to understand the options available.

When DH was in a similar position we asked about being seen privately, but quite frankly the NHS options were way better, for many reasons, and so we didn't pursue that further.

Good luck Smile

Report
houseHuntinginmanchester · 05/10/2015 16:16

Mums in West Yorkshire, I'm in manchester.
I've obtained her medical records and handed them in to the Christie clinic - I didn't know a second opinion was free on the nhs. Does anyone know how that works?
And I didn't realize it would be that expensive either Sad

OP posts:
Report
houseHuntinginmanchester · 05/10/2015 16:21

They've said chemo will be treatment but not a cure. So I'm assuming it's just to prolong life rather than to cure her completely Sad

Tablets may be an option, they've taken another sample of her biopsy to test compatibility with this type of treatment but have said only 1 in 10 types of lung cancer respond to this type of treatment.

Chemo - she's 74, diabetic. How will she cope on chemo?

Just feels like there's no options at all for dealing with such a huge blow Sad

OP posts:
Report
PestoSwimissimos · 05/10/2015 16:31

Another thing you can do is contact her MacMillan nurse. She will have been allocated one of these when her cancer diagnosis was made. Failing that, please contact MacMillan themselves, as they are very helpful and kind and able to offer sensible advice.

Report
houseHuntinginmanchester · 05/10/2015 18:08

Just had a thought. Can mum get a referral from the hospital where she is to Christies hospital which is close to me, via the nhs ?

OP posts:
Report
DPotter · 05/10/2015 22:09

Like Pesto suggested go with her to the next appointment and ask all the questions you want (write them down and work thru the list).

As for the second opinion or referral to another hospital for family reasons - all you have to do is ask . There are options - get in touch with her Macmillan nurse - she/he will be able to talk you thru the options in more detail. I doubt the Christie will do anything without a direct referral from the consultant - they need to ensure your Mum's home health authority will pick up the bill, whereas if her current consultant refers her, there'll be no problem with funding.

I know its scary, but keep calm and make a plan - and tick off each point and don't sign up for private treatment without getting an estimate from both the doctor and the hospital

Report
annandale · 05/10/2015 22:15

I'm so sorry to hear you and your mum are dealing with this Sad

I'd just be careful looking at private treatment - in the cancer centre where I work, any private patient is on the only ward that takes private patients, which is not the specialist ward with nurses who know the ins and outs of cancer treatment - funny things like that.

Ask to talk to the Clinical Specialist Nurse for the lung cancer team - assuming your mum is happy for you to talk to them. They are the ones who probably will help you most of all.

Also I'm pretty sure there is a Maggie's Centre where you are, and they can be really wonderful.

Report
houseHuntinginmanchester · 05/10/2015 22:25

Thank you for all replies.

Will definitely go with mum to next appointment. Will call Macmillan tomorrow and also look into Maggie's centre.

OP posts:
Report
houseHuntinginmanchester · 05/10/2015 22:26

Annan - where would I find the specialist nurse, is there one in every hospital?

I'm just so terrified of what they'll tell me.

OP posts:
Report
PacificDogwod · 05/10/2015 22:27

I am so sorry you have this worry Thanks

Clearly you want the best care and treatment for your mum and both you and she must be confident in that that is what she is getting.

As others have said, be careful about considering private treatment for cancer. NHS treatment is evidence based and follows internationally agreed protocols. Private treatment can be excellent (but sometimes is not) and often not able to deal with unexpected turns for the worse or complications. Also, continuity of care is a much bigger problem in private treatment for complex problems. That is before you even consider costs which can reach 6 figures.

I am not familiar with facilities in Yorkshire or Manchester, so apologise to not be able to be of any practical help.

By all means get advice from a second authority - but also be prepared to be told the same thing.
Non-curative treatment is not the same as 'we've given up on you'. Think of some cancer treatment (without the expectation of cure) as the management of a chronic disease: diabetics are never 'cured' but can and do live healthy lives with their condition. HIV infection used to be a death sentence, we cannot cure it, but people live for many years with the virus.

Do weigh benefits and risks of treatments against each other and against less aggressive options.

You must both be devastated by the news and very frightened - just take the time to recover from the shock of diagnosis and make considered decisions.

Look at the Cancer Bacup UK website, McMillan and Maire Curie websites and gather as much information as you can. Bear in mind that NOBODY, not even the world's best specialist can predict accurately what is going to happen to your mother. All anybody can do is talk about risks and percentages - there is no way of knowing whether you mother might be among the 80% or the 20% of something quoted.

Wishing you the very best of luck.

Report
PacificDogwod · 05/10/2015 22:31

Oh, and also chemo is not = chemo, there are easier to tolerate regimes and quite grim ones.

Don't let your fear paralyse you or panic you in to ill considered action.

Go along to your mother's appointment with her.

Take a note book with you.
Write down any questions you or she have as they occur to you.
Write down answers.
Don't hesitate to ask questions again, and again if you have to. HCP can be very guilty of taking things for granted just because they deal with them day in and day out, when everything is totally new and terrifying to you.
Ask, ask people to rephrase things, say 'I am sorry, I don't understand'. Keep asking. Be that creaky gate if you have to Thanks

Report
annandale · 05/10/2015 22:33

I hope that the Clinical Nurse Specialist will find you, they should do. You could ask the consultant if there is a clinical nurse specialist for lung cancer when you are there.

Report
houseHuntinginmanchester · 05/10/2015 22:39

Thank you pacific. Your post brought tears to my already swollen eyes. The tears that are ever-ready these days.

I'm just struggling through each day, almost lurching from one essential task to the next, going through the day in a foggy haze. My two dd's watch me closely, the two year old declared this morning that granny wasn't poorly anymore. ' No no no she isn't'. The six year old has barely asked any questions after i had a gentle discussion with her about it, which is unusual for her. But ever since, I have seen bits of paper and card lying around the house.. 'mum and dad, you are the best family'.. 'Mummy, you make my life so happy. If you weren't in my life, it wouldn't be good.'
It's almost as though the child inside my 31 year old body is crying out through my daughters, while my heart remains frozen, paralyzed in a state of shock and fear.

OP posts:
Report
stareatthetvscreen · 05/10/2015 22:46

be very very wary op of these private clinics - they will make claims which may unrealistically raise your hopes.also as a pp said any treatment will cost thousands.
i really think the nhs is by far your best option.lung cancer is a very hard to find cancer which by the time it is detected is often terminal.i lost my brother in law last year at 43.
my own gp has warned me off the dove clinic for my - untreatable - chronic condition.

all the best for your mum xx

Report

Don’t want to miss threads like this?

Weekly

Sign up to our weekly round up and get all the best threads sent straight to your inbox!

Log in to update your newsletter preferences.

You've subscribed!

houseHuntinginmanchester · 05/10/2015 23:33

I just wanted to add, that mum has never smoked in her life. In case anyone was reading the thread and was feeling, I don't know, that it's happened because she must have been a smoker or whatever.
Never smoked. Life is so cruel.

OP posts:
Report
annandale · 06/10/2015 20:54

Life is cruel indeed. I can well believe she's never smoked though it would make no difference at all if she was on 60 a day. Your poor mum and poor you.

Report
ThatsNotMyHouseItIsTooClean · 06/10/2015 21:02

When FIL was diagnosed a year ago with lung cancer, I spoke to a consultant mate who is a lung cancer specialist in a different part of the country & he said that there is no benefit to going private in this scenario. Hundreds of people are diagnosed with lung cancer each day & the NHS has tried & tested systems for treating them & everyone on the specialist wards is very experienced.
Will you mum end up at Jimmy's? That is one of the leading cancer centres in Europe. The medical care which FIL received there was excellent though he seemed to get lost in the system with Macmillan & got no support from them.

Report
Please create an account

To comment on this thread you need to create a Mumsnet account.