sarasquares

iTrader: (1)

... or treatment. i am in desperate need of a lung cancer specialist. its not for myself, its my mum.i seem to have hit a brick wall so i would be very grateful if anyone has any suggestions. i dont care if its not in this country

this is a very sensitive subject so please dont muppetise this thread (i know its normally me that does that)

as grim as it may sound i would also like to hear of other peoples experiences with lung cancer , good or bad

thanks

Scooby-Doo

Best wishes, I have been through similar with father and father in law recently and we are not out the woods yet. As for advice they have been at the Royal Marsden but have seen different consultants. One has been private and one on the NHS but to be fair the level of service has not been vastly different except the waiting time on private has been shorter. If you are private go for the Marsden if not you may be stuck with the local authority but you do need to consider bills if you wish to finance this yourself as my Dad is well into six figures as was was not a simple case and there will be bills now for life for onoing medication and checks.

Best wishes and I hope everything turns out good for you and your Mum.

http://www.royalmarsden.nhs.uk/home.asp

2000TLondon

My mother-in-law was treated at Addenbrooks in Cambridge, which I'm told is reputable as a cancer specialist hospital. She was originally only given six months but with treatment got another four or five years.

sarasquares

iTrader: (1)

we have most of the test results back now but the last bit is taking ages. we considered going private for different scans and tests but were advised that the private clinics dont like to communicate with the NHS and vice versa. the waiting is the hardest because lung cancer spreads so fast you imagine that you are going to run out of time, which is prolly the case. Radical Radiotherapy has been mentioned if she is suitable, i dont know anyone who knows about this treatment, it is relatively new, say 5 years and it is only done in Mount Vernans hospital and a few other places.

i also need to find information on people who know about inoperable lung tumours. i'd like to think that there are people out there that have defied the odds and managed to out live all expectations....a tall order i know

mart360

My neigbour had it, they did the usual chemo, and i believe some other stuff, (it was several years ago, so i cant remember what exactly) it gave him another 5-6 years,

if i recall, the uk isnt one of the best when it comes to this particular type of concern,

i believe the USA has the best bods to deal with this

good luck

mart

sarasquares

iTrader: (1)

we have been told without treatment we have 6-9 months. but it could easily become weeks instead. there is spread to the lymph nodes in the chest, i dont know if your mother inlaw had the same prognosis as my mum.

princessyin

My mother had lung cancer which inoperable. The cancer spread to her heart which caused it to fill with water. this all happened within a few weeks of her being diagnosed. The doctors gave her 6 months to live and she began a course of chemo. Unfortunately her lung cancer spread so fast and the doctors prognosis was correct.

My mother was treated on the NHS and yes she considered going private. But all credit to the doctors, nurses, specialists- they did everything they could to help. I hope your doctors are proved wrong and wish your mother well.

sarasquares

iTrader: (1)

thats what i am scared of. the spread is so fast.i have heard that some docs give chemo and radiotherapy together, but i can imagine this makes you feel really unwell and so any quality time is lost.

there is a possibility of a trial drug but only if she is well and inoperable. this will buy some time not a cure

you always think it happens to other people

FlightMan

Can't think of anything constructive that will help, but you and your mum have my best wishes Sara. Good luck.

2000TLondon

TBH, my mother-in-law was diagnosed very late. She had ovarian, stomach and breast cancer, in different severities, related heart and chest problems, and I'm sure maybe one or two other problems i can't recall.

She had several operations and three or four chemo courses, whichever is the maximum. She was very ill but very brave. One thing I think everyone regrets is that, partly because she was so brave and always happy, it's hard to really take in what's happening, and we maybe should have done more / spent more time with her, even though at the time you feel you are spending every spare moment there. Guess that's a natural feeling though.

Hope everything goes as well as it can.........

EDITED TO SAY I assume you have been in touch with MacMillan nurses, who were absolutely amazing to my Mother-In-Law and the family.

sarasquares

iTrader: (1)

thanks mate

2000, i expect we will be in touch with the Macmillan nurses in due course. we are still spinning aroung with the news atm.
your mother inlaw had to go through a lot, that must take been one hell of a journey for you all. i cant imagine how bumpy the road will be for us. i just hope i can do at least one small thing to make a difference for my mum

mart360

My sister did macmillan nursing, i take my hat off to that lot,

i couldnt do it, they are worth there weight in gold

Mart

hedgehog

The other people who are worth talking to are the Hospice, your GP might be able to refer you if you don't have any contacts. I know some people imagine the Hospice as somewhere you go to die but in truth they do fantastic work aimed at increasing quality of life and in providing fine tuning for medication etc. so a great part of their work is directed at keeping people alive. They are also fantastic and very dedicated.

See if you can make contact as they should be able to help if only with information and guidance and the Hospice can provide a useful sort of community support where you meet people in the same boat as yourself.

Good luck no matter what you decide to do, I hope it works out for the best.

little-ginge

Squaresy - I definately get in contact with MacMillan - they are really good - they were a life line when my dad had his oral cancer. They can give you advice, support and also find information and organisations who may be able to help.
Their website also gives stories from patients, family and health professionals.

Also have you looked on the Cancer Research website for info? I've had a quick look and they have a section called CancerHelpUk which gives you loads of information, and explanations etc - including giving radiotherapy and chemo together..

http://www.cancerhelp.org.uk/
http://www.cancerresearchuk.org/
http://www.cancerhelp.org.uk/help/de...?page=5047#adv

http://www.macmillan.org.uk/


http://www.cancerbacup.org.uk/Home


Also, I found this - I don't know how much help it will be....
http://www.lunguk.org/


I'll keep looking - you know my thoughts are with you.
x

little-ginge

Royal Marsden & Weston Park hospital, Sheffield are the 2 hospitals in the UK which have been purpose built as specialist cancer hospitals...

scoobyangel

my dad had a kidney tumour removed (along with his kidney) 10 years ago... all was well until last oct when he became poorly, and a tumour was discovered in his bowel, he was operated on and it was removed, the docs say it was a cell that had escaped from his kidney when it was removed 10yrs ago... anyway, just before Xmas he was given the all clear for bowel cancer, so we were elated...

tuesday before last though we were given the news that the cancer was also in his pancreas, and is inoperable...

dad has chosen to have treatment that will hopefully slow down the growth of the tumour, as at the moment he is in fairly good health all things considered, his treatment starts on the 21st of this month and will make him poorly for a couple of months, but my dad is a real fighter and he is determined to spend as much time with my son, his only grandson as he possibly can before his time is up...

we know it is terminal, and there is no cure, but with treatment hopefull it can be slowed down....

i know lung cancer is a totally different kettle of fish, and i wish you and your family all the best, i know what its like to be given news like this... but dont give up hope, they may be able to stem the growth and spread even if they cant operate... i really hope your mum is well enough to go for treatment, and well enough to enjoy her time with her family...

having lost my uncle (dads brother) in nov due to lung and brain cancer my heart really goes out to you

none of us know how long we have in this world, so treat every day like its special

philc

I'd endorse the recommendation for the Royal Marsden, which has a world-wide reputation for cancer treatment.

the art of treatment is to kill the cancer without killing the patient and as most cancer treatements are highly toxic it can be a close run thing.

Hence it is best to be with a hospital, like the Royal Marsden, who are aware how important it is to closely manage the treatment process to minimise the toxic effect on the patient.

Hope it goes well ....

sarasquares

iTrader: (1)

its been heartbreaking for me reading through all your stories. my mum has read this thread and has found some comfort and it has given her some hope.we will be intouch with the Macmillan nurses and The Royale Marsden hospital today.
we are waiting for a PET scan to look for 'hot-spots' in her bones. her lung has partially collapsed over the last few days which changes thing some what. this is still very new for us and every thing is very frightening. i havnt heard of anyone having 'Radical Radiotherapy on here yet, this may be an option but only has less than a 50% success rate, has anyone had this?
keep your suggestions coming as this is one place that i can come back to without having to trawl he net for bits and pieces, thanks everyon

Leslie

I wish your mum all the best S Squares, my cancer was in a different place and I will soon be starting on the chemo as well. Its a hell of a journey but you just have to stick with it and keep up the positive thinking.

Les

Drunken Bungle Whore

I really feel for you Sarah - my Mum had a brain tumour and recovered but my Dad got bowel cancer and didn't (within 6 months of each other too would you believe!)

I'm not trained or anything, but if you ever feel the need to vent spleen about it all please PM or email me as profile. I really understand what you're going through - the feeling of being a spectator to it all was what really did my head in. I'm a bit of a control freak and this was something I just couldn't fix.

Good luck finding a specialist - and if you can afford to speed things up in any way possible, then do it - it's money well spent. Is radical radiotherapy worth trying? Well to be blunt it depends what the odds are - if it's the only thing likely to work and it has a 50% sucess rate then give it a go.

Also worth remembering that Lance Armstrong was given a less than 5% chance of survival - and he's won the Tour de France several times since then. (Not that I'm suggesting your mum needs to take up cycling!)

Best of luck to you both!

(PS Macmillan Nurses are the tops - get hold of them ASAP!)

dicky ticker

sorry to hear the news. unfortunately i see people in your position every day but as a radiographer i'm not too up to date with all the different treatment regimes. but these days any regimes are quite specific to each individual.

where about in the country is your mum? i'm in liverpool but i can ask if anyone has any contacts. clatterbridge hospital near chester is our local oncology centre which has a good name up here. my hospital runs one of the best lung C clinics in the country which has "instant" access to all the necessary specialists

you should be able to get all the answers from the Macmillan gang who are usually very accesible and i would say essential for all concerned. if not you neeed to push the oncologists or surgeons. unfortunately depending where you live dictates how easy it is to get access to them.

its difficult especially now but keep your chin up. in my experience a positive mental attitude goes a long way in these situations. all my long term patients all have a positive mental attitude.

best wishes

Simon K

Wow, reading all this threads, makes me realise that what I went throught with my father and his cancer, has happened to many others.

My father had cancer in his bladder, that spread to his liver. I watched a once powerful, strong man slowly shrink and die infront of me. Cancer is such an invisible illness, not like a gun shot, or wounding, as the person looks totally normal.

I lost my father to bladder cancer in the liver (huh, how's that happen ? :-) ), and one thing I learnt was that you need to push, ring, bug doctors, nurses and get your mum seen too. My father was private, and although the nurses had better uniforms and the food was better, the level of care was the same. Doctors were just as vague, just as slow to respond.

The cancer in my father's liver was never spotted, regardless of his tummy gorwing in size, and the doctor's saying all was ok. Therefore, I would say to anyone, always get second opinions, always fight your case and even if you have to sit in the waiting room for 9 hrs, just to be seen, do it. As although she's strong now, if cancer gets in the body will soon become weak. And, if weak, Chymo will not be recommended or kill the person, like it did to mine. IF you've ever seen a chymo bag, its bag with skull and crossbones on it, evil looking thing.

Look into primary / secondary cancer, and the types of treatments you can get. primary type has lots of treatments, secondary hasnt, as secondary normally means that a cancer cell has moved around the body, and has grown in a different part. This is why chymo is so important after any cancer removal, as its like bleach and clears the systme out, but your body needs ot be strong as it will be come weak and any bacterial will a killer.

Best of luck my friend, and I wish you and your mum, and everyone else here, the best luck in the world and your loved ones get better soon.

SBK

dynamix

iTrader: (3)

i am at a loss also Sara.

my mum was diagnosed yesterday with Pancreatic cancer and secondary Liver cancer both are described by her doctor as inoperable.

all i am told is that chemo is the only option and months is all she has.

i hate to give up hope so soon and will fight this with her but am lost as to where to go for options too. all the support/cancer websites seem to say palliative treatment is the only option and doctors are vague beyond belief.

i really hope your mum keeps fighting and that you find the answers and support you need sara.

jasey

Speak to and Listen to the MacMillan Nurses. They tell it how it is.

You might not like hearing what they have to say but it will let you know where you stand.

They told me my Brother had 6 months - that was 8 months ago .

But at least we knew what was coming !

wacky.banana

Sara,

YHPM in a minute.

WB

sarasquares

iTrader: (1)

its not till its brought into the open that you realise just how many people are affected by cancer. just last night on the news Dana Reeves (mrs superman) died from lung cancer

DBW the Radical Radiotherapy is less than a 50% success rate, but its all we have atm, so fingers crossed my mum is able to have it

we now know that mum is in the final stages and that the reason her tumour is inoperable is because it is in the centre of the chest wrapped around the blood vessels and arteries. it has collapsed part of a lung cos the airway is constricted by the damn thing. they are able to freeze the tumour and make a whole through the center so she can breathe easier, hopefully next week

DT we live in hertfordshire and the Radiation therapy will be in Mount Vernans Hospital, apparently this is the right place to be for my mums needs. there are only a handfull of hospitals which do this Radical stuff. Harefield Hosp will be doing any surgery my mum needs, these two hospitals are fairly close to each other, so that well be a lot easier.

DYNAMIX we only found out it was terminal a week ago so i can truely feel what you must be feeling right now

chemo isnt an option for us as it is in the nodes in the chest as well. the liver is clear atm but we are still waiting for a PET(bone)scan, this will be the real decider as if its in the bones then radiation is useless and could damage her lungs further, i dont know if you have had this scan yet, but as you are near Addenbrookes i assume your treatment will be local to you as the hospital is a good one for cancer. i hope you can find some information from this thread, i have and hope i will continue to

ive had a couple of bad days and hope to have a few good ones now. everyone is up and down as to be expected, but we were told that if mum is healthy she has a better chance. i bought her immune boosing vitamins and everything else you can possibly think of. i also got her a juicer so she eats her 5 fruit and veg each day. lots of TLC and treats work well as. i bought my mum loads of face masks beauty treatments and stuff like that so she can pamper herself. if my mum feels healthy and loved then that has got to be the best way forward.
i am feeling much more positive but we still have a long way to go

keep it coming

jasey

One thing I would say is to make sure you enjoy as much time with your loved ones as you possibly can.

I have always said that life isn't a rehearsal and having your 43 year old brother die really brings it home !

It's fine to talk about fighting the disease - but you really need to remember to get the most out of any time you have left - unfortunately you really don't know how long that will be.

Jase

sarasquares

iTrader: (1)

i am sorry to say that i lost my younger sister nearly 5 years ago to a brain haemorage(sp) out of the blue, she was only 32 and she had a 13 year old daughter at the time

i am definately not going to waste any time my mum has

i am sorry to hear about your brother

Sbradley

Sarah, my cousin in law is an oncology specialist in Houston, texas. He's apparently a world renowned expert.

But he ain't cheap...

Drop me a line offist if you want and I'll try to get soem contact details for you.

S(imon)

sarasquares

iTrader: (1)

YHPM