What audit data would you like to see... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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What audit data would you like to see on lung cancer? Choose your top 5 priorities please, add any comments or recommendations.

LorraineD profile imageLorraineDAdministrator70 Voters

Please select all that apply:

20 Replies

I would LOVE to know that they’re working on finding treatments for the long term side effects of immunotherapy

LorraineD profile image
LorraineDAdministrator in reply to ynkefan08753

thanks for your feedback ynkefan08753

The audit will take into account immunotherapy and treatment impact. Researching side effects would be done separately. We would be interested in hearing more about your experiences and concerns, if you would like to private message me.

best wishes

Lorraine

Immunotherapy has drastic affects on bone. Density is much reduced I think everyone should consider asking for a bone scan after treatment. Have had a bone issue for years which had considerably improved now after 2 years treatment am back to square 1 and have to do extra exercises, supplements, you name it I do it.

More definately needs to be done in research 're lung cancers. I lost my mum to Neuroendocrine cancer last August after a 10 month battle. Primary cancer 1cm was found in her lung and then 4cm in her liver. The treatment of chemotherapy and side affects I feel were so much worse than the cancer.

More targeted treatments like proton B, stem cell needs to be researched more.

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LorraineDAdministrator in reply to Hopes77

Hello Hopes77

I am sorry to hear about losing your mum. The audit is designed to report and monitor current treatment rather than research into new areas. There is a lot of work going on at present both to improve side effects from treatment and identify news ways of delivering treatment that reduce side effects.

best wishes

Lorraine

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I would like to see quite a few things LIKE Alzheimer’s asbestos cancer rates being recorded.

Just becouse unfit for treatment don’t mean nhs digital should forget about them

After all where there occupational comp go.

Other would be to see cancer hospitals disclose make public how many tumours contained asbestos bodies.

It’s not like the don’t check ITs just kept secret from public.

Cancer treatment and research in U.K. is a farse at best verging on criminal BUT as long as the have tissue sample who really cares

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LorraineDAdministrator in reply to Hidden

thanks for your feedback Jeff,

best wishes

Lorraine

There should be more funding for all the Charity that is involved in helping people with all types of Cancer. Lung Cancer is the one that you hear less about and should be screened for more.

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LorraineDAdministrator in reply to Babydolltina

Thanks Babydolltina

This is a priority for our charity and something we are working on. There are new Lung Health Checks being rolled out in 10 areas across England this year.

best wishes

Lorraine

I would like to see 1 yr and 5 yr survival rates for each stage and the subsequent types of treatment eg Stage 4 and targetted

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LorraineDAdministrator in reply to Pepper20

Thanks Pepper

We can feed that recommendation into the discussion.

best wishes

Lorraine

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Clear information regarding the effectiveness of immunotherapy and targeted therapy would be useful for later stage lung cancer in order to make choices and better understanding of how it works .

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LorraineDAdministrator in reply to Hidden

thanks Diane,

A relevant issue to feed in.

best wishes

Lorraine

I'd like to see smoking status and age recorded - it seems there is growing incidence of younger patients diagnosed and never smokers. This is an area neglected in lung cancer research as if we're just 'outliers', 'anomolies', 'rare cases' yet in the USA lung registry research and areas such as Asia, this is recognised at least. To me this is much important than some of the information currently gathered.

Cancer in non-smoking patients is increasing at an alarming rate internationally. I do not believe that smoking per se causes lung cancer but if your body's own DNA and cells are structured in such a way you are more likely to suffer from this most horrible disease, AND you smoke, or frequently directly exposed to passive smoking, then you have unquestionably increased your risk. Think of it along the lines of allergies - pollen is a good one. Hay fever sufferers cannot tolerate pollen because their immune system reacts, yet 5 of their friends sat in the same garden with the same plants will have no effect at all because their body tolerates it. As far as I concerned, this is the only logical reason why a group of say 100 soldiers from WWI all having free cigarettes and smoking the same numerous cigarettes every day, and continue as lifetime smokers, yet only about half of them go on to develop lung or other cancers related to smoking. Young people may not smoke proportionately as much as my generation, but given the other suggested causes such as Radon and exhaust fumes, it is likely in this modern age, as younger age groups are more likely to be walking or cycling, or attached to their mobile phones, this could in time prove to be a big contributory factor or even cause.

I belong to a fb group ’keytruda and I’, mainly USA people - there are many many positive stories with people still here and NED 3/4/5 years. There doesn’t seem to be any standard protocol over there and obviously been using longer and most people have to pa via insurance. Some patients stop after two years and still stable/NED years later other oncologists keep them on beyond 2 yrs. I find it very useful group - sad stories too with the worse side effects being experienced, but it is heartening, especially as I am terminal, to read of the progress many many patients are making and keeping up with news on new drugs.

This site is probably the most honest and informative one I have been on. I also find it shocking that compared to the USA and Canada, and even Australia, the experts in the UK (and by that I mean governmental, surgical, nursing and GPs), appear to provide only bog standard information on lung cancer. Other countries aforementioned, are more than happy to put out videos, up to date diagnostics, symptoms and treatments, not to mention they all appear so open to reveal their waiting times, reasons for this, and more importantly personal and hospital success/failure figures. These facts are easy to locate and read. I have laboured hard and long to find any such information in the UK and I consider it appalling that those that have power over those of us with the "alien" inside them, are unable to easily access this extremely important information.

Interesting comments - the UK publishes a lot of data but it's not obvious in search engines. Too many research studies develop their own websites for their research instead of it all being pooled in a central depositary. The National Lung Cancer Audit (NLCA) for the UK is well respected around the world for its completeness linking hospital episode statistics, with national cancer registry, systemic anti cancer therapies, surgeries, pathologies and coroners' information. There is a separate patient booklet on this published for the last 2 years (I wrote the foreward last year as a patient advocate). There is good information available on all Trusts published by the Society of cardiothoracic surgeons (SCTS) and audits on lung cancer advising outcomes etc for areas (by CCGs and other areas). One issue is the time it takes for the information to come out but it is used widely. there is also the ACE project to accelerate earlier detection of several cancers - lung included - worked on by Macmillan, CRUK and NHS which is published. Unfortunately people need to know what they're called to search for them - academia, research bodies and the NHS have a long way to go to understand how to optimise information for public accessibility. I am involved with clinical commissioning and every Trust and CCG is monitored on its cancer waiting times, times to treatment, waiting times and other statistics and these figures are published within public board papers on websites every month. The point is most people don't know about how healthcare is commissioned so this information needs to be much more transparent. The information compiled by Roy Castle on its website on treatments, living with lung cancer, travelling with lung cancer etc are pulled together by clinicians and reviewed by a patient panel and regularly updated. The difficulty is to ensure that the most accurate and trustworthy data and information is at the top of search profiles - it's too easy to get sucked into inaccurate and outdated data using search engines. Your description of the 'alien' within made me smile - our own cells turning rogue that trigger cancer is one reason it's so hard to find treatments - if it was truly alien, our own systems would recognise this and react against it. I've been intrigued since becoming involved in cancer research at the sheer number of types of cancers (over 200) and in lung cancer, so many more than was believed even a few years ago so with global collaboration, treatments are coming into practice all the time.

Wow! Thank you so much for your reply. The points and references you have made above clearly support what I have said, in that there is no obvious, transparent "go to" place(s) for cancer patients under the NHS in the UK. Given we are in the 21st century, and given that to a huge degree we are still sadly living in a postcode lottery so far as health is concerned, in the UK, I believe it is about time this was changed and even perhaps, local NHS authorities voluntarily published this information in a clear and concise manner to enable patients to make informed decisions and strengthen their power of self-advocacy going forward.

I am both lucky in some ways and unfortunate in others. I have spent many years handling personal injury and clinical negligence claims both from an insurance and litigation prospective, relating to cancers and causative diseases. The unfortunate part was I had diagnosed myself prior to completion of all diagnostics and I was right, down to the specific type. I am not a medical expert in any way, but I have enough knowledge to put two and two together. It's been tough because basically it has meant I have not had the opportunity to hope it was all going to be negative and because of it depresses me and makes me anxious whilst I wait for treatment.

I am aware of the outcomes of patients with the exact characteristics of my cancer being at a point of curable, to move to stage IV simply due to the delay in treatment being provided. In a world where cancer research, treatments and outcomes have improved so dramatically in even just the last 5 years, and in a country where we all hold our NHS precious and boast of it standing out from the crowd of health treatment worldwide, no patient should be in that position. It's inexcusable.

There appears to be no scale of priority within NHS authorities to commence urgent treatment on cancer patients based not only on the fact they have diagnosed cancer, and endeavouring to maintain the 62 day time limit for commencement of treatment, but also the specific characteristics of a patient's cancer and likelihood of spread/speed and metastasis, location of tumors etc. It would appear that waiting lists, operations and treatments are simply down to a "one size fits all" and "first come first serve" basis with those lists being issued and ran by non medical managers and administrators. Our surgeons, doctors may do a job and we are all generally extremely appreciative of their efforts, but once their recommendations are made, the control of speed and delegation of those recommendations i not theirs. This is one leading reason for an ongoing increase in clinical negligence claims for failure to diagnose and/or treat cancer in good time so as to preserve the cure factor and successful treatments in patients. How can it be acceptable that a patient is diagnosed and operative treatment with curative intent is agreed, yet an unacceptable delay in that treatment has resulted in progression to a later stage hence removing the curative prognosis.

It is crucial therefore that open, easily accessible, frank and honest information is provided to the public to enable all cancer patients to be their own advocates and fight their own corner. If it is evident a patient's own local health trust is performing badly, they at least then have the opportunity to seek treatment outside their local area.

Happy I made you smile on my reference to the "Alien" - by this I simply mean it's "something that is not supposed to be inside me, and I don't want inside me", hence it's "alien to me and I want rid". Not a Sigourney Weaver moment :-) lol

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