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The Roy Castle Lung Cancer Foundation
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Lung cancer Awareness: what are the 3 key issues for you?

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I think lack of awareness regarding workup protocols in primary and secondary care alongside the lack of knowledge and universal access to new evidence based therapies is s major concern.

Also the importance of close monitoring and re assessment including repeat molecular profiling during the course of the disease is paramount.

We need a universal high quality system of care with access to the latest therapies and trials as a given and it should not be necessary for the patient to drive this.

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An inexpensive early warning diagnostic test made available and required by all regardless of risk factors. I’m tired of burying young men and women who haven’t reached the age of 30 and 40. H’ll. We lost one this year who was 19. No one deserves Cancer. Smoker or non.

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Surely the NHS would save money and peoples lives by screening and early diagnosis, personally I get so angry when you tell people you have lung cancer and they reply with 'do you smoke'

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My comments are retrospective as I had my cancer treatment in 2000. However I believe the points I voted for are still relative today.

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As lung cancer is hitting those of us who have never smoked and young people who appear fit and healthy who seem to be non-smokers and even if they did smoke would be assumed to be too young for lung cancer. I don’t blame smokers for lung cancer as COPD seems to be common for a lot of people with lung malfunctions. They usually are older and get breathing problems and many live long enough to reach old age. My Mum died of COPD and was 78 my Dad died of lung cancer and was 55 both were smokers. Dad also worked with asbestos. I think a National screening programme would be worth while. However would the NHS allow that due to costs. Awareness Month is good, however it seems to get the worst response as people want to blame smokers which is not right. Moder living from the food chain to diesel and chemicals etc contributes to various cancers as well as our own immune systems. What do any of us do to get Cancer? I know that I have an inflammatory body, as do many people. A modern phrase is “Cancer loves an inflammatory body” are we born that way? Or is it because of our way of life? Who knows? Let’s deal with it anyway we can and carry on living and try to make changes.

Any suggestions about awareness will be welcome. As I am wanting to volunteer and was going to ask my next check up next month.

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For me it’s the stigma arising from the smoking correlation. It leads to a lack of public sympathy and being seen as responsible for a self inflicted disease whether you are a smoker or not. Personally, I last smoked in 1983. Diagnosed with stage 4 NSCLC in 2016. Still feeling good!

I might also add that the historical statistical basis of lung cancer being a male condition, and not a female condition has always meant that lung cancer has never received the public sympathy and public funding of breast cancer, for example, despite being a much bigger killer. Now that lung cancer is affecting more women, there is more marketing for funding and public support. I note that even this survey is female led, just like the Roy Castle Charity. Of course I recognise that this may be a contentious view, but as a GP friend once told me “ When it comes to most conditions, including cancers, women present, men die”.

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Hi Lorraine

Have voted but think lack of knowledge / awareness could be related to GPs. Not sure that they think of lung cancer if you are younger and don’t smoke etc so would be good to raise the profile at this first port of call and get them to send for X-rays if any doubt. I have had good experience with my docs but think I was lucky!

Hope all well with you

Jx

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Hi Janey_H,

The need is to take away the emotion and personal feelings of the process. Symptoms fitting a well described pattern should be referred on an agreed evidence based pathway. The process should be identical for everyone who fulfills the criteria. In the case of suspected lung pathology : Rapid access for X-ray and low dose spiral CT chest.

Nothing else will do.

No delay.

No antibiotics wait and see.

No antibiotics then re X-ray etc etc.

Sounds like your GP knows their stuff thankfully for you.

Thank them please, the thanks will make them even better physicians.

R

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I am a GP and my beautiful wife is carrying around S 4 NSCLC. The usual very fit, healthy non smoking type of person over represented in this community.

Unfortunately the process of lack of education and long standing myths and legends regarding lung cancer in particular, but also in many other conditions, hinders early diagnosis. Time constraints during consultations and patients presenting late, often because they do not realise their symptoms suggest underlying pathology, lack of access and all the other Primary Care pressures are not conducive to gold standard care.

There will always be the exceptional physician but he or she is the one who makes extra sacrifices to ensure best practice often at great cost to their enjoyment of family life and extreme stress.

A system needs to be developed ( algorithms and ‘ flight check’ cards are a start as I believe AI will be the way forward in Primar Care) to:

1. Give the public accurate information.

2. Primary care accurate guidelines that are achievable and funded.

3. The absolute right to gold standard care including evidence based assessment, imaging and treatment timelines as a given with NO requirement to be driven by

The patient or GP. Once the process begins with urgent widespread and accessible low dose spiral CT without any

delay or hinderence from Imaging facilities who often have varied and non evidence based protocols it should be rapid, effective and seamless.

4. Absolute universal access to specialist oncology units ( the future) that again deliver gold standard molecular testing involved in international trials and have close relationships with pharma to enable access to Best Bet therapies ( as is happening driven by patients in the US with a ripple effect being felt thankfully in the UK now).

5. Further development of interest groups such as this with increasing interaction and involvement at committee level educating and participating in the delivery of education to both Primary, Secondary care and the public whilst also being involved at all stages of further research being seen as an essential source of experience, knowledge, drive and funding.

Cancer in the next 10 years I am completely convinced will be a chronic disease process controlled or even eliminated in the next 8-10 years in 80% of cases. Earlier diagnosis, improved therapies and the utilisation of AI will transform the problem and process.

It has already begun as you can see.

So I hope on many fronts that we all survive to see this era.

I for one have and am so sensitised by what has happened to my wonderful beautiful wife that I am determined to be part of this process and will drive it until I die.

Thinking of you all.

Here for you all.

Cancer you time is up.

R

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I agree with the comments about “stigma” but you learn to deal with that side of it. Getting your GP to correctly access your symptoms and refering you on for further investigation is often the problem. Patients need to be pressing home to their doctors how many times you have presented with symptoms and urge them to send you for further investigation. Fear and fatalism plays a huge part on patients presenting early. I would welcome a national screening program.

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We all have different experiences I guess. I must have been lucky as I have no issue at all with the GP diagnosis process. In fact my GP sent me for x-ray 6 times over two years with the classic persistent cough. An eagle eyed radiographer spotted a tumour in lower left lung lobe tucked in behind the heart and invisible to the previous x rays. Even the Oncology and Thoracic Consultants both admitted tat they couldn’t see it!

My subsequent treatment has a been both NHS and privately funded and both are attentive and excellent. (Private funding gets you a saucer with your tea!).

The “stigma” issue does affect the public appetite for funding the charities and therefore research. Just look at these US numbers for NCI funding of cancer research on a per death basis.

Cancer (Deaths)N.C.I. Funding per Death

Lung (162,460)$1,630

Colon (55,170)$4,566

Breast (41,430)$13,452

Pancreas (32,300 )$2,297

Prostate (27,350)$11,298

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Greater awareness amongst general population that anyone can develop lung cancer - I know, I know, the average patient is over 70, has smoked for over 40 years or so I keep hearing at lung cancer conferences but these are not the patients I've met, nor my own situation nor the many we've lost. What can we do to get onto the radar for all so a) it does not come as such a shock to the patient and their loved ones but also so that more people get checked out irrespective of whether at GP, walk-in centre or consultant. We need to fast track suspected cases given the abject failure of Trusts to deliver care within 62 days and press for Trusts to ensure that the cancers where survival rates are poorer (including lung, pancreatic etc) to prioritise these over 'less urgent' cancers wherever possible and resources are tight. I am alive today for the sake of chest x-ray and me taking myself off to emergency department/A&E although the subsequent treatment/diagnosis was subject to horrendous delays, thankfully I'm able to advocate to change the situation for others - others are less fortunate. We need to reduce the barriers between secondary and primary care but also involve community pharmacies and community groups to highlight the possibility of lung cancer to their members to get themselves checked out.

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Early detection and the stigma about smokers are 2 of my priorities.

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