Comparing other countries treatment.

[Workaddict58]

Hi everyone, my mum has been recently diagnosed with Stage 4 NON SMALL CELL LUNG CANCER ADENOCARSINOMA confined to both lungs with one enlarged lymph node on the chest.

She’s 61 and was never a smoker.

Just wondering anyone with the similar diagnosis out here is able to help us.

We would like to know what treatment they’ve been given around the world such as Asia, Europe and America to treat it.

We have been tested negative for all the mutations so targeted therapy is out of the question.

We are based in the United Kingdom.

Thanks in advance xx

[JanetteR57]

I was diagnosed with adenocarcinoma and had half my left lobe lung removed (and a 7cm tumour) in Dec 2010 when I was 52 so am now 60 and never smoker. In the last 5 years or so I have become involved in lung cancer research and attend several conferences a year (including overseas) with various organisations and am part of the British Thoracic Oncology Group, European Lung Foundation (part of European Respiratory society), CRUK stratified medicine programme board, Roy Castle lung cancer foundation patient advocate, Society of Cardiothoracic society and others. The UK offers the same treatments although in some countries surgery differs as they take pieces out of the lung rather than the whole lobe as a result of earlier detection but often this means it recurs whereas removing the whole lobe is 'the gold standard'. All our treatments in the UK follow NICE guidelines, British Thoracic Society standards and in some areas we are world renowned for our access to clinical trials (the lung Matrix is the largest stratified medicine programme in the world). The main differences between the UK and elsewhere is that sadly in the UK our cases are detected much later than elsewhere (for a variety of reasons) so not that many are eligible for surgery compared to other countries. However in terms of new breakthroughs and treatments, having attended an ESMO conference in autumn 2017 I heard a breaking study reporting a marked difference with a particular agent (duvurlumab) that this was quickly brought into practice in the UK as with other countries. Many UK clinicians are members of international groups, committees and groups of their peers so knowledge and experience is shared internationally to try and beat this disease. Many clinicians have practised in other countries and attend training in other countries. There are many different treatments and different combinations of treatments and we have some excellent clinicians and centres in the UK so do hope this reassures you. Some reasons for late detection/diagnosis in the UK are thought to be a) UK and Denmark were worse than other countries and both use GPs as gatekeepers to the specialist/consultancy and diagnostic services, b) the UK uses chest x-rays as its first detection tool whereas almost everywhere else uses CT (we go onto use CT if chest x-ray or other symptoms suggest but our scanners are higher dose and radiation can itself trigger cancer) c) stigma in the UK around the condition d) people not wanting to bother the doctor with 'minor symptoms' and e) fear (universal - not exclusive to the UK). Personally I believe the GP issue adds delays into the system especially with never smokers and younger patients as we are often misdiagnosed with other conditions rather than checking for lung cancer. I did not test positive for the agents around at the time for EGFR (the only test then) but I was back at work in 3 months and swimming and continue to work, travel and swim. It is not the 'death sentence' that people may make out or the internet may show you as much of the information is outdated. Work with her clinical team to understand what the options are once pathology has confirmed the exact nature of the tumours - SABR has proved as effective as surgery in many cases for those unable to have surgery, radiation and chemotherapy combinations are also effective and immunotherapy is now working as a first line treatment for many. The fact it is contained in the lungs is a good thing - and hopefully they can get her onto a treatment plan before too long. There is some good information on Roy Castle lung cancer foundation website that may explain some of the options but if you/she has access to a consultant or a lung cancer nurse specialist, I'm sure they can help. I've met people who are living on newer treatments and have done so for years and survivors of 20+ years who did not have surgery. I had no idea that could happen. Good luck.

[ElmerFudd314]

I am in the northern USA, Minnesota, being treated by the veterans administration. Diagnosed December 2017 with nsclc with Mets to the head. Non smoker. Had a small tumor in upper left lung. Started with 5 days of radiation to head with some targeting. Then it was chemo with pemetrexed and carboplatin every 3 weeks for 6 cycles. Seemed to work so went on maintenance chemo with just pemetrexed every 3 to 4 weeks. Early 2019 was switched to opdivo due to Mets to spine, ( every 4 weeks.) radiation to spine recently and a rib. No results so far except i’m still kicking. Good luck to you!

[Ncpoet]

I am in the U.S. I was diagnosed with stage 4 NSC adenocarcinoma in 2013, only because I had fallen and needed a chest X-Ray. I was a non-smoker, but a good portion of my life was spent around people who did smoke. No radiation or surgery. Did chemo. Tried two targeted drugs which I had to stop taking due to heart rhythm problems. I have had no evidence of disease since 2016. My oncologist now declares me cancer-free but I still do scans as a precaution. So I am a 6 year survivor. Enter this arena with hope. Faith was the major help in my healing. I believed I would be fine even when tests said otherwise.

Wishing you all the best,

Judy

[Workaddict58 in reply to Ncpoet]

Thank you for your reply, gives us hope xx

[Rebeccah8]

I had the same diagnosis as your Mum. Did not have chemo or radiation but currently taking Tarceva which is working since I do not have the pain I experienced before Tarceva.

Just trust God 'cause, with God all things are possible. Keep a positive attitude and believe.