This week I had a broncho while in hospital for a clot in each lung. Next day I get a phone call that they found non small cell cancer. I see an oncologist this Thursday. I would like to know what to expect next. I would like to know average survival people manage to get. I was in perfect health until Dec 9, 2023. I have had so many lung test (mri,ct,pet scan, bronchial wash) I was told each time nothing but ground glass & couple nodules. My thyroid totally stopped working as week which I’m on treatment for.This was first test showing cancer diagnosis. I have been put in hospital week at a time every month for pericarditis. Also had water in lung cavity that was pulled out with a needle. So confused why it took so long to find the cancer. Any advise or thoughts deeply appreciated.
Non small cell cancer diagnosis - The Roy Castle Lu...
Non small cell cancer diagnosis
I imagine you're feeling scared, angry and bewildered just now. It's natural. Lung cancer is sometimes found whilst investigating other causes or during treatments for other conditions. The tests you've described that revealed lung nodules (described as ground glass as that's how they look under the microscope) are common - like moles on the skin, very few develop into anything serious but many increase/decrease in size as a result of infection/inflammation. It sounds as if the fluid on the lung (effusion) has been a major issue in recent months hence doing more investigation.
I had similar delays in my diagnosis and misdiagnosed and treated as if uncontrolled asthma for a week in hospital after going to A&E mid October. It took many weeks to get a CT scan due to coughing (couldn't lie still in scanner) then machine breaking down then rearranging appointment. After results, told my 'case would be referred to a MDT' (multi disciplinary team) and they'd be in touch. So my next thing was a PET scan then I saw a consultant (surgeon rather than an oncologist in my case). He told me the large mass in my upper left lung had to be removed with half my left lung then sent away to find out what it was. A few weeks later (2 months + since arriving in A&E) I had the surgery but didn't have a diagnosis until another month later (Jan). I was diagnosed with non small cell lung cancer. (adenocarcinoma) and told my tumour was 7cm. I was told I had a rare type (never smoker) and chemotherapy didn't work so to get on with my life. That was in January 2011. I was working by the February and by end March back at full time work and swimming. I've been active, working and travelling since.
I had a raft of chest infections resulting in hospital stays 2015-2019 and 2023. In all instances, they focus on the most pressing symptoms clinically so in your case that was likely to be draining the fluid on the lung. It is quite common to be detected incidentally i.e. whilst looking foror treating something else.
There is no such thing as average survival as we're all different to start with and many types of lung cancer. Your lung cancer will be 'staged' to find out whetherspread beyond the lung and if so, whether contained in the lymph or elsewhere in the body. All these as well as your own fitness/other conditions can influence which treatment will be offered. Despite our beliefs , there are many treatments for lung cancer based on a number of factors - including specific mutations in the tumour, protein levels on the tumour which may mean newer treatments like immunotherapy or targeted agents may be more appropriate, surgery or ablation (a type of radiotherapy) are often used with curative intent for solitary nodules in lung, spine and brain. Chemotherapy, radiotherapy and others (Immuntherapy/targeted agents) are often used in combination for more advanced cancers . Treatments may vary in agent, dose, timings etc. It's all clinically driven and depends on results from many tests. Get used to waiting for these and results to help the consultant look at what's possible.
I became involved in lung cancer research in 2013 and things have changed beyond recognition since then. Even so, I met survivors who were 10, 15 and 19 years out at the time yet I had no idea this was possible from what I'd read especially on Google. After 10+ years in research I understand the way information is presented better and if it is more than 3-4 years old, I'd tend to disregard it as new treatments are trialled and introduced all the time. I know and work with many who are doing well even with advanced lung cancer and living normal lives
Write down questions for your consultant - including 'if I have questions when I leave here, who can I contact?' They may give you the contact details for a specialist nurse. Record the appointment if you can or take somebody with you as our minds often go blank in the appointment.
Take a deep breath, keep active and eat well (important to be at full strength for treatment). Treatments are harsh to beat the cancer yet side effects can be managed with medications. Good luck
roycastle.org/about-lung-ca...
Thank you so much for the information Janette! I am so overwhelmed & trying to cope with diagnosis. Hoping after couple more days I can pull myself together & start fighting.
your reaction is perfectly natural and understandable. once you've met the consultant and able to start hearing about what the situation is and treatment can be, rather than overthinking and imagining the worst, it will become easier.
Better to focus on the 'what is' rather than making yourself with likely more symptoms if it continues worrying about the 'what if'. I have always busied myself to distract my mind when waiting for results or tests - and know what worrying about things won't make the results or discussion any different but can cause a whole lot more issues through not sleeping properly, not eating properly and worry causing other symptoms like shallow breathing, temperature, heart irregular beating etc etc.
Roy Castle lung cancer Foundation and Macmillan also run nurse led helplines during the week so can answer questions too. good luck.
roycastle.org/about-lung-ca...
Thanks. The unknown makes it worse. I appreciate everything you have said!
Hello Bahan,
So sorry to hear about your cancer diagnosis, this must be a very worrying time for you. I see you have had good advice from JanetteR57. It's really helpful when people share their own experiences. I'd like to echo what she says about the advances in lung cancer over the years. Recent new treatments have been effective and survival rates are better than ever, with many living good quality lives for much longer.
It will be difficult waiting for your Oncology appointment to find out treatment options and the plan, and you will want to be prepared. I see you are from USA, so there may be some differences in treatment options but you are welcome to use our resources. All of our information leaflets can be found here: roycastle.org/help-and-supp...
These information booklets cover topics from diagnosis, various treatments options and advice for living with lung cancer
roycastle.org/app/uploads/2... this booklet gives you an idea of what to expect and P48 gives suggestions on what to ask at your appointment.
You may be interested to look at lung cancer staging in diagram form, from cancer research UK: cancerresearchuk.org/about-...
There is a lung cancer pathway from NICE (The National Institute for Health and Care Excellence), where it is presented as a flow chart and you can look up the type of cancer and see the recommended treatment options. When you click on the link, click on the icon that looks like a mobile phone and this open up to another page with the flow chart: nice.org.uk/guidance/condit....
You might want to contact the American Lung Association for information and support in the US
You may find that after your appointment, there is more you wish to find out, support is available, both here and the US, so feel free to reach out again.
I hope some of this is helpful, but if there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
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