Hello

[PinkRottie]

hi all I’m a new member here but I’ve had Stage 4 inoperable and incurable Lung Cancer for 26 months despite having never smoked. I’ve been relatively well during this time with just a few annoying side effects of my medication. I’m looking forward to exploring the website and the discussion groups.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Welcome to the forum where you will find support and encouragement. Unfortunately, anyone with lungs can get lung cancer and equally sorry to hear you have lung cancer.

We offer one to one telephone support or online support groups through zoom and you can view and register for these through this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at [e-mail]

We have a range of information booklets which you can download from this link: roycastle.org/help-and-supp... you may be quite knowledgeable already given that you have been living with your cancer for a few years now.

Some people are interested in sharing their experience or being a patient advocate, you can look at ways to get involved through this link: roycastle.org/get-involved/

Throughout the year we will be hosting patient information days across the UK, you can view our current ones in this link: roycastle.org/help-and-supp...

I hope you hear from others in the forum living with lung cancer and if you would like to discuss anything or have a chat you can call the ask the nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, or you can email us at [e-mail]

Kind regards

Ask the nurse support team

The Roy Castle Lung Cancer Foundation

[Boo_Radley]

Hi PinkRottie,

Sorry that you qualify, but welcome to the group. You will find lots of helpful advice here.

[JanetteR57]

Welcome to the group .

I was diagnosed in Jan 2011 and became involved in health research in 2013 (also a never smoker). I had no idea at that point that so many people developed lung cancer as awareness was and still is poor amongst the public and even healthcare professionals less involved with cancer. During that time I've met lung cancer patients of all ages, stages, locations in UK and Europe and several have become friends.

Things have changed so much regarding treatment for stage iv which is the majority diagnosis stage in the UK and some other countries and why lung screening is being introduced in many areas for those most at risk currently a smoking history in a certain age group.

I think the shock of the diagnosis can be huge due to such strong societal messaging that the condition is related to tobacco exposure which it is for many. However in recent years other factors have clearly contributed and there is still much to discover on this front. Anyone with lungs can develop lung cancer and society needs to better understand this to reduce delays to diagnosis that often happen for those who didn't smoke.

I've lost track of the different treatments introduced since my diagnosis as well as changes in the way more traditional treatments are delivered. It's common for patients to be given combinations of treatments for better outcomes now too. More treatments have been introduced in the last 10 years than the previous 30 and far more is invested in LC research .

As you've found, many treatments allow relatively good health and symptom/tumour management but the psychological impact of the treatment/diagnosis and side effects still need coping with. Hope you find answers and can contribute to this much needed forum. Good luck.

[Ekopedals in reply to JanetteR57]

Thank you for your positive post.

I was diagnosed with stage IV EGFR lung cancer in September 2024.

I’m eligible for targeted therapy -Osimertinib -and it’s working since my treatment started in November

What stage were you when first diagnosed in 2011?

[PinkRottie in reply to Ekopedals]

I was stage 4 with 9 brain mets, 1 spinal met and 1 adrenal gland met. Scans now show my primary tumour in my lung and 1 brain met. All the others can no longer be seen on the scans.

[Ekopedals in reply to PinkRottie]

That’s wonderful news. The future is unknown and scary.

Non smoker-made sure I attended all my screening appointments all for cancer

My maternal grandmother died in 1957 with lung cancer -never smoked —the tumour was benign but inoperable back then.

I put my dry cough and getting breathless at work down to asthma as my late mum was diagnosed with bronchial asthma in the early 80’s

She also never smoked but managed to live until she was 96.

Keep well and safe.

[JanetteR57]

So glad you're eligible - these treatments just weren't around when I was diagnosed. Several patients I know have been on osimertinib for some years...

I was tested for EGFR as that was the only mutation for which targeted treatments were available and then only under clinical trials - but I tested negative. Immunotherapy and targeted agents were not around - nor keyhole surgery - EBUS and SABR were in their infancy. Also back then they used to save the optimum treatment until last using chemo/radiotherapy first before moving onto the most effective whereas now wherever possible, that has reversed and many patients have a combination or access to a combination of treatments. Mine was diagnosed at stage 2b - the tumour at 7cm back then classified as T2 but its description and T status changed under 2 reclassifications by the IASLC world body that updates its measures and about to launch its 9th version of those classifications.

The wealth of research and new treatments and many other interventions for pre-habilitation before treatment, rehabilitation after, other treatments for side effects and late effects have all changed the landscape beyond recognition. I've been privileged and humbled to meet patients, researchers and clinicians and policy makers in my years of involvement and know how hard they are working around the globe to improve patient outcomes.

never ever give up....