Life-long non-smoker with Lung cancer and Spine metastasis

[SJR43]

Hello - my dad who has never smoked has just been diagnosed with a 3cm adenocarcinoma in his lung and a spinal tumour. He has just come out of hospital having had spine stabilisation and will start radiotherapy on the spine next week...we are in shock as this started with a bad back - for which he was given painkillers....has anyone had any positive experiences/outcomes with this sort of situation?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear SJR43

So sorry to hear about your Dad and the shock it has been for you all.

Sometimes the first symptom of a spinal tumour is pain and unfortunately some people who have lung cancer have never smoked. How is your Dad's pain since he came out of Hospital?

There is lots of support through Macmillan nurses and Maggies Centres (they are usually based in the Hospital) their website is maggiescentres.org/

Cancer research UK have lots of information available cancerresearchuk.org

This link below will direct you to clinical trials, if you feel this is something your Dad would consider.cancerresearchuk.org/about-...

You will find information on lung cancer on our website roycastle.org

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[JanetteR57]

Sorry to read your dad's news. can totally appreciate the shock you must all feel. I was told in Nov 2010 that I had suspected lung cancer and had to lose half of my left lung in surgery from which they would then diagnose and treat as appropriate. In Jan 2011, I was told it was malignant adenocarcinoma and the tumour removed was 7cm. I am also a lifelong never smoker and have met and corresponded online with many patients who have never smoked. Most public health messages and tv portrayals automatically link lung cancer with smoking (although it contributes to many different cancers) but that misses the point that quite a lot (up to 25% dependent on which studies you read) of people with a LC diagnosis have not smoked at all and that not all smokers will develop LC.

The message needs to change that if you have lungs you can develop LC to reduce the shock when we receive such diagnoses. LC is much more complex than used to be believed and thankfully there have been many developments in the last few years with greater understanding about different mutations within the tumour for which there might be targeted treatments, different biomarkers that might respond to treatments to turn off signalling pathways or using the patients' own immune system to respond. Treatments whether surgery, radiotherapy, chemotherapy and biologicals/immunotherapy have all advanced in LC. I know several patients with the same as your dad who also had spine tumours (treated with radiotherapySABR) recovering from the treatment and continuing with their everyday lives.

Bad back and shoulder pain are now recognised as potential LC symptoms (although they can often be something else) so GPs need to be aware of this as well as the general public that all LC patients don't have coughs that last for weeks, cough up blood or shortness of breath. Good luck to you all. Pop on here when you need, access trusted websites such as cancer research/cancer support/lung cancer charities if you need more information, call the helpline but if possible, resist the temptation of accessing the web to google Lung cancer as there is a lot of out of date information on there which can be quite scary. Thinking of you...

[SJR43 in reply to JanetteR57]

Thank you so much for replying...S

[AdamLaver]

Hi SJR43. I was diagnosed with Lung Cancer in Mar16 with Spine Mets. I am 38yrs old and a life long non smoker, literally never even tried a cigarette. I take a tablet form of Chemo called afatinib (due to the type of mutation which caused the cancer cells to become active). I also had a bone enhancement injection every 4weeks for a year, which repaired the damage caused by the cancer in the spine. Almost 18months in and everything is stable. The side effects to the drug are a daily challenge but it seems to be doing it's job, for now.

[SJR43 in reply to AdamLaver]

Thank you for taking the time to reply Adam. It seems that there are so many more treatment options than I was ever aware of...I do hope that you continue to do well with this...

[Bow-19]

Just wondered if your dad has been tested for mutations e.g. EGFR, ALK? Lots of people who have not smoked or who have smoked lightly have these and having one can determine the course of treatment. Please do check if he has been tested for them. I am ALK positive and a non smoker too.

Wishing you and her dad all the best Xx