How do you live with terminal lung cancer?

[Newroad]

Hi I have been diagnosed with nsclc with brain mets. Have been on Anfatinib for a year, up until now has been really good, however last scan results showed tumour growth in the brain . Just wondering about others who have had same experiences. How do you cope ?

[Tcam]

My mum in law has nsclc awaiting a scan to see if it's spread we are a step behind you so cannot give advise but just wanted to send my love and positive thoughts to you. Nothing can prepare you for something like this I know. 🦋

[Newroad in reply to Tcam]

Thank you, I am 46 and thought I had many years to go, hopefully with medical help I will xxxxx

[Hidden]

I think I maybe in similar situation Have treatable brain met but a not so treatable heart met although they are looking into that for me .All I can say enjoy what you can whilst you can its not always easy to be positive all the time ,its a big ask so if your having a down day allow it ,and then try to move on for yourself and those around you .Cancer is rubbish random and erratic we can try and change outcomes by treatments and positive thought but sometimes its just annoying .My thoughts are with you ,take care .Diane

[Newroad in reply to Hidden]

Thank you for your message, it helps knowing others are feeling the same xxx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

So sorry to hear about your latest scan results. Have you been given any other treatment options? Every cancer is such an individual thing, emotionally and physically, and hope you have plenty support surrounding you.

If there is any specific support you feel you would like, or wish to discuss anything you can call us on our free nurse led helpline number 0800 358 7200

We hope to have our latest booklet out soon on our website on brain metastases with lots of useful information and links.

We will be thinking of you and wish you all the best

Kind regards

The Roy Castle Support Team

[Hidden]

Hi I am just awaiting an appointment but it is the end of June which seems a long time to me so no doubt I will try and get in before that via lung cancer nurse.Or at least more information .Not happy to wait too long just also feel cancer could be growing whilst waiting .I know I am not the only one in this situation just I am inpatient to get something started.Thanks for your support .

[Sarah-Helen]

I had gamma knife to brain met. Have docs provided any other options?

[miasam]

I know this is 2 months on since you put this up but my husband has had 2 lots off lung cancer 1 in 2015 recurrence in 2016 now we have just found out he has brain mets your case seems pretty simular. Please could you tell me what happens next thanks carol