Dear Belhel,

Thank you for posting on Cancer Chat.  I am one of the cancer information nurses and our moderators asked us if we might be able to post something useful.

Unfortunately when lung cancer spreads to the brain the outlook can be poor. I realise that this is difficult to believe,  especially because your dad has been so well and fit. It really is his specialist team that can provide the best estimate about this. 

I am not sure if your father’s doctors know he has stopped taking the steroids. I mention this because it is very important to seek medical advice before stopping steroid tablets in case the body needs to adjust to not having them.  Stopping them abruptly can cause the patient to be very unwell.

I do think that it is important now to contact a doctor about your father’s symptoms.  This should be his GP if you cannot speak with hospital based doctor or nurse.  Steroids are an important treatment for cancer that has spread to the brain.  They help improve symptoms by reducing the swelling in the brain caused by the cancer.  They can cause side effects, but I am not aware that any specific brand causes more than another. 

You can read about secondary cancer in the brain here and information about steroid treatment can be found here.

I think your father would benefit from a referral to the community palliative care team.  They may also be known as the Macmillan team.  Your father’s GP or hospital doctor or nurse can refer him to this service.  They know a lot about  treating the symptoms of cancer and provide emotional support.  They can also liaise with the GP and hospital team.  We have more information about this and other types of support that might be helpful to your father, click here to see it. 

It can be difficult to predict how someone will die but having the support of a community palliative care team can help everyone and ensure that your dad is as comfortable as possible.

I hope that this reply is of some use. You would be welcome to give us a call. If you would like to telephone our Freephone number is 0808 800 4040. We are here from Monday to Friday between the hours of 9am to 5pm.

Take care

Caroline

Thanks for your reply.  He had taken the steroids for just two days, so we didn't give them to him on the third day.  The oncologist at brighton hospital agreed we shouldn't given him any that day (Sunday), and suggested starting half the dose the following day, but we were too scared seeing the effect.  I pushed the Macmillan contact to come round on the Monday and we also advised GP of situation on the Monday. GP has chased things up with his own oncology team at local hospital and they have agreed for him not to take them for now. They may reconsider in time, and implied there wasn't really any other treatment.

There is nothing more scary than having your dad desparately screaming for help to get away from his family and accusing them of trying to kidnap him!  I'm very cross the side effects of this steroid listed as 'paranoia', whereas it was so much worse.

The message we got from the hospital was go home and die.  There was no any callousness at all, they were lovely, but again the only information we have been given when asked on how he will die is he may get more sleepy, and may lose mobility and may go into a coma. But that's it. I am sure there must be so many more things that will happen but oncologist, gp, Macmillan nurse and A&E doctor not elaborated further. They keep just saying there is help! 

I do appreciate it will be difficult to predict exactly.

The good thing is that my dad has forgotten the diagnosis. He knows there is something wrong but doesn't know what and thinks he will get better. He is in no pain, is content, and has had a great life with a loving and supportive family. 

Helen x