Secondary Brain Cancer from primary lung cancer

Hello xo_sarah,

I had stereotactic radiotheraphy in 2013, for a brain met from my kidney cancer. 

Ginajsy has had this and  -more recently -whole brain radiation for brain mets from her lung cancer.

I will pm her as I can't do links on my phone.

Hi Sarah

I am sorry to read about your Grandad. I hope he has some set choices on offer. 

I did not have the stereotactic radiotherapy but I did have the full brain radiotherapy. Mine was also from an original primary lung cancer and I was on steroids too.

The side effects of the full brain radiotherapy vary for each person.

As I had some lesions I found that the radiotherapy caused swelling around these made it initially worse. So your grandfather may fine his weaknesses worse and his confusion. I was advised that this would last a week or so. For me my symptoms got worse the day I started it and it went on too a week to 2 weeks after finishing.

The standard affects too will be some slight burning of the skin and he will loose his hair.

Tiredness I was told would peek at week 4 and gradually go and this did make me extremely tired. I found very basic things exhausting and wanted to lie down a lot. It is getting better so that is something.

I hope this helps a little and someone can give their count of stereotactic radiotherapy.

Hi Sarah, my stereotactic radiotherapy was cyberknife. It was done as 3 x 20 min sessions over 3 consecutive days.  I stayed in accommodation at the hospital for that time.

There was no pain or discomfort from it at all. I was put on 2mg of steroids / day to combat the swelling. I still take 0.5mg/day, but that's because  my primary is kidney cancer n I don't produce enough steroids myself.

Hope that helps. Feel free to ask more questions n I'll c what I can do x

Thank you for both your responses.

please don’t feel obliged to respond, but have either of you been given life expectancy? I am under the impression once it has spread to be the brain it is more so about prolonging life opposed to a cure.

Its probably me grieving and being in denial but I just want to know if there’s any hope at the end of this very dark tunnel. I feel guilty that I’m feeling depressed when I’m not the one going through this personally. I need to know if we should remain hopeful or whether we should be having discussions about end of life care and his wishes.

You are both incredible going through such a tough and mean situation and I can only imagine what you and many others must go through.

lots of love and hugs

sarah

x

Sorry i should have added I had 5 sessions. It's usually 5 -10 for full brain.

Sorry, I am sorry to say once the primary cancer has spread to a different part of the body it makes us incurable and we are on palliative care.

I haven't asked my life expectancy, I did not want to know and it's a best guess based on the individual, how they respond to treatment.

Mines quite aggressive and when they mentioned the long term side of full brain I got the impression I would not be here to get them.

I had a life insurance policy which i asked to claim. They consider 6 - 12 months life expetancy to be terminal and pay. I got my pay put. It's been about 2 months since I had the full brain.

I do think you need to do the talks you have mentioned and say all the things you need to each other.

Hi xo-sarah, mine's never been about life expectancy.

My treatment was aimed at zapping the tumour for good. I had an MRI in June this year n the original tumour is still there, tho much reduced and inactive.

Luckily for me,kidney cancer is a slow grower.

I'm not intending on giving up any time soon!

Btw, sorry to mislead u re Gina having stereotactic radiotherapy as well. Sorry to Gina too re