Secondary Brain Cancer from primary lung cancer

FormerMember
FormerMember
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Hi,

I have found myself writing here because I simply don’t know what else to do. My grandad recurved a diagnosis of Lung Cancer in April and had a lobectomy to remove the cancer within his lung. A mere few months later, we have just recurved the news that it has now spread to his brain, 3 masses which is causing swelling (he has been symptomatic with right sided weakness and confusion) the Dr that he saw said that his life expectancy is months. He is currently on a high dose of steroids to control the pressure.

Yesterday he had a scan which is being sent to a hospital with better understanding and speciality to see if they can offer stereotactic radiotherapy, if not they will be looking at whole head radiotherapy. 

My question is, is there anyone on here that is going through this? My grandad is a very proud person and would never express any pain or emotions surrounding this for fear of upsetting us. What should we expect if he does indeed proceed with the treatment? 

I am worried that he may potentially go through pain and treatment that he may be worth not pursuing because I don’t want his final months to be sat in hospitals and experiencing horrible side effects.  

Thank you for any responses x 

sarah x

  • 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.

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember

    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

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    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

  • FormerMember
    FormerMember in reply to FormerMember

    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 

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.