My dad has stage 4 lung cancer with brain metastases

FormerMember
FormerMember
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Hi

My Dad was fairly recently diagnosed with stage 4 lung cancer.  He has a large tumour in his right lung and this has metastasised to his media stinum and peritoneum.  We just found out yesterday that he also has cancer in his brain.  Prior to having the CT scan of his head on Tuesday of this week, were told he was eligible for immunotherapy and that this wouldn't change no matter what the head CT showed as he was already stage 4. 

He has been on steroids for a couple of weeks, 1 week at 4mg then 1 week at 2mg.  He finished these around Wednesday morning.  Thursday and Friday we saw a marked deterioration in him and I spoke to the oncology nurse yesterday.  He has now been given more steroids at a higher dose (8mg).  She says this may affect his treatment so we are waiting to speak to the oncologist on Tuesday.

I have been reading a lot about his type of cancer and the metastases and have been alarmed by the poor prognosis for brain mets but then reading other articles have felt more hopeful as the newer treatments do seem to give more favourable prognosis if successful.  At the moment though I am worried if he will be fit enough to start treatment, as this doesn't start until a week on Thursday. 

I have also been reading about stereotactic radiotherapy treatment for brain mets.

I guess I'm just hoping to talk to people in similar situations as you only learn so much from reading articles etc and I would like to hear other people's experiences.  I'm trying to stay very positive and strong but it's not always easy.

Sorry for the long post.

Andrea

  • Hi , I too had a brain tumour in 2013, met from kidney cancer.

    I had stereotactic radiotherapy ( cyberknife), 3 x 20 min sessions over 3 days. The treatment well  n truly zapped it n it's now monitored by regular MRI scans. I have also been on meds since then,tho had a treatment break 2016 to 2019.

    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

    Sorry about your Dad diagnosis,  I know it's harder for family than patient x

    I had a large lung tumour removed and chemotherapy end of 2019 with no sign of spread, May Bank Holiday I went to A&E with what was thought to be a TIA. Scan revealed the cancer was in my brain (over 20 mets) I had to stay 10 days and I was put on 8mg steroids and epileptic tablets - other than the steroid side effects I have been fine, the prognosis (not suitable for surgery or sterotactic) wasn't the best but I've had 10 day radiotherapy and now weaning off steroids. Consultant has said I can have immunotherapy possibly for 2 years +.

    I was told I had months now possibly years Fingers crossedthere's always hope xxx

    Stay strong xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    Thank you for your response. I am sorry you have had to go through all of this yourself, I can't even begin to imagine what it must be like having the cancer.  I am pleased that your treatments have been helping you and that your life expectancy has greatly increased.

    I keep reading so much stuff and sometimes it brings me right down and I think there's little hope then I read something else and feel more positive.  I think once we've spoken to the oncologist on Tuesday (once she has seen the results of the head CT) then hopefully we will have a better idea of my Dad's situation.  Although they said that his head CT would not effect his treatment plan (which is immunotherapy) I still get panicked thinking they might just turn around and say that it's untreatable.

    Do you mind if I ask why you weren't suitable for stereotactic radiotherapy as I'm kind of hoping Dad would be eligible for it.

    Best wishes xxx

  • FormerMember
    FormerMember in reply to buttercup01

    Hi

    Thank you for your response and I am pleased to hear you seem to be doing better now.  I think when you're new to the world of cancer everything is so alien and there is so much to read up on.  I'm hoping Dad is suitable for the stereotactic radiotherapy but won't know until we speak to the consultant on Tuesday.  He is booked in for immunotherapy but this was booked before they had the head CT scan results.  They did say at the time that the results of this scan would make no difference to treatment but I worry they might say the cancer is too far gone that it can't be treated.

    I hope you keep on getting positive results.

    Best wishes x

  • Hi , I presume when you say you're reading things, that they're from the internet?

    Beware of Dr  Google!! Often things on there  are years out of date in term of treatment options and prognoses.

    Good luck for tomorrow,

    Sue

    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

    Hi Sue

    Yes I am using the internet but mostly looking at sites I was advised to look at by the oncology nurse so the Macmillan site and the Lung Foundation.  I am using also a variety of other sources but am weighing up the information they provide and not just accepting everything I read.  I'm tending to stick to more factual accounts than experiences on other sites. 

    Thank you though for your response.

    Take care x

  • Hi , glad to hear you've got some reliable sites to look at. I hope your dad can have  stereotactic radiotherapy.

    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 FormerMember

    Hi 

    Not what you expect at 50 but I'm very positive x

    Sorry I don't, possibly because I've got so many! It had to be whole brain radiotherapy

    Good luck on Tuesday x

    Take care x

  • Hi , has had whole brain radiotherapy.

    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

    Thanks Buttercup

    Poor Varmint has come across me a few times in the lung group and likely has been bored with my story on a number of occasions Slight smile

    Yes if you have multiple brain mets they have to treat them with full brain radiotherapy as Stereotactic is very precise treatment to one area of the brain at at time. It also depends on the size and location of the tumour whether you could have Stereotactic radiotherapy or not. I think about 2cm maybe a little more is their maximum size.

    If it's spread to the lining of the brain too, means you have to have full brain radiotherapy instead. Full brain is good for doing multiple areas of the brain in a few treatments (usually 5 - 10 Max).

    If you do want further information and I can answer, you are welcome to ask Varmint.

    In another few days I can tick off stereotactic radiotherapy to my ever growing treatment catalogue of experiences.

    It does make me wonder how many have had (since being diagnosed with brain mets) 2 x craniotomies, full brain radiotherapy, chemotherapy, immunotherapy and then stereotactic radiotherapy. I was going to ask, but doubt I would find anyone.

    Good luck Varmint