Experiences with brain metastases

FormerMember
FormerMember
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Hi everyone, I was hoping someone may have a positive experience to help support myself and my family.

My dad was diagnosed with stomach cancer in November last year. He had chemo at the start of the year and responded really well to it. He was scheduled to have surgery to part remove the stomach in April and the signs were positive. However, due to Covid-19 the operation was cancelled and in the interim the cancer has spread to his brain. Initially it was detected on his brain stem and we were advised that it was impossible to remove it all via surgery. However, 3 weeks ago the brain surgery went ahead and the surgeon said he had managed to remove more than he originally thought...so we were positive again. A day after the surgery he had another MRI which showed the cancer had spread to another site in the brain...this was 3 weeks ago. Today we learned that dad will need a CT scan because they suspect the tumour in his stomach has grown again. If this is the case they said they will not offer him radiotherapy to get the brain cancer controlled and he cannot have the stomach surgery until the brain cancer is controlled. In essence they are saying they cannot do any more for him. But I’ve read some of the posts on here and people seem to have been offered radiotherapy as palliative care even when they’ve been very ill...so I just wondered has anyone had a similar experience? Is it worth battling with the hospital? 
thank you for any support x

  • Hi and welcome to the online community

    I'm very sorry to read that your dad has stomach cancer which has spread to his brain. It must be a very worrying time for all the family especially as a recent scan has shown that it's spread to another area of his brain.

    I'm not from this group but noticed that your post hadn't had any replies yet. This could be because no one here has had a similar experience or just that the right person hasn't seen your post yet.

    I wondered if it might be worth your while joining and posting this in the stomach cancer group as well. If this is something you'd like to do just click on the link I've created and then choose 'join this group' on the page that opens. You can then copy and paste your question from here after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'. 

    I'm hoping that when your dad's team have the information from the CT scan they might have another plan for him. You could also ask for a second opinion and the information I've linked you to will tell you how to go about it along with the pros and cons.

    When you have a minute, it would be really useful if you could pop something about your dad's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi, I'm another community champion, who also happens to have had a brain met, but from a  primary kidney cancer. I had cyberknife ( stereotactic radiotherapy ) on it in 2013. There's also gammaknife treatment.

    Both are done as specialist treatments at specialist hospitals. Mine was at Mt Vernon. The local gamma knife hospital is UCLH in central London.

    Once the met was zapped, it remained there as a kind of dead area. I've been on Pazopanib since, to control any other mets and am monitored by regular CT n MRI scans 

    Hope that helps,

    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 latchbrook

    Thank you so much for the advice, that’s really helpful. I will update my profile when I have a chance.

  • FormerMember
    FormerMember in reply to buttercup01

    Thank you Sue, this does help! I read your profile too, that’s a very inspiring story you have. I’m going to share it with my dad and hope it can help him regain his positivity. He has had his steroids increased and over the last few days seems to have perked up a little and has a bit more of an appetite. Still no date for the CT scan. His treatment centre is currently Addenbrooke’s, I think in the last few years they have added a stereotactic radiotherapy facility so perhaps he may be given that option...fingers crossed! 
    thank you x