Devastated family.Can anyone offer positive help?

FormerMember
FormerMember
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My husband had 40%of his lung removed in December due to lung cancer & was doing brilliantly until he fell last Tuesday & was taken to hospital where they gave us the devastating news that the cancer had spread to his brain. Our family are in pieces trying to come to terms with this. I feel very angry & bitter towards the oncology department as our GP had raised her concerns with them in February as his voice had gone weak & husky. Despite seeing the oncologist after she’d raised this & the 3 monthly scan showing minimal changes in the lymph nodes by the bronchial tube they didn’t do a head MRI. Our GP also raised her concerns with oncology  a month ago as my husband had begun to stumble...they said they’d add a head CT to his next 3 monthly CT (which was due this week). However the CT department told us they’d put him on the waiting list as scans weren’t being booked. 

I appreciate that everything has been thrown into chaos with Covid 19 but the advice has always been that if you have worries speak to your GP. We feel monumentally let down. My husband has been discharged & is taking steroids & anti seizure medication, apparently the oncology &MDT are having a meeting to discuss a treatment plan but we’re in the dark. 

Please please can anyone offer any positive advice on any treatments they’ve had which bought more time? My husband is only 67 & we can’t just give up on him yet. He’s my rock & our sons world. I’m so very sad, bitter & desperate.

  • People are surviving a lot longer with Brain mets and there are lots of treatments  available. Its a terrible shock when it goes to the brain and can be a lit to cope with .I suggest you go to the secondary brain tumour group and repost this .A lot of them have had some very sucessful treatment and they will be helpful Im sure .Good luck to you all and take care .

    Granny Sue

  • Apologies this is the Brain tumour secondaries .I only glanced at it thinking it was the Carers group !! .Head all over the place at the moment.  

    Granny Sue

  • FormerMember
    FormerMember in reply to Granny Sue

    Hi Granny Sue

    Thank you for your kind reply. My head is all over the place as well. We feel despondent & at a total loss as to where to turn & what treatment may or may not be available.

    Ive chased up the oncology appointment this afternoon so am hoping they will get back to me as to when we can see them.

    Hopefully some people on the forum will give me hope. 

  • All I can say is you may have longer than you think .People are doing a lot better with brain mets than before and if the primary is fairly stable then there are quite few treatments available .Whatever happens you will get through it .Its not easy and it takes a lot from you  But if you have each other and a supportive family you can get through  anything.My thoughts are with you all .

    Granny Sue

  • FormerMember
    FormerMember in reply to Granny Sue

    Granny Sue

    Thank you again for the kind words . I’m finding it hard as I suffer from acute anxiety & mental health issues & my husband has always been there for me. 

    We’re all hoping & praying that a treatment plan will give us more time together. 

    Best wishes to you, you’re very kind.

  • FormerMember
    FormerMember

    I can't offer you anything more than empathy as I am in a very similar situation to you (daughter rather than son).  My husband's brain tumour is secondary from bowel cancer (already metastasised by the time it was discovered) some 7 years ago.  He had some good years clear so this diagnosis came as a huge shock.  The best outcome is from surgery and radiotherapy, but the size and location has not allowed surgery for him, nor the preferred radiotherapy, stereotactic.  Instead he has had a huge dose of palliative radiotherapy from which has really whacked him.  We are hoping for some improvement recovering from the therapy, and hopefully shrinkage of the tumour.

    He was on steroids after diagnosis and during radiotherapy, and although he needed that to reduce inflammation and fight off side-effects, they significantly affected his behaviour and made him very angry and sharp - not his natural state - which proved particularly difficult for my daughter.  

    Given the time that has passed since your post, I expect you will have better knowledge of treatment plans.  I wish you all the very best, and am open for further discussion if that would help.

    xx

  • Hi,

    Sorry does not cut it I know. But I am. I had two doses now of Gamma knife at BRI. Of my 50% prescription. One with a mask screwed into muscle on your scull eyebrows and rear head uncomfortable but manageable. Second was a moulded mask, very snug. I suppose for accuracy. The staff are great. Caring and compassionate and patient especially when your a little confused sometimes. Of course your on your own because of Covid. I have a large tumour in the temporal limbic area. The main side affects I have had are bad headaches which reduced 20% after12 days down to 4/5. Tiredness due to treatment is expected steroids lift you and drop you on reduction. Take it easy for at least 3 days I had a little seizure. Bright light affects me I’m using sun glasses and an eye mask and darkened room it helps. My next treatment about 9/7/20 will be my last. Dr Herbert tells me. Some shrinkage has been achieved noted from the first post treatment scan. Not sure what’s in stall for me next but as the song goes I will beg steal and borrow whatever time I can. Good luck all happy to chat if it helps